Stanislaw Rajmund Burzynski, Stanislaw R. Burzynski, Stanislaw Burzynski, Stan R. Burzynski, Stan Burzynski, S. R. BURZYNSKI, S. Burzynski, Arthur Burzynski, Hippocrates Hypocrite Hypocrites Critic Critics Critical HipoCritical
David H. Gorski, M.D., Ph.D., FACS “Check My Facts”Hack “Orac”, finally ends his 11/15/2013 diatribe of Dr. Burzynski by USA TODAY’sLiz Szabo, Michael Stravato, Jerry Mosemak, and Robert Hanashiro, with:
—————————————————————— “The concluding section of the story tells us why we need to try:”
“No one told Josia’s parents about any of this”
“Not Burzynski”
“Not the FDA”
“Jose and Niasia Cotto had no idea that their son’s death prompted an investigation by the FDA, until they were contacted by USA TODAY”
“The Cottos had long believed that Burzynski could have cured their son if only they had taken Josia to see him first, before giving him radiation and chemotherapy”
“They had even hoped to launch a non-profit, A Life for Josia Foundation, to help other children with cancer gain access to Burzynski’s treatment“
“Now, they don’t know what to think”
——————————————————————
So what good did Gorski do here, if any ?
1. He offers no opinion as to if he thinks Burzynski should have been responsible for advisingJose and Niasia Cotto that Josia Cotto’sdeath prompted an investigation by the FDA
2. He offers no opinion as to if he thinks the FDA should have been responsible for advisingJose and Niasia Cotto that Josia Cotto’sdeath prompted an investigation
3. He offers no opinion as to if he thinks Burzynski could have cured Jose and Niasia Cotto’s son, Josia Cotto’s if only they had been able to take Josia to Burzynski first
4. He offers no opinion as to what he thinks about the FDA requiring Josia Cotto to receive radiation and chemotherapy, and them failingJosia, before he was able to utilize antineoplaston therapy
Gorski might as well NOT even be here if all he’s going to do is repost the same thing USA TODAY published, yet “say” absolutely NOTHING
Personally, I think it’s has to do with what was said during the JulyTAM 2013 twaddle, when the female panelist made a comment about “people without BALLS”
——————————————————————
Since I have mine, here’s what I think:
1. If there was a moral or legal duty to advise Jose and Niasia Cotto that the passing of Josiaprompted an investigation by the FDA, then it was the FDA’s responsibility
2. I think that if the FDA was NOT requiring patients like Josia Cotto to 1st be failed by conventional treatments like surgery, radiation, and / or chemotherapy, there is a chance that Burzynski’santineoplaston therapy could be more effective because of:
======================================
What USA TODAY, Liz Szabo, Michael Stravato, Jerry Mosemak, and Robert HanashiroDID NOT TELL YOU ABOUT:
—————————————————————— 12/2002 Burzynski interview [3]
—————————————————————— INTRAVENOUS
—————————————————————— 1. Treatment require strong commitment from patients as must be infused with Antineoplastons for many weeks or months ?
—————————————————————— 2. Perhaps 15% of patients taking intravenous infusions of Antineoplastons
—————————————————————— 3. Patients who have most advanced type of cancer will require heavy dosages
—————————————————————— 4. When give large dosages intravenously, have to watch fluid balance…and electrolyte balance
—————————————————————— 5. Intravenous infusion can deliver equivalent of 3,000 tablets a day
—————————————————————— ORAL – CAPSULES OR TABLETS
—————————————————————— 1. Most patients taking oral formulations
—————————————————————— 2. Capsules or tablets
—————————————————————— 3. Limitation of how much medicine can take by mouth
—————————————————————— 4. 50 or 60 tablets a day pretty much all you can take by mouth
—————————————————————— 5. When give orally, see practically no side effects at all
—————————————————————— 6. Patients may develop skin rash, which may last for day or two
—————————————————————— 7. Don’t see any delayed toxicity once treatment stops
—————————————————————— 8. Everything practically goes back to normal within day or two
—————————————————————— 9. Doesn’t even come close to adverse reactions that experience with chemotherapy
—————————————————————— FDA requirements
—————————————————————— 1. Most patients who come to us have received prior heavy radiation therapy, or chemotherapy
—————————————————————— 2. Usually die from complications from these treatments
—————————————————————— 3. Those who survive longest are patients who previously did not receive radiation therapy or chemotherapy
—————————————————————— 4. Longest survivor in this category is now reaching 15 years from time of diagnosis; and she’s in perfect health
—————————————————————— 12/10/1997 [4]
—————————————————————— 1. In addition to original family of Antineoplaston compounds
(the “Parental Generation”)
—————————————————————— 2. Development of 2nd generation of Antineoplastons
In cell culture experiments 2nd generation Antineoplastons developed have been shown to be at least
Thousand times more potent then Parental Generation
—————————————————————— 3. 3rd generation structurally altered Antineoplaston believe will exhibit markedly improved anticancer activity in human cancer cell lines resistant to
Parental Generation
————————————————————— 12/2000 Egypt antineoplaston study [5]
—————————————————————— 4 newpiperidinedioneA10 analogssynthesized and tested on human breast cancer cell line against prototype A10 and anti cancer drug tamoxifen and DNA binding capacity of compounds evaluated against A10
—————————————————————— “3B” and “3D” were several-fold more potent antiproliferative agents than A10 and tamoxifen and had significantly higher capacity to bind DNA than A10
————————————————————— 10/1/2001 Egypt antineoplaston study [5]
—————————————————————— Structural characterization of new antineoplaston (ANP) representatives
——————————————————————
Combination heat with pH modification had virtually no effect on obtained peaks, attesting to stability and purity of compounds
—————————————————————— One had superior affinity to DNA than
prototype ANP-A10
======================================
So, what do we know from this interview with Burzynskifrom over a decade ago, his 12/10/1997 Securities and Exchange Commission (SEC) filing and the antineoplaston research from Egypt ?
—————————————————————— 1. Oral (capsule and tablets): PRACTICALLY NO SIDE EFFECTS at all
—————————————————————— 2. Those who survive longest are patients who previously did NOT receive radiation therapy or chemotherapy
—————————————————————— 3. 2nd generation of Antineoplastons have been shown to be at least a THOUSAND TIMES MORE POTENT then Parental Generation
—————————————————————— 4. 3rd generation structurally altered Antineoplaston believe will exhibit markedly improved anticancer activity in human cancer cell lines resistant to Parental Generation
—————————————————————— 5. The research from Egypt shows promising results for binding to DNA
——————————————————————
I doubt Dr. Gorski will be blogging about the above, anytime soon, as it
DOES NOT FIT HIS NARRATIVE
====================================== 2000 – Thomas Navarro [3]
——————————————————————
What happened to Donna and Jim Navarro when they chose Burzynski’streatment over orthodox treatments ?
—————————————————————— 4 year oldThomas Navarrodiagnosed with medulloblastoma
—————————————————————— Operated on
—————————————————————— Tumor removed
—————————————————————— Scheduled for radiation therapy
—————————————————————— Parents knew he’d be damaged by radiation therapy
——————————————————————
Nobody his age survives this type of tumor anyway after radiation therapy
——————————————————————
Why they decided to go to Burzynski Clinic
—————————————————————— Could NOT treat him because FDA requires failure of radiation therapy for such patients
—————————————————————— Parents decided NOT to take any treatment
—————————————————————— Burzynski asked FDA several times to allow administration of Antineoplastons, because already had successful treatments for some other children without any prior radiation
—————————————————————— 5/2001 – developed numerous tumors
—————————————————————— Burzynski suggested to parents they should go for at least chemotherapy
——————————————————————
Went for chemotherapy to one of best centers in the country, Beth Israel Hospital in New York
—————————————————————— Chemotherapy was successful, but he almost died from it
—————————————————————— Severly affected his bone marrow
——————————————————————
Phone call from Thomas’s father telling Burzynski doctors thinking they won’t do anything else for him and Thomas will die within a week because of severe suppression of bone marrow
—————————————————————— Burzynski encouraged father to do whatever possible because such patients may turn around
—————————————————————— He turned around
——————————————————————
About month or two later developed 15 tumors in brain and spinal cord
——————————————————————
When close to death, nothing available, FDA called and allowed Burzynski to treat Thomas
—————————————————————— Treated Thomas
—————————————————————— Survived 6 months
—————————————————————— Tumors had substantially decreased
—————————————————————— 11/2001 – ultimately died from pneumonia
——————————————————————
Perhaps professor and chairman of oncology at the Mayo Clinic in Minnesota, Jan Buckner, professor and head of the division of bioethics at NYU Langone Medical Center, Arthur Caplan, chair of the Children’s Oncology Group, an NCI-supported research network that conducts clinical trials in pediatric cancer, pediatric oncologist and professor of pediatrics and pharmacology at Children’s Hospital of Philadelphia, Peter Adamson, David H. Gorski, M.D., Ph.D., FACS, a/k/a GorskGeek, and “Orac”, ALL think that the 15 tumors Thomas Navarro had in his brain and spinal cord, which had substantially decreased under Burzynski’s antineoplaston therapy, were because of Pseudoprogression a/k/a Pseudo-Progression (psPD) and / or pseudoresponse, caused by chemotherapy ?
Is this what they mean by:
“In reality, the tumor was just returning to its previous size” ?
====================================== Dustin Kunnari [3]
——————————————————————
At 2 ½ years old, Dustin Kunnari had brain surgery
—————————————————————— Surgery removed only 75% of tumor
——————————————————————
Dustin’s parents, Mariann and Jack, were told Dustinwould only live 6 months
——————————————————————
Chemotherapy and radiation may extend life slightly, but at very high cost in quality of life with very serious side effects
——————————————————————
Mariann and Jack decided to look into alternatives
——————————————————————
Found out about Antineoplastons
——————————————————————
After only 6 weeks of intravenous treatment, MRI showed he was cancer free
—————————————————————— One year later another tumor appeared on MRI
——————————————————————
By this time Dr. Burzynski had developed more concentrated form of Antineoplastons
—————————————————————— After 5 months tumor was gone
——————————————————————
remained cancer free ever since
—————————————————————— Age 7 – taken off Antineoplastons
——————————————————————
To further complicate matters, oncologist kept threatening parents with a court proceeding to take Dustin away and force him to take Chemotherapy/Radiation treatment
——————————————————————
This continued for a year, even after success with Antineoplastons
—————————————————————— Age 12 at time of 12/2002 interview
——————————————————————
Perhaps professor and chairman of oncology at the Mayo Clinic in Minnesota, Jan Buckner, professor and head of the division of bioethics at NYU Langone Medical Center, Arthur Caplan, chair of the Children’s Oncology Group, an NCI-supported research network that conducts clinical trials in pediatric cancer, pediatric oncologist and professor of pediatrics and pharmacology at Children’s Hospital of Philadelphia, Peter Adamson, David H. Gorski, M.D., Ph.D., FACS, a/k/a GorskGeek, and “Orac”, ALL think that the tumor David Kunnari had, which disappeared under Burzynski’s antineoplaston therapy, were because of Pseudoprogression a/k/a Pseudo-Progression (psPD) and / or pseudoresponse, caused by surgery ?
Is this what they mean by:
“In reality, the tumor was just returning to its previous size” ?
====================================== Paul Leverett [3]
—————————————————————— 5/1999 – diagnosed with glioblastoma multiforme grade 4 brain stem tumor
—————————————————————— Prognosis was would probably be dead before end of 1999
——————————————————————
Orthodox medicine gave him no hope of survival
—————————————————————— Given maximum amount of radiation was capable of receiving
——————————————————————
Slowed tumors growth slightly, but didn’t alter prospects for survival at all
——————————————————————
After research on Internet learned about Dr. Burzynski’sAntineoplastons
—————————————————————— 9/1999 – began taking Antineoplastons intravenously, administered by wife Jennie
——————————————————————
After 6 weeks tumor had grown by only 2 %, Glioblastoma’s normally double in size every 2 weeks
—————————————————————— 12/2000 – PET scan confirmed complete remission
——————————————————————
Stayed on Antineoplastonsuntil 8/2001 to ensure tumor wouldn’t reoccur
——————————————————————
Just under 20% tumor necrosis remaining in brain stem, which is probably scar tissue
——————————————————————
Oncologist (at MD Anderson, Houston) initially wanted to show scan’s to his hospitals (MD Anderson) tumor review board
——————————————————————
for whaever reason, refused further contact and didn’t go ahead with it
——————————————————————
Perhaps professor and chairman of oncology at the Mayo Clinic in Minnesota, Jan Buckner, professor and head of the division of bioethics at NYU Langone Medical Center, Arthur Caplan, chair of the Children’s Oncology Group, an NCI-supported research network that conducts clinical trials in pediatric cancer, pediatric oncologist and professor of pediatrics and pharmacology at Children’s Hospital of Philadelphia, Peter Adamson, David H. Gorski, M.D., Ph.D., FACS, a/k/a GorskGeek, and “Orac”, ALL think that the glioblastoma multiforme grade 4 brain stem tumor Paul Leverett had, which disappeared under Burzynski’s antineoplaston therapy, were because of Pseudoprogression a/k/a Pseudo-Progression (psPD) and / or pseudoresponse, caused by radiation ?
Is this what they mean by:
“In reality, the tumor was just returning to its previous size” ?
====================================== Crystin Schiff [3]
—————————————————————–
Ric and Paula Schiff about torture their daughter Crystin had to endure during chemotherapy/radiation treatment
—————————————————————– Diagnosed with perhaps most malignant tumor known, rhabdoid tumor of the brain
—————————————————————–
Historically, there was no case of such a tumor ever having long response to chemotherapy or radiation therapy
—————————————————————–
Received extremely heavy doses of radiation therapy and chemotherapy, because nobody expected she would live longer than year or so
—————————————————————–
Was terribly damaged with this
—————————————————————–
Responded very well to Antineoplastons
—————————————————————– Complete response
—————————————————————— Died from pneumonia
—————————————————————— Immune system was wiped out, so when she aspirated some food, she died from it
—————————————————————– Autopsy revealed didn’t have any sign of malignancy
—————————————————————–
Particularly despicable story, because when Ric Schiff asked Dr. Michael Prados, then head of neuro-oncology at University of California at San Francisco Medical Center (UCSF), if he knew of any other treatment besides chemotherapy/radiation for Crystin’s brain tumor, Prados replied in the negative
But a few years before, he had sent you 14 letters documenting effectiveness of Antineoplastons on Jeff Keller, another patient with brain cancer
Is this true?
Yes, Jeff Keller had extremely malignant brain tumor
had high-grade glioma of the brain; failed radiation therapy and additional treatments
responded extremely well to our treatment
was one of patients whose case was presented to NCI
there was no doubt about his response
Dr. Prados knew about it
If he was dealing with hopeless tumor like Crystin Schiff, why didn’t he call us?
Do you know why Prados did not tell them about Keller’ssuccess with your treatment?
It’s hard for me to tell
It happens that Dr. Prados and Dr. Friedman, who became boss of FDA, came from same medical school
they work closely together, and perhaps there is something to do with general action against us
It would be inconvenient for Dr. Prados to say that treatment works if FDA was trying to get rid of us and when his friend was Commissioner of FDA at that time
Perhaps that’s the connection….
—————————————————————–
Perhaps professor and chairman of oncology at the Mayo Clinic in Minnesota, Jan Buckner, professor and head of the division of bioethics at NYU Langone Medical Center, Arthur Caplan, chair of the Children’s Oncology Group, an NCI-supported research network that conducts clinical trials in pediatric cancer, pediatric oncologist and professor of pediatrics and pharmacology at Children’s Hospital of Philadelphia, Peter Adamson, David H. Gorski, M.D., Ph.D., FACS, a/k/a GorskGeek, and “Orac”, ALL think that the rhabdoid tumor of the brain Crystin Schiff had, which disappeared under Burzynski’s antineoplaston therapy, were because of Pseudoprogression a/k/a Pseudo-Progression (psPD) and / or pseudoresponse, caused by chemo and radiation ?
Liz Szabo’sUSA TODAY “killer cancer” article as interpreted by “Orac” made 3 claims [0]:
—————————————————————— “Conventional cancer treatment can also cause tumors to swell temporarily,”[1]
“due to”
“inflammation,” [2]
“A patient who isn’t familiar with this”
“phenomenon” [3]
“may assume her tumor is growing”
——————————————————————
The issue with citing these 3 studies is that each then needs to be reviewed to determine if they have any relevance to the patientsBurzynski has treated in the phase II clinical trials:
—————————————————————— [1] – 12/2009 – Pseudoprogression and pseudoresponse in the treatment of gliomas
—————————————————————— 1. Has Burzynskitreated patients with gliomas, brain tumours, or recurrent glioblastoma ?
—————————————————————— 2. Has Burzynski’spatients been treated with combined chemo-irradiation with temozolomide which may induce in 20-30% ?
—————————————————————— [2] – 5/2008 – Clinical features, mechanisms, and management of pseudoprogression in malignant gliomas
—————————————————————— 1. Has Burzynskitreated patients with glioblastoma ?
—————————————————————— 2. Have any of Burzynski’spatients been treated with temozolomide chemoradiotherapy ?
—————————————————————— 3. so-called pseudoprogression can occur in up to 20% of patients
—————————————————————— 4. can explain about 1/2 of 20%
—————————————————————— [3] – In support of this “phenomenon”, the article provides a link to a Canadian web-site which posits:
—————————————————————— “RT/TMZ is now widely practiced and the standard of care for appropriately selected patients, we are learning more about the consequences of RT/TMZ”
“One phenomena, termed Pseudo-Progression (psPD)…”
——————————————————————
The problem is that this only applies to “Glioblastoma Multiforme (GBM)”, and the article provides NO proof whatsoever, that any of Burzynski’s “Glioblastoma Multiforme (GBM)” patients have taken “RT/TMZ”
——————————————————————
Additionally, the sitecites the reference as:
Sanghera, Perry, Sahgal, et al., “Sunnybrook Health Sciences Odette Cancer Centre” (in press, Canadian Journal of Neuroscience)
(“In press” refers to journal articles which have been accepted for publication, but have not yet been published)
However, the journal article in question was published 1/2010, so it has NOT been “in press” for over 3 years and 7 months [4]
—————————————————————— GorskGeek stupidly suppositories:
—————————————————————— “It’s very heartening to see a story like this in a major news outlet, and I must congratulate Ms. Szabo for her thorough deconstruction of the phenomenon that is Stanislaw Burzynski“
—————————————————————— GorskGeek, just because a great portion of Liz Szabo’sUSA TODAYarticlequoted verbatim from The Skeptics™ play book, does NOT mean she was anymore successful at “deconstructing” Burzynski [5], anymore than you have NOT
—————————————————————— GorskGeek then regurgitates:
—————————————————————— “Remember how I said that Bob Blaskiewicz will want your help?”
====================================== Dr. B interview #2
2/7/2013 (10:31)
======================================
Why do you continue to do this ?
Why haven’t you just, given up ?
Because I am right
Why should I stop when I have 100’s of people who are cured
Mhmm
from incurable brain tumors
Ok
We have over 100 people, who are surviving over 5 years, just in the supervised clinical trials with brain tumors
So obviously this works (laughing)
It works in great way
So why should I stop because, some evil people like me to stop ?
It doesn’t make any sense
Evil will lose
So we are right, and we’re going to win
Not, uh, no matter how soon this will be established, but we are going to win
Well, for what it’s worth, and this is something, this is why I wanted to put myself, uh, in front of the camera with you
Obviously I spent 8 months, um, and I’ll try and not get too emotional about it, because that’s unprofessional (laughs)
Yes
but I spent, I spent a long time, looking into this, speaking to people,
Yes
You have very kindly given me access to everything here
Sure
Speak to anyone
Speak to patients
To see medical records, and I have, uh, been amazed by what I, what I’ve seen
I know the statistics are now showing, in the world, that one in two men, will have cancer One in 3 women, will have cancer
Yes
It’s a, it’s a massive problem
That’s right
And I can see that you’ve genuinely found, uh, a cure for cancer
(?)
You know, it might not work for everyone, but if you’re given the su
Yeah
given the support
Yes
If you’re given, uh, the, uh, I don’t know, just the support basically, and the funds maybe, you could really, do some work, that could change, the whole (nature ?)
Absolutely, and then we can get better, and better
Of course, what you have now is not yet the finished products
We understand that
That’s something we can substantially improve
The response rate can be improved
So, certainly, all of this can be done, but, obviously, we need the resources
We need time to do it, and most of my time is spent with such silly thing like, uh, uh, protecting ourselves against attacks from, the people who are hired to destroy us
Ok
Obviously, there are some companies who are working on the payroll of pharmaceutical business, who are trying to smear us
To spread bad publicity about us
To generate lies about us
These people are criminals, and they are still flourishing
The end for them will come soon, but they are still hurting the other people
because the other people will not take treatment
They will not come, and they will die
Ok
There is no cure for, uh, uh, malignant brain tumors which are inoperable, ok, and we can cure at least, good percent of these people
We presented, our results, at many, many, 1st class scientific congresses, like nuero-oncology congresses, cancer congresses, and it’s important for U.K.
I showed you yesterday, eh, presentation on brainstem glioma in children
Yeah, I have it here
and at the same, uh, Congress, in Edinburgh, we presented also another, eh, eh, paper, on the treatment of glioblastoma multiforme, and the survival on, about 88 patients, in glioblastoma multiforme
So obviously, I make, I make this available to everybody , they would like to listen, come to my presentation
They, they, they know about it, but they don’t want to know about it
Why not ?
(laughs) Because they are working
They are slaves of the big pharmaceutical cartels, ok, and on the payroll of big companies
They hate to see somebody else outside, the slavery, who can do it
I’m free man
I can, ah, do the research because, I am spending my own money for it
I don’t need to beg pharmaceutical companies or government to give me the money
I can do it on my own
They hate it
These people
They hate it because they have slave mentality
Mmm
They arch their back for scraps of money from the table, of some powerful companies, from the government, and they, how can you deal with s, slaves
They don’t want to see something new because this would disrupt, slavery system
Ok
So, current medical education s, system is manufacturing robots
They don’t think on their own, they use only what, the government, or the lawyers of the government, or what the administrators will tell them to do, ok, and if they don’t then they get punished, ok (laughs), and that’s a great system for a ph, pharmaceutical companies, because obviously they can make a lot of money, but it’s not a great system for people who have cancer because they don’t have good results
So you’ve presented at these conferences, and people don’t come up to you afterwards and say:
Mhmm
“I want to come and see what you’re doing
I’ve got to see this for myself”
Ah, well, uh, at each of these Congresses I meet a few doctors who are top specialists in their area who will come to me and say: “Ok, this looks very interesting
We’d like to know more about it
Please send me some, eh, results and a few cases that I can review,” and that’s what you do
Yeah
You send them these cases, and that’s the end of it
I don’t hear from them anymore because they’re afraid to move any
Mmm
further, ok, because they know if they move further, they get punished
They don’t receive grants
They’d be scrutinized by their peers
They’re afraid
Ok (laughs)
Yeah
They work for us
Yeah
they work for us undercover
We have over 100 telephone callers who used to work with us, but they don’t want anybody to know about it because they’d be immediately attacked by the other guys
And the pharmaceutical world as well
Ah, well, the other guys are obviously working for cartels
Uh, they’re on the payroll, a, oh, of big business, which is cancer business, and they don’t want to lose it
Uh, in average, uh, city you might have say about 20 oncologists
One of them may work for us, but he does not no, want to tell anybody that he’s doing this because he would be destroyed by the other guys
These 20 guys will jump on him and he will, won’t have practice anymore
Ok
Yeah
So that’s, uh, the travesty, but, uh, uh, I believe that this is coming to the end
Ultimately, su, more and more doctors will learn what we do
Yeah
and more and more patients will benefit, and the breakthrough will come, but before the breakthrough will come, you have the toughest time
Mmm
because, the opposition is mounting the attacks
Whenever we came up with an announcement that was in the 20th century, we have such and such success, you are furiously attacked by the other guys, who are on payroll, uh, of cartels
Ok (laughs), for no apparent reason
You should be congratulated but we are attacked, because they see we are going to win, and they hate to see this because this means they won’t see money anymore for them, ok, or at least they think they won’t, they won’t have their payroll anymore
————————————————————— Dr. Burzynski on publishing (6:18)
—————————————————————
So why does, why does, ev, everyone hide behind this thing of saying about publishing, because that’s the thing you hear all the time
Well, we cannot publish until the time is right (laughs)
Yeah
If you would like to publish the results of, of a 10 year survival, for instance
Mmm
Which we have
Nobody has over 10 year survival in malignant brain tumor, but we do, and if you like to do it right, it takes time to prepare it, and that’s what we do now
What we publish so far
We publish numerous, uh, publications which were, interim reports when we are still continuing clinical trials
Now we are preparing, a number of publications for final reports
Eh, many of my publications were rejected by known publi, by known journals like
Why ?
like Lancet, like JAMA,
like New England Journal of Medicine
Why ?
Because they say: “Sorry, but you didn’t receive enough priority to be published“, and if you look in these journals and 1/2 of the, these journals, they are advertising for pharmaceutical companies
Obviously if this would come from a pharmaceutical company, this would be published on the 1st page
Mhmm
Ok
Because this, you don’t have objectivity with these guys
They are on the payrolls of the big cartels, ok, and again and if you try again to send, oh, oh, my manuscript to good journals, if they reject it, we go on Internet and you describe what are these guys
So then everybody will know, because I have very good evidence
that we tried many times to publish in 1st class journals, and we are always rejected
It’s just, persistent
And not, and not because of lack of scientific knowledge
No, because of lack of priority
And who has priority ?
The guys who are paying money for advertising
Ok
So that’s, unfortunately what I think will end sometime
—————————————————————
And we are now preparing publication, on some of these results
We have already published the results on the technique of very difficult variety of breast cancer, which is triple-negative breast cancer
Now we are preparing another article on the technique of gynecological cancer, which is best series of over 100 patients treated with incurable ovarian cancer, uterine cancer, (?)
So this, has now been prepared for press
Eh, of course, I would like to, give everybody intravenous antineoplastonssee, if they qualified, but, this is limited by the government, because the government limits us to only the patients who are
have brain tumors, but the other patients, they can be treated through this combination of medication which work on the genes Antineoplastonswork on over 100 different genes
That’s why they give us, very good advantage
There are medications that also work on a number of different genes, and we can combine them together, and use them in the right way
So
that’s what we’ll continue to perfect, and that’s, uh, most of our patients
been treated with just combination of targeted medications
————————————————————— The Future (9:00)
—————————————————————
Why do you continue to do this ?
Because you know the truth, and you want to get the truth out there ?
Absolutely, because we understand we on the right track
Somebody has to do it
I was lucky enough to, find out about it
We have evidence that we are right, and, uh, I don’t think, why should I stop if, people that don’t have sufficient knowledge, who are working, on behalf of some big business, would like to stop us
We are right, and we would like to continue to help people, and, uh, that is what is going to happen
Of course, probably the best reason to make a discovery, and let it stay as it is and ask the other people to publish after I die
Yeah
That’s what happened with the discovery of Nicolaus Copernicus, who was my countryman
Eh, his book was published, sss, when he died, and, uh, for good reason, because of such fears for execution of the people who followed him
like
Hmmm
Galileo, Giordano Bruno, that it took the church, uh, only until recently to agree that, uh, they made the error, in the case
Ok
So if you come up with some breakthrough, you have a choice
Keep it quite until the other guys who understand what you do
or try to use it
In my case, I decided to use it, because I would like to, help people, and now that we can save people, so why should I keep quiet, ok, but certainly if, my work won’t get published because it keeps getting rejected by some of the journals, then we wait until I die, and then we let the other guys publish it
So, ok
======================================
====================================== Juan F. Martinez-Canca – Consultant – Neurosurgeon (20:31)
======================================
So tell me a little about brain tumors
When did you kind of first come across your first brain tumor ?
My very first brain tumor was in high school, unknown entity, fascinating, enigmatic
Unknown, is the word
Uh yes, I hoped
I must say the uh vocation initially in my case came at an early stage in my life
I remember very well, 3 years old saying I will be a doctor, a doctor, a doctor, and gradually I became aware of this vocation from neurosurgery but really I didn’t know what from because of vocations like see it
I put in my soul, so what ?
Here we are
vocation
realize that in the following years
My first professional brain tumor was impressed in 1996, something called glioblastoma multiforme, and I was uh, uh, shocked, and thrilled, and excited by seeing a nasty glioma as my register described it
And I was uh in as you can see my poor English
I just wrote in my notebook nasty glioma must be nasty in the history of classification
That person died, unfortunately after a few months, it was a very bad disease, at that stage, was really advanced and uh that was my first ? with reality
The glioblastoma, or nasty gliomas kill people
And that was the starting point of a, of a very complex process that I am still never looking (?)
—————————————————————— Hannah’s Operation (1:35)
——————————————————————
In the case of Hannah we wanted to wake her up to make sure that we could remove the whole entire ter (?) as much as we can see, or feel it, without damaging, basic structures
Language, relation with outside world, movement, etcetera, etcetera
That requires a very specific and very expert high expertise from the, from the surgeon, because normally everyone is not awake during this
It’s a very specific operation
Mr ? we were lucky, was there to do it, and I was lucky enough to be the co-pilot
So we performed this procedure
I can’t remember the date now
April, the 1st
April
Correct
Good date
So
April Fools Day
On April the 1st we awakened ?
and I remember very well, that huge feeling of satisfaction, at the end of the procedure
I have, I still have my pictures, do you remember ?
We were taking some pictures during the operation
and that is ? like a trophy, because some people are not very good, some of the people are not very well, but in this case we had fantastic surgeon, a fantastic patient, and a great environment, and it worked very well
And the end of the operation, I remember seeing Hannah’s brain without physical tumor, microscopic means with the eyes
Of course, millions and millions of cells still widespread in the brain
A tumor is never a circumscribed entity
It goes all over the place
Nevertheless, it was a very satisfactory physical procedure
We send the samples for histological purposes
and unfortunately we were wrong, because it was not a grade 2, not a grade 1, it was a grade 3 tumor
? the next step
The grading of the tumors
When grade 1’s and 2’s, usually consider the good guys in the field
But not a good thing to have a brain tumor, but you have to choose, choose a grade 1, or a grade 2
Grades 3 and 4 featured by malignancy
By aggressiveness
They are far more active tumors than the 1’s and 2’s
Maybe the grow much bigger, and they are far more aggressive than the other 2
Specially grade 4
—————————————————————— (3:42)
——————————————————————
So you got out most of it, yeah ?
Yeah, it was fun but got a good job here because you’ve got most of the tumor out, and we have Hannah talking, moving, and uh conversing normally
She was no percentage (?) deficit
At some point during the operation she had some stuff, a fitting, some sort of vagueness and she couldn’t talk very well, so we had to stop right away, and change the level of, of oxygenation, but other the operation, microscopically speaking, the whole tumor was taken away
So the tumor was taken away, so it was a success, but in the back of your mind did you know that, did, the job was not complete ?
We always know
We always know that
Except when we are talking with a benign meningeal (?) grade 1 that we can take physically lump away
Except in those cases of rare, rare success and joy
Most of the tumors we know, have millions of cells that remain in the brain, and they can be very, very aggressive
So, did you know in the back of your mind that what you were really doing, in this case, was probably just prolonging her life ?
Uh, in a way we are providing a setting, for a 2nd stage therapy to take place
Certainly, if we do nothing about it in the large (?), which is a (?) part of her brain, Hannah had little chance to survive, many weeks from now
Once the whole thing developed, we knew it was a count down
We need to do 2 things, to establish a way to help her to prolong her life with best programs
That’s, is a universally accepted
Removing a tumor is no longer an option
Again, I believe that (camcorder ?)
Yeah
So Hannah had radiotherapy, and you saw the scans after the radiotherapy, and, and what did you see ?
Ok
We decided, no Hannah decided to go through conventional pathways of treating of tumors, which is oncology medicine (?)
She had radiotherapy, which aim is to kill the remaining cells we have not been able to remove, remove in surgery
So, that happens, and Hannah had a shrinking stage of uh of things, with subsequent scans show the suc success
It was not much tumor
However, the remaining amount of cells were there from day one
We knew they existed, and they were visible on the scan
We could actually produce the scans later right ?
Yeah
And I will show you pictures of Hannah
And we knew there was (reserve ?) tumor
The aim of the radiotherapy was to try and kill these remnants of tumor that have remained behind
In her case, it was not much tumor left, because we know that subsequent scans were done following radiotherapy
Still the small areas of tumor highlighting halo were still here, as you, as a (?), as a reminder, of the main tumor
Inevitably those cells would progress again, to a further tumor, and usually, to a high grade tumor where the tumor progressed, normally is not rare, to see that they, scale one grade
So, the fear here with Hannah was get, this grade 3, would progress to grade 4 at some point
—————————————————————— Dr. Martinez on Dr. Burzynski (6:50)
——————————————————————
Quite obviously you knew that I did a lot of investigating
I looked for people in the world who were still alive, who had uh, this type of tumor
I spoke to you
You told me, of, some things uh, and I’d mentioned to you Dr. Burzynski
What did you
What did you think about that when I 1st mentioned it to you ?
Well, when you mentioned that to me I didn’t know Dr. Burzynski at all
I knew there were some people going to Houston for some therapy, among them, one well known Spanish singer, but she’s well known, very well known actually, going from a, from a another kind of tumor, not a, not a brain tumor
But I knew vaguely about this a, this a person in, in Texas, with his uh fancy treatment, challenging establishment, but, as I said, a little
amount of, of knowledge in my brain
in my brain
Well, I knew immediately when you mentioned that, as well as other options that we discussed, I looked at every option you’ve showed me, because you were really active in looking and intimate, in the literature
You gave me 2 or 3 main leads of reading, but certainly Burzynskicame as the most solid one, because the rest of them you gave me were really experimental therapies, with little or no success, and uh more in my dimension but more imagination than technique, with them
So, I look at Burzynski’s story, and was almost immediately moved about, about his personal uh yearning
Is a person who has been, how many years now ?
20+ ?
30
30+, sorry, fighting against the very powerful medical establishment, and subjected to court judgments, to punishment by a, by a (?) community, to intense scrutiny, and uh, ostracized by the so-called uh conventional doctors
Despite that, 30 years + later, still doing his business, in fact, the most important thing, with a huge amount of people, smiling, alive, and very healthy following the diagnosis of the tumor
To me that was something revealing
No matter whether this man advocates, on praying to the moon, or going to the sea, (whatever it is ?)
The fact is the fact
He has a large # of patients, alive and well, following diagnosis of tumor
In fact, the most important, children, at the age of 3 or 4, being treated by this uh therapy, reaching 30’s, reaching 20’s, and alive, and very nice, this a living example, that this man, is not uh, selling air
Ok
For that I went to the films, available to everyone on the Internet, on YouTube, except the usual terms of communication
I dislike very much, they commit (?)
I really dislike it
But, I must admit it was a good way, to put the facts to the public
This way
The main criticism of Burzynski in the scientific community, is the lack of reliable communications
That, that’s a fact
I will not go into this during this interview, this chat
Yeah
Ok
Because I think it’s a matter for, further discussion
I only go to the physical facts that you can see
In the last court proceedings, there were a large # of supporters, saying, we are the living example, of this process isn’t pantomime (?)
Well I think in my humble microscopical opinion, Burzyn, Burzynski’s trying to do, is to show another way to treat cancer
Another way which directs completely from the current guidelines
The current guidelines are full of financial interests, are full of international agreements, and of course someone who attempts to upset this structure will face serious adversity
This man is brave enough to put his person, his family, his world, on the spot, to fight for the truth
To me, it’s clear
This guy, not going into details again, I don’t want to go into technical details today, because something for further discussion, but only the facts he’s presented, is strong enough to stop and think about it
That’s why, I would like to say, in the 1st instance
And obviously you’ve seen Hannah’s su, scans, and you saw her last scan, and you can see uh her
Well since you told me about this, I intense look at the Internet again, all the available evidence, I looked at his, uh, not publications but at his data
I, I have no peer-review qualifications yet, about Burzynski’s cases, but I look at practical cases
Too many, to be a random chance of, oh this is, she has a one in a million
No, it has, many ones in a million to be a chance
So this man is presenting something serious
So, I ask (?) (?)
Forced to do, because, I thought, ok, what you face here is a conventional radiotherapy, chemotherapy, but if you look at the #’s, that is again, in the public domain, people with grade 3’s, will not survive longer
Grade 4’s, do not survive longer
My duty as doctor is to tell the patient, the person with the grade 4 tumor, you have about 11 months to live without treatment
Be lucky
With treatment is unpredictable
(I don’t know ? or all along ?)
But the #’s are #’s
If you look at the data, people die very quickly from a grade 4
Grade 3, follows very closely
So I thought, there’s nothing to lose by this therapy, because #1 is not incompatible wha, with what you have been doing so far, and it gives you a chance to change perspective, to change environment
Go to a different setting, and try it
That’s a fact (?)
Plus the fact that many, many, many people are being treated (?)
under this guidance, and they are surviving very well, and they are alive
Mmm
Hannah’s case
When are you going to Texas ?
We went in December
December
Well you come back just a few days ago
We came back 3 weeks ago in January
So in that period Hannah had her tumor treated with antineoplastons, and there has already been a scan, which shows shrinking of 15%
Yeah
Is such a long, long journey, you have a nice little period, a month and a 1/2 maybe ?
Yeah
After so many months of punishment and suffering, and which have a nice (result ?)
Plus, the emotion of Hannah Hannah has come back to normal, I think
I remember her very depressed and the beginning of story, and not having any single hope in her mind
I remember a video where she was crying
Now she has this chuckle in the video when she is joking about the scan, and so positive and optimistic, and the results cannot be more promising
That, in my view, (certain was seen ?) in detail, I think
—————————————————————— Hannah’s MRI scans (13:34)
——————————————————————
Take a look at this
This area of bright, intensity here, is not in the right, so poorly, is abnormal
And that was the 1st pictures we saw for Hannah
And some people said, that must be a stroke because of this a straight line there, and there
Normally, as a rule of thumb, something with a wedge shape, tends to be a stroke, because the vessel, providing blood, opens in the small vessels in a wedge fashion
It look a stroke to me actually, to, to be, to be honest, the very fact that we thought it was a stroke, but then we came to recognize it was a tumor, for all the features in (?)
So this is the 1st picture
If we look at the, on the side of the screen, we have now a different view
Instead of looking from the feet, we’re looking at front of Hannah
Eyes are here
That’s the brain
Left side
Right side
Look at the left side, because we know, the tumor’s (?) on the left
We look to go, deeper in her head, and we see, a dark area
It’s a different fashion (?) and that’s why you can see the white, becomes like a black
And you can see, the edges of this is strange, formation
Clearly abnormal because nothing there in the side
So this, was the question for the individual
What is it ?
So after a little bit of discussion we came to the conclusion that thought it was a glioma, tumor, from description, in the brain
So
This is after the operation
After the operation
Operation
This is the 17th through the 4th
Yep
We go on the right side better because this is the film
We see here something very clear
I want to get another view, so you understand a little bit better
Yeah, this
In this view, you can see
Can you see that ?
Yep
You can see the (?)
The chunk of bone, we take away, to go into the brain
And these are screws and plates, to keep things in place
2 screws, one little plate
And there, the other one
Ok ?
So this is the axis
Let’s put it on the right so you can see it better
Here, you can see it much better how the craniotomy is performed with one hole, one drill, to put the, the saw and drill away, and you can lift this cover
Ok ?
At the end of the operation we put this plates, one there, one there, one there, and one there, as you can see
2 little plates
2 little screws with one plate to fix the hole
Ok ?
And then, the skin itself
—————————————————————— The Future for the Treatment of Cancer (16:18)
——————————————————————
So, so how do you think uh brain tumors will be treated in the future ?
That’s a, that’s a very good question
Uh, certainly not this way
Let me give an answer for another time
But certainly not this way, because uh the chemotherapy, the main, the main group of chemotherapy is that, it is itself a killing agent
You are using, destructive element, to try and prolong life
In, in itself makes no sense to me
Of course, the, the argument for that from the, from the (chemical ?) companies, from the people who produce this (?), excuse me, this doctor, we are saving lives, and it’s true
This is the only way, officially admitted today, to treat tumors, chemotherapy
So do you think we’ll have a cure for cancer ?
I’m hope it is
I think it’s coming, actually, but uh, but uh, it’s not accepted
Then you think Dr. Burzynski’s really on to something ?
Definitely
The evidence is overwhelming
He’s not I think, the evidence
What I think is irrelevant
Oh my opinion is one opinion in, in millions of them
But if you look at the facts, Dr. Burzynski is achieving things
It’s not, it’s not promising
Is it
It’s the delivery of things
If, if I don’t understand it incorrectly
The head of our patients, he’s an ex-patient of cancer
Am I right ?
This girl had a brain tumor Hannah was talking to people have been cured
So this is a fact
This is not tales
This is not uh, uh, selling, thin air
This man, whatever he’s doing, because of his story
Part of his secret agenda, the chemicals (?)
be explained
I not asking for the patent of his things
I don’t, I don’t care anyway
But he’s working with compounds, with substances created by this man, that cure people
So why do you think more people aren’t receptive, to the, you know, other oncologists, neurosurgeons ?
That’s a very complex question because uh we are fighting against a very well established protocol of producing doctors that think in a very particular way
Who, whoever decides to direct from that way of thinking is in hot water
Invariably
The scientific community these days, is uh biased by peer-reviewed publications, commonly accepted guidelines, and there’s no space whatsoever, for any, eh, diversion from the norm
Put it this way
Ok
I’m not saying that I directed (?) from norm
I’m not here to argue the system, but I am here, to ask questions
I would like to ask questions
Why, we have to accept
I was in medical school, and I was told by a pediatrician, (?) of the (?) service, babies should a stop breast feeding at the month #4, and they start with these magic formulas for babies
At that, at that point I believed
At that point I was a very young medical student
I said, (?) the head of pediatricians tell me, my baby has to stop breast feeding, at the age of 4 months, must be true
He is a doctor, but he’s a stupid (doc ?
I am so sorry to disagree
He was delivering, a very nasty message
Basically you should continue, 2 years away, 3 years away, when the baby says, that’s it
Naturally stop the breast feeding
You understand what I mean ?
So, in the same fashion, the oncologist delivers the message that they have been taught, by the teachers
And then you go up in the scale
Ok
If you go up in the pyramid, the top of the pyramid is usually money, eh, economic interests, political interests, namely
We go outside the core mains of medicine
That’s why my complaint
That’s why my fight here
I would like to ask those things
I may be wrong, by at the end of the day
I may be
I don’t know
I don’t know all the answers
But if at the end of very good search, I am convinced that this is the only way, I say, I am sorry
I had to ask
Go back to the norm
But (?)
I totally suspect that the norm is wrong
There must be another way
====================================== http://www.neurokonsilia.com/About-Us.html
======================================
[1] – September 28, 2013 “The Skeptics™” Burzynski discussion: By Bob Blaskiewicz – 2:19:51
====================================== BB – Bob Blaskiewicz
—————————————————————— DJT – Didymus Judas Thomas
====================================== 0:47:00
—————————————————————— BB – “Ummm, o-kay”
“Uh, I want to turn this over to the people who are watching”
“Um, I want to give them a a chance to address you as well”
“Uhmmm, hi everyone”
—————————————————————— 0:48:00
—————————————————————— 0:53:00
—————————————————————— BB – “A every time that I and and and and, and David (James @StortSkeptic the Skeptic Canary) points this out, that um, you you know you’re not going to speculate about the the FDA but then at every turn you’re invoking the FDA as being obstructionist“
—————————————————————— 0:54:02
—————————————————————— BB – “I, I just find that to be contradictory and and self-defeating“
====================================== DJT – Bob, exactly where did I invoke “the FDA as being obstructionist” ?
====================================== 1:02:00
—————————————————————— BB – “Um, it’s it’s it’s not the FDA’s, but you understand it’s not the FDA’s job to tell someone that their drug doesn’t work“
—————————————————————— 1:03:00
—————————————————————— BB – “it’s it’s it’s up to Burzynski“
“It’s up to Burzynski to show that his drug does work”
“And it’s always been his burden of proof“
“He’s the one that’s been claiming this miracle cancer cure, forever”
====================================== DJT – Bob, Burzynski showed and proved what he needed to prove to the FDA in order to do phase 2 clinical trials, 9/3/2004 – FDA granted “orphan drug designation” (“ODD”) for Antineoplastons (A10 & AS2-1 Antineoplaston) for treatment of patients with brain stem glioma, .10/30/2008 – FDA granted “orphan drug designation” (“ODD”) for Antineoplastons (A10 and AS2-1 Antineoplaston) for treatment of gliomas, and FDA approved phase 3 [1-2]
Oh, and Bob, exactly when did Burzynski 1st claim “this miracle cancer cure” ?
====================================== 1:04:02
—————————————————————— BB – “Um, that we’d love to see, however we can’t see, however we can’t see it because of proti protri proprietary uh protections that the FDA is giving to Burzynski, right ?”
“They’re not sharing his trial designs because they are his trial designs, right ?”
“That the makeup of his drug that he’s distributing are his, uh design, and his intellectual property“
“So the FDA is protecting him, uh from outside scrutiny“
====================================== DJT – Bob, you make it sound like it’s part of some grand “conspiracy” between Burzynski and the FDA to keep information from “The Skeptics™” [3]
——————————————————————
21CFR601
Subpart F–Confidentiality of Information
Sec. 601.50
Confidentiality of data and information in an investigational new drug notice for a biological product
(a) The existence of an IND notice for a biological product will not be disclosed by the Food and Drug Administration unless it has previously been publicly disclosed or acknowledged
====================================== BB – “While you may imagine that that, that that the FDA is is somehow antagonistic toward him“
“They’ve given him every opportunity, over 60 opportunities to prove himself worth uh their confidence and hasn’t“
====================================== DJT – Bob, that certainly explains the 9/3/2004 and .10/30/2008 ODD’s and phase 3 clinical trial approvals by the FDA – NOT [1-2]
====================================== 1:05:00
—————————————————————— 1:42:00
—————————————————————— BB – “I don’t, the thing is though that, that that’s a inver, shifting the burden of proof off of Burzynski”
“Burzynski has to prove them wrong, has to prove him right”
“The FDA is not there to say this doesn’t work”
====================================== DJT – Bob, who initiated and put into place the clinical trial hold ?
Burzynski ?
FDA ?
Both ?
====================================== 1:43:30
—————————————————————— BB – “So, I mean, honestly, um, saying “Well, when the F, FDA tells you that it doesn’t work, the FDA’s never gonna say that because that’s not their job“
—————————————————————— 1:44:00
—————————————————————— BB – “That’s not an option, because they’re never gonna do it“
“They relinquish, a lot of authority, over to Burzynski, and his Institutional Review Board, which, I would mention, has failed 3 reviews in a row” ====================================== Bob, where are the “final reports” for those “3 reviews” ? ====================================== BB – “Right ?”
“It is Burzynski’s job to be convincing”
“It is not our uh, uh, it it it he hasn’t produced in decades“
“In decades”
“In hundreds and hundreds of patients, who’ve payed to be on this”
“Hell, we’d we’d we’d like a prelim, well when you’re talking about something that is so difficult as brainstem glioma, that type of thing gets, really does in the publishing stream get fast-tracked there”
====================================== DJT – Bob, Burzynski has provided numerous phase 2 clinical trial preliminary reports, which our #fave oncologist has chosen to ignore [4]
====================================== BB – “they test it”
“Yeah, and they they they want uh, that was evidence of fast-tracking is what, that rejection was uh e was very quickly“
====================================== DJT – Bob, have you checked The Lancet Oncology [5] to see what was so much more important than Burzynski’s “phase 2 clinical trial Progression-Free Survival (PFS) and Overall Survival (OS) re patients 8 – 16 years after diagnosis, results” [6] and the Japanese antineoplaston study ? [7]
====================================== BB – “So, how long will it be before Burzynski doesn’t publish, that you decide that uh perhaps he’s he‘s, doesn’t have the goods ?“
“Um, so, uh, uh again, the FDA is not the arbiter of this“
“It’s ultimately Burzynski”
“You’ve been speculating about what the FDA’s motivation are like crazy”
“Why not speculate about Burzynski a little bit”
====================================== DJT – Well, how have I been speculating ?
====================================== 1:46:00
—————————————————————— BB – “Well actually I’m not even asking you to speculate about Burzynski, I’m only asking you to tell me, how long would it take, uh how, for him to go unpublished like this, um, for this long, before you would doubt it ?” ====================================== DJT – Note how, above, without proving it, Bob claimed “at every turn you’re invoking the FDA as being obstructionist”, and now, directly above, again, without proving it, Bob claims “You’ve been speculating about what the FDA’s motivation are like crazy” —————————————————————— DJT – what the journals keep saying, in response
====================================== BB – “What ?”
====================================== DJT – You know, are they going to give The Lancet response, like they did in 2 hours and such, saying, “Well, we think your message would be best heard elsewhere,”or they gonna gonna give The Lancet response of, “Well, we don’t have room in our publication this time, well, because we’re full up, so, try and pick another place”?
====================================== BB – “But these but but but that doesn’t have any bearing on“
“That doesn’t”
“Oh I’m not asking you how long, how long, would it take you for you to start doubting whether or not he has the goods ?“
“How long would it take ?”
“It’s a it’s a it’s a question that should be answered by a number uh uh months ?“
“Years ?”
“How long ?”
“It’s been 15 years already”
====================================== DJT – Well, you like to jump up and down with the “15 year” quote, but then again I always get back to, Hey, it’s when, when the report, when the clinical trial is done
—————————————————————— 1:47:06
—————————————————————— DJT – Not that he’s been practicing medicine medicine for 36 years, or whatever, it’s when the clin, clinical trial was done
====================================== BB – “I could push it back to 36 years”
“He hasn’t shown that it works for 36 years”
“I can do that”
“I was being nice” ====================================== DJT – Note how Bob acts like he’s been hit with “The Stupid Stick”
If he wants to go back “36 years”, I can refer back to 1991 (11/15/1991) – Michael J. Hawkins, M.D., Chief, Investigational Drug Branch, Department of Health &Human Services (HHS), Public Health Service, National Institutes of Health (NIH), National Cancer Institute (NCI), sent a 1 page Memorandum Re:
Antineoplaston to Decision Network, which advised, in part:
“It was the opinion of the site visit team that antitumor activity was documented in this best case series and that the conduct of Phase II trials was indicated to determine the response rate”[8] —————————————————————— DJT – The FDA A believes there is evidence of efficacy
====================================== BB – “Perhaps based on bad phase 2”
====================================== DJT – Well, we don’t know that
We don’t have the Freedom of Information Act information —————————————————————— DJT – Remember, Bob is the one who told me during the 9/28/2013 Google+ Burzynski Discussion Hangout:
“You’re you’re you’re assuming”
“You’re you’re you’re assuming that”
“You’re assuming that”
“Um, I’m not assuming that”
“There is a correct answer here”
“You don’t know”
“You don’t know”
“You need to look into it”
“Alright ?”
“Before you dismiss it you have to look into it”
“Everytime somebody throws uh uh something to me, I have to look into it”
“That’s just, it’s my responsibility as a reader”
“T t and what I would honestly expect and hope, is that you would be honest about this, to yourself, and and and that’s the thing we don’t, we often don’t realize that we’re not being honest with ourself“
“I try to fight against it, constantly”
Bob just ASSUMED that the FDA approved phase 3 clinical trials for Burzynski “Perhaps based on bad phase 2”, but tells me NOT to ASSUME ? ====================================== BB – “He withdrew”
“He withdrew the the phase 3 clinical trial”
“I that before recruiting,
although I’ve seen lots of people say they were on a phase 3 clinical trial“
“I wonder how that happened”
====================================== DJT – Well, we know what happened in the movie because Eric particularly covered that when they tried to get what, what, was it 200 or 300 something institutions to take on a phase 3, and they refused
====================================== 1:48:01
—————————————————————— BB – “Uh did do do you think that if they thought that he was a real doctor that they all would have refused like that ?“
====================================== DJT – Well, Eric gave the reasons that they said they would not take a particular uh phase 3
And so using that excuse that you you just gave there, I’m not even gonna buy that one, because that’s not one of the reasons —————————————————————— Note how Bob pulls out the old “if they thought that he was a real doctor” line ?
Is Bob now claiming that Burzynski is NOT even a “real doctor” ? ====================================== BB – “He’s changed things”
====================================== DJT – Eric said they gave
====================================== BB – “That The Lancet is a top-tier journal like New England Journal of Medicine“
“It’s basically be, besieged by uh 100′s of people submitting their, their, their reports”
“Um, it’s just, you know, let’s say he, someone has such a thin publishing record as Burzynski does, do you think that it’s likely that he will ever get in a top-tier journal ?“
“What about the the Public Library of Science?”
“It’s not the only journal there”
“What about BMC Cancer ?”
“There’s lots of places that he can go”
====================================== DJT – We’ll I’m
====================================== BB – “Um, and he doesn’t seem to to have evailed himself of that, as far as I can tell“
“And I would know because he’d get rejected, or he’d be crowing, you know”
—————————————————————— 1:49:02
—————————————————————— BB – “Either way, he’s gonna tell us what happens”
“He told us what happened with The Lancet, you know”
“I don’t have any evidence that suggests to me that he’s even trying” ====================================== Note how Bob refers to Burzynski’s numerous publications as “such a thin publishing record”
Bob, do I need to count all of these for you ? [9] —————————————————————— DJT – Well, I’m, I’m sure that they’re going to keep you appraised just like they have in the past, just like Eric has done in the past
So
I mean, we’ll see what happens with the Japanese study [7]
====================================== BB – “So let’s go back to this”
“How long will it take ?”
“How long will it take before you, the Japanese study’s interesting too because we should be able to find that in the Japanese science databases, and we can find, we can’t find it at all“
“We can’t find it anywhere”
“And, and those are in English, so it’s not a language problem“
“We can’t find that anywhere”
“We’ve asked”
“We asked Rick Schiff, for, for that study”
“And, and it hasn’t come to us“
“He is now I believe on the Board of Directors, over there”
—————————————————————— 1:50:00
—————————————————————— BB – “He should have access to this”
“We can’t get it”
====================================== Bob, did you ask:
1. Annals of Oncology 2010;21:viii221 ?
2. European Society for Medical Oncology (ESMO), Colorectal cancer, Abstract: 3558, May 17, 2010 ?
3. Colorectal Cancer Association of Canada, COLORECTAL CANCER RESEARCH, Month Ending June 19, 2009
11. Antineoplaston Therapy Doubles 5-Year Survival Rate Following Curative Resection of Hepatic Mets (May 27/09) pg. 5 of 20 ?
4. Kurume University School of Medicine (Japan) Department of Surgery ?
5. Hideaki Tsuda ? [7]
====================================== BB – “How how long will it take before you recognize that, nothing is forthcoming ?”
“How long would that take ?”
====================================== DJT – Well that’s like me asking “How long is it going to take for y’all’s, y’all‘s Skeptics to respond to my questions ?”
Because y’all haven’t been forthcoming
====================================== BB – “Well, I mean, were talking about a blog here“
“We’re talking about life”
“No, we’re talking about a blogger’s feelings in that case“
“In in this case we’re talking about, 1,000′s of patients, over the course of of of generations, you know”
“This is important stuff”
“This is not eh eh equating what’s happening to to patients with what’s happening to you is is completely off-kilter as far as I can tell“
“It’s nothing”
“It’s nothing like you not getting to say something on my web-site”
“You know”
“This is they they have thrown in with Burzynski, and they’ve trusted him, and he’s produced nothing“
“Nothing of substance”
—————————————————————— 1:51:00
—————————————————————— BB – “Nothing that that has made all of that um, uh, n nothing th th th that uh his peers would take seriously”
“The other thing that that that strikes me now is that, you know, you you you you keep saying that, well Eric is going to to share things with you”
“Does it ever concern you eh uh eh occur to you that Eric might not be reliable ?” ====================================== Bob, do you want to have a contest to determine which of you is more “reliable” ? ====================================== DJT – Well, he gave you The Lancet information and he posted the e-mail in the movie, and Josephine Jones posted a copy of it [6]
====================================== BB – “He then, and then he”
“And then he he, you know, the the the the dialogue that sprung up around that was, well see, he’s never going to get to get published”
“Well you’re just setting yourself up for wish fulfillment”
“You want him to be, persecuted, so you are ecstatic when he doesn’t get to publish, which is unfortunate for all the cancer patients, who really thought that one day, all the studies were going to be published”
—————————————————————— 1:52:00
====================================== DJT – Well, y’all are free to, you know, claim that all you want, because I don’t always agree with Eric, and uh, he’s free to express his opinion
====================================== BB – “Where has Eric been wrong ?”
====================================== DJT – Well I don’t necessarily believe, what Eric would say about, you know, The Lancet that refused to publish the 2nd one, for the reasons he stated, and which y’all have commented on, including Gorski
You know, I don’t necessarily agree with that
I am more agreeable to y’all, saying that, you know, they’re busy, they’ve got other things to do, but I’m kind of still laughing at their 1st response which he showed in the movie about how they felt about, you know his results would be better in some other publication
I thought that was kind of a ridiculous response to give someone
====================================== BB – “It’s it’s it’s it’s a form letter“
“You know”
“They’re just saying, “No thanks””
““Thanks, but no thanks” is what they were saying, in the most generic way possible”
“Like I said, they’re besieged by researchers trying to publish“
—————————————————————— 1:53:05
====================================== DJT – Well you would think that if its a form letter they would use the same form that they used the 2nd time
You know, they didn’t use the same wording that they used the 1st time
I would have think that, you know, their 2nd comment
====================================== BB – “So, so, possibly”
“So possibly what you are saying is that they in fact have read it, and after having read it they’ve rejected it”
“Is that what you’re saying ?”
“Because that’s what peer-review is”
====================================== DJT – Nah, I’m not saying that they did that all
I’m just sayin’, you know, that they gave, 2 different responses, and I would think that the 2nd one they gave
====================================== BB – “Do you know it was the same editor, that it came from the same desk ?”
“You can’t make that assumption that that the form letter will be the same form letter every time”
“I mean you just can’t“
“I mean in in some ways we have a lot of non-information that you’re filling in, with what you expect, as as opposed to what’s actually really there, and I I I just think you’re putting too much uh stock in one uh, uh, in in in in this uh the publication kerfuffle“
—————————————————————— 1:54:16
—————————————————————— BB – “Um”
====================================== DJT – Well I find it funny, something along the lines of, you know, “We believe your message would be received better elsewhere, you know
I don’t see that as a normal response, a scientific publication would send to someone trying to publish something
I mean, to me that sounds, like, if you’re doing that, and you’re The Lancet Oncology, maybe you need to set some different procedures in place, ‘cuz you would think that with such a great scientific peer-reviewed magazine, that they would have structured things in as far as how they do their operations
====================================== BB – “Well, not necessarily“
“I’ve been in any # of professional groups where the organization is just not optimal, and publications certainly th there are all sorts of pressures from all sorts of different places”
—————————————————————— 1:55:08
—————————————————————— BB – “I I have no problems whatsoever with seeing that this might not be completely uh um uh streamlining uniform processes as possible“
“The fact that it’s not uniform, doesn’t have anything to do with Burzynski not publishing, not producing good data”
“Not just going to a, you know, god, even if, even if, let’s put it this way, even if he went to a pay to play type publication where you have to pay in order to get your manuscript accepted; and he has the money to do this, it wouldn’t take that much, and he were to put out a good protocol, and he were to show us his data, and he would make his, his his stuff accessible to us, then we could validate it, then we could look at it and say, “Yeah, this is good,” or “No, this is the problem, you have to go back and you have to fix this””
“Right ?”
“So we really, every time we talk about the letter that he got, yeah that doesn’t have much to do with anything, really”
—————————————————————— 1:56:02
—————————————————————— BB – “We wanna see the frickin’ data”
“And if he had a cure for some cancers that otherwise don’t have reliable treatments, he has an obligation to get that out there anyway he can“
“And if if peer-review doesn’t, you know, play a, if peer-review can’t do it, you know, isn’t fast enough for him, then he should take it to the web, and he should send copies out to every pediatric, uh, you know, oncologist that there is“
“That’s the way to do it”
====================================== DJT – Well, I’m sure, I’m sure Gorski would have a comment about that, as he’s commented previously about how he thinks uh Burzynskishould publish
====================================== 1:57:10
—————————————————————— BB – “It’s the, it’s the data itself“
“If if Burzynski is is, is confident in his data, he will put it out there“
“Right ?”
“One way or the other”
====================================== DJT – Like I said before
Like I said before on my blog, you know, even if Burzynski publishes his phase 2 information, Gorski can just jump up and down and say, “Well, that just shows evidence of efficacy, you know, it’s not phase 3, so it doesn’t really prove it”
—————————————————————— 1:58:04
—————————————————————— DJT – So then he can go on, you know, for however many years he wants to
====================================== 2:01:00
—————————————————————— BB – “Um, almost no treatment goes out without trials“
“Massive amounts of data are required” ====================================== Bob, do you think that’s the 2.5 million pages of clinical trial data that Fabio said Burzynski sent to the FDA ? [10] ====================================== 2:02:00
—————————————————————— BB – “Uh, in in in that sense, you know, uh all the the the, you know, kind of back-peddling and and and trying to defend him is is going to, not going to help his case at all“
====================================== Bob, exactly where did I exhibit any “kind of back-peddling” ?
====================================== 2:03:03
——————————————————————
BB – “You are, honestly as far as I can tell you are doing the um, you know, you’re you’re ah throwing up uh, uh, uh, you’re giving me another uh invisible dragon in the garage, um”
====================================== DJT – Well y’all, y’all can call things what y’all want
I mean, y’all can give these, fallacy arguments and all that garbage that y’all like, because that’s what y’all like to talk about instead of dealing with the issues
I mean, Gorski doesn’t want to deal with the issues
====================================== 2:04:11
—————————————————————— BB – “Okay, so”
“What you’re telling me is that you trust the FDA to to be able to tell you when he’s not doing, good science, but also that you don’t trust the FDA”
“Do you see an inherent conflict there ?”
====================================== DJT – How did I say I, I didn’t trust them ?
====================================== BB – “Well, when I, whenever I would ask about, like, why would these trials aren’t happening uh and, you know, you say well the the FDA’s arranged it“
“The FDA’s in control”
“They sign off on these things”
“But they’re they’re they’re they’re at the same that they’re, they’re trustworthy they’re also not trustworthy depending on what you need for the particular argument at the time“
—————————————————————— 2:05:12
—————————————————————— BB – “You’re suggesting that they’re untrustworthy”
====================================== DJT – No, I’m just sayin’ that I’ve raised questions and none of The Skeptics wanna to uh talk about ‘em [11]
====================================== BB – “Do you know that the FDA pulled out of the prosecution ?”
“Did you know that the FDA pulled out of the prosecution um of his criminal case, because they were backing a researcher ?” ====================================== Bob, would that “researcher” be Dvorit D. Samid, who was in Burzynski: Cancer is Serious Business (Part I) ? —————————————————————— DJT – Well, we know a lot stuff they did, but that still doesn’t impress me that they pulled out of the prosecution
I mean
====================================== BB – “Yeah, the the the it wasn’t the FDA who was pressing charges, it was a Federal prosecutor“
====================================== DJT – Right
====================================== BB – “Right”
“And and, they declined to provide information that the prosecution needed“
“That’s important”
“That that that’s really important“
“That he has been given the benefit of the doubt, and he has come up wanting, for decades now”
====================================== DJT – Well I find it interesting a lot of this uh, a lot of these letters that were provided between, you know, the government and Burzynski, when the uh phase 2 study was going on, at the behest of the NCI
You know, anybody who reads that stuff knows, that when you just ignore the person that’s been doing, do treating their patients for 20 something years, or close to 20 years, and you change the protocol without his approval, and you don’t use the drugs in the manner that he knows works
====================================== 2:10:15
—————————————————————— BB – “One of the interesting things about Doubting Thomas that I think you should definitely consider for yourself, is that at some point, when faced with the real opportunity to prove or disprove his assertions, he doubted himself”
“And that’s important”
“And that’s where you’re falling short in the analogy”
====================================== DJT – Well, I think The Skeptics, Skeptics are falling short because, you know, they don’t own up to
====================================== BB – “I’ve laid out exactly what it would take for me to turn on a fucking dime”
“I have, I have made it abundantly clear what I need“
“Gorski has made it abundantly clear”
“Everybody else, Guy, and David, and Josephine Jones, uh, the Morgans, all of them have made it abundantly clear, what it would take to change our minds, and you’ve never done that”
—————————————————————— 2:11:02
—————————————————————— BB – “And even in this, this was an opportunity to do that“
“To come up with a basis for understanding, where it’s like, you know what, If we can show this, you know, if we can show a this guy, that, that, there, that his standards are not being met, then, you know, we could possibly have some sort of ongoing dialogue after this”
====================================== DJT – So I can say that since the Mayo Clinic (Correction: M.D. Anderson) finished their study in 2006, and it took them until 2013, to actually publish it, then I can say, well, Burzynski finished his in 2009, which was 3 years later, which would give Burzynski until 2016
====================================== BB – “Why wasn’t that study”
====================================== DJT – for me to make up my mind (laughing)
====================================== BB – “Why wasn’t that, that that that, still . . again, it it doesn’t seem really to to approach the the the, main question here“
“You know, um . . what are the standards that you have that it isn’t, what are your standards to show that it isn’t efficacious ?“
—————————————————————— 2:12:05
====================================== DJT – Well I can say, well I’m going to have to wait, the same amount of time I had to wait for Mayo (Correction: M.D. Anderson) to publish their study; which was from 2006 to 2013
====================================== BB – “Why was the Mayo”
“Why was the Mayo (Correction: M.D. Anderson) study delayed ?” ====================================== Note how Bob ASSUMES that the publishing of the final results of the M.D. Anderson study were delayed —————————————————————— DJT – How do you know it was delayed ?
====================================== BB – “Well you said you had so many years before you finish it and go in”
====================================== DJT – I mean, has anybody
====================================== BB – “Why, why did it take so long ?“
====================================== DJT – done a review of when a clinical trial is studied, and completed, and how long it took the people to publish it ?
You know
If they could point to me a study that’s done that, and say, well here’s the high end, here’s the low end of the spectrum, here’s the middle
====================================== BB – “I have something for you, okay ?”
“Send me that”
“Could you send me that study the way that it was published because um, just just send me the final study, um, to my e-mail address”
====================================== DJT – Sure
====================================== BB – “Um, because, I can ask that question of those researchers, why was this study in this time, and what happened in-between”
—————————————————————— 2:13:03
—————————————————————— BB – “Why did it take so long for it, for it to come out”
====================================== DJT – Sure, but that’s not gonna, you know like, answer an overall question of, you know, somebody did a comparative study of all clinical trials, and, when they were finished, and at, and when the study was actually published afterwards
You know, that’s only gonna be one, particular clinical study
====================================== BB – “Right”
“Um, but it it would, perhaps, answer the question; because you’re using it as an example on the basis of which to dismiss criticism, whether or not, uh, it is the standard, and therefor you’re allowed to accept that Burzynski hasn’t published until 2016, or, um, it’s an anomaly, which is also a possibility, that most stuff comes out more quickly“
====================================== DJT – Well, we know that the Declaration of Helsinki doesn’t even give a standard saying, “You must publish within x amount of years,” you know ?
So, I’ve yet to find a Skeptic who posted something that said, “Here are the standards, published here”
====================================== 2:14:07
—————————————————————— BB – “I I, yeah, the other thing that David James points out is you know, why 2016 when he’s had 36 years already ?“
====================================== DJT – Again, we get back to, when the clinical trial is finished, not when Burzynski started
====================================== BB – “Treating people”
====================================== DJT – I mean, you would expect to find a results to be published after, the final results are in
====================================== BB – “You would expect the Burzynski Patient Group to be a lot bigger after 36 years, and in fact is
====================================== DJT – You would expect some people would want to have confidentiality, and maybe not want to be included
====================================== BB – “So, if you’re unsure about this stuff, if you’re unsure about the the time to publication, why are you defending it so hard, other than saying, “I don’t know, I really need to”
====================================== DJT – Why am I unsure ?
====================================== BB – “Uh about the
====================================== DJT – (laughing) I just gave you an example
====================================== BB – “The reasons, the reasons for which that he’s, no, why are you defending him so hard, when you’re unsure ?
—————————————————————— 2:15:02
====================================== DJT – Oh, who said I was unsure ?
I just gave you an example
—————————————————————— Note how Bob ASSUMES that I’m “unsure” when I had the same answer since 0:32:07 [12]
When I mentioned Ben and Laura Hymas to Bob Blaskiewicz during the Saturday Google+ Hangout, and suggested that I should compare it to the patient stories he “embellishes”, he suggested I review his patient stories instead
So what am I doing ?
I’m reviewing the patient story of Laura Hymas
However, my goal is to provide a perspective of her mood, health, treatment, and support network, so that readers can get an idea of what someone with cancer; who does not yet know that they have cancer, may be experiencing, so if they note similar experiences or symptoms in themselves or others, they will know that they most likely should seek professional medical assistance, and also be able to use it to compare to other “patient stories”
Laura Hymas: Kent, United Kingdom
Ben: fiancée
Jacob: son
—————————————————————— (I will be doing a little data clean-up)
Note how I do NOT “embellish” Laura’s story by adding extemporaneous commentary like Bob Blaskiewicz
—————————————————————— 2005 – Laura met Ben: knew instantly wanted to start family with him []
When first met Laura 3 years ago beautiful, bright and energetic girl [2]
loyal, kind hearted and has a smile so infectious that it can light up any room [2]
——————————————————————
started planning to marry and grow family [2]
======================================
====================================== MOOD
======================================
====================================== 1/2009 – Laura pregnant[]
a) delighted to be having a baby but pregnancy wasn’t easy []
b) suffered terrible morning sickness so severe had to be admitted to hospital []
—————————————————————— 4/2009 – morning sickness stopped at 16 weeks, from then on felt exhausted []
—————————————————————— 9/2009 – Jacob born[] [2] []
9/2009 – []
a) felt like happiest woman in the world
b) began planning to marry and grow family
c) adored being a mum []
d) knew wasn’t depression because felt so happy being a mum []
—————————————————————— 9/2009 – 12/2010 – []
a) felt never fully recovered after the birth and over 15 month period
b) certain wasn’t depressed
c) was so happy but exhausted all the time
d) convinced there was something wrong and so frustrating not knowing what
e) so tired even good nights sleep couldn’t get up in the morning to take care of Jacob when Ben went to work; stay in pajamas all day
f) at wits end
g) causing a lot of stress at home
—————————————————————— 5/27/2010 – []
a) felt like luckiest woman alive []
b)son Jacob just celebrated 1st birthday and she and fiance Ben were busy planning wedding[]
—————————————————————— 10/2010 – frustrating as kept wondering if was imagining it [[
—————————————————————— 12/24/2010 – []
a) no one expected anything serious so I just popped along with Jacob []
b) totally unprepared for what doctor said []
c) When doctors dropped their bombshell, just broke down []
d) happiness was shattered
e) thought of Jacob not having me here is heartbreaking []
f) will do anything to see him grow up and determined to beat this []
g) can’t accept going to die []
h) was in pieces []
i) immediately rang mum, Vanessa, who hurried to hospital to comfort her []
j) strange relief to know hadn’t imagined all symptoms, never expected something so terrible []
k) reassured when read stories saying people did live normal lives with this sort of tumour []
l) huge relief []
—————————————————————— 12/2010
a) felt couldn’t accept there were no other options []
b) felt confident []
c) so angry but had no choice []
—————————————————————— 2/2011 – []
a) Being unable to care for son made feel so depressed
b) felt like life was slipping away
c) No words can describe how much this news and period of time affected us as a family
—————————————————————— 4/2011 – []
a) had devastating effect on her as young mum, and affected every part of lives because at moment cannot enjoy time and plan future like any other normal young family []
b) everyone was in for further shock []
c) left reeling when doctors said tumour had grown rapidly []
d) couldn’t believe it []
—————————————————————— 5/27/2011 – confident will get there and beat this [9]
—————————————————————— 6/2011
a) felt very confident, almost empowered []
b) Given situation felt had nothing to lose []
c) astounded by generosity and kindness of general public []
—————————————————————— LAURAS TUMOUR [1]
—————————————————————— news hit very hard and also devastated her family and friends [1]
Until something like this happens, you dont realise how much of an effect it has [1]
fun loving girl who’s taken to motherhood like a duck to water, son is so lucky to have her because she always puts him first [1]
illness crept up slowly and was affecting long before diagnosis because it was eating away at health and energy which was so frustrating for when wanted to be energetic mum doing loads of things with Jacob [1]
awful diagnosis had positive and negative effect, fact now knows what was wrong is huge relief because knew deep down something was wrong, but its awful news at same time [1]
—————————————————————— 6/27/2011 – Anyone who has been or is going through a life threatening illness will understand power of positivity and support network of friends and family [15]
—————————————————————— faces race against time to travel to US for treatment she hopes will save her life []
—————————————————————— 7/8/2011 – [18]
helped stay positive and strong as a family even in difficult times [18]
worried how long it would take before could start treatment [18]
has been so strong and positive throughout journey, im so proud of her for being such an amazing fiancee and an amazing mum to Jacob – not a day goes by where she doesnt make us smile and keep our home life normal for Jacob at this important time in our little mans life…a really special person [18]
—————————————————————— 7/28/2011 – had agonising wait for results on Thursday
—————————————————————— 8/3/2011 – [21]
MIXTURE OF FEELINGS THIS MORNING [21]
never happy with just sitting around [21]
spent months researching all kinds of brain tumour treatment protocols looking for most successful, non harmful type of treatment currently available in the world and even speaking to past patients about their experiences, led us to front door of controversial Dr. Burzynski’s clinic in Houston this morning…somewhere that gives us all a bit of Hope [21]
Driving to clinic we were nervous about how today would be but as soon as we walked through the door we were met with friendly faces and felt instantly at ease [21]
left clinic feeling relaxed, like were in right place and the day had gone great, been prescribed treatment she wanted and with any luck will be having 1st dose this Friday [21]
—————————————————————— 8/8/2011 – [3]
a) tiredness
b) like having another baby!
c) it’s really worth it [3]
—————————————————————— 8/8/2011 – future was still very uncertain [55]
at times a whirlwind, extremely stressful [55]
—————————————————————— 10/2011 – [10]
a) times when feel like giving up [10]
b) only have to look at Ben and Jacob to know life’s worth fighting for [10]
c) determined to give treatment my best shot [10]
—————————————————————— 1/10/2012
bit of a difficult week this week, hadn’t been sleeping well due to MRI scan booked [40]
After such good result last time where tumour shrank so much were feeling so positive for few weeks after, as next scan gets closer start to worry about silly things, every time has bad day where feels exhausted, worry tumour suddenly started to grow again [40]
next day have really good day…. might have epileptic seizure, though has a LOT less of them now and aren’t as strong still worry means tumour growth [40]
get to few days before next scan even sillier things start to cross mind like “I’ve eaten lots of chocolate and had a few KFC’s since last scan was my diet really bad and hasthat made it grow!?!” [40]
all sorts of worries will go through mind at this point, like anyone else in this situation will understand [40]
trying to describe just other day what its like being told has malignant brain cancer [40]
(still hate those words) [40]
its impossible to describe but so awful makes you feel like you’re character in film “Saw” [40]
Like someone has put time bomb inside your head, it will grow fast and more it grows you will slowly become more disabled, doctors tell us that current available medicines can only slow it down..there are never any survivors 12-14 months (1 year – 1 year 2 months) from diagnosis is prognosis [40]
Eventually it will win, and you will lose the fight [40]
Sometimes in morning wake up and for few seconds forget have one, everything is normal, then reality hits again [40]
so anxious at this point, think they could tell [40]
WOW [40]
burst into tears [40]
so shocked, amazing start to 2012 [40]
—————————————————————— 1/13/2012
Every time has bad day where feels exhausted, worry tumour suddenly started to grow again [43]
fret before a scan [43] eat bad food [43] made stay up late some nights watching TV instead of resting [43]
all sorts of worries will go through mind at this point [43]
diagnosed with tumour just over year ago, describes what it’s like living with malignant brain tumour [43]
it’s so awful it makes you feel like a character in the film ‘Saw’ [43]
like someone has put time bomb inside head, it will grow fast and more it grows you will slowly become more disabled [43]
Eventually it will win and you will lose the fight [43]
feel fortunate given chance to at least try treatment [43]
About improvement, burst into tears [43]
so shocked, what an amazing start to 2012 [43]
—————————————————————— 2/8/2012 – [47]
big milestone of a day [47]
just wanted to wear something to cover the site where tumour is, area has biopsy scar and hair is much thinner from radiation [47]
—————————————————————— 2/21/2012 – had 6 weekly MRI scan tuesday – scary time as always [48]
—————————————————————— 3/25/2012 – taking small steps but feeling more like old self all the time [49]
—————————————————————— 4/5/2012 – “scan week” always stressful time [50]
—————————————————————— 5/19/2012 – diagnosed 17 months ago now and even on hardest days never given up hope [52]
—————————————————————— 6/22/2012 – [53]
Everything takes toll eventually [53]
feel fine now and have caught up on sleep, for 6 days while off treatment awaiting blood culture results was almost as if nothing was wrong, in perfect health so breath of fresh air to have no IV bag to carry around [53]
fleeting moment of “normality” for our family again [53]
—————————————————————— 7/4/2012 – [54]
been emotional rollercoaster, when look back over past year and a half [54]
has certainly been a life changing experience for us and all of our family [54]
extreme stress of situation is starting to wear off and starting to feel able to relax a little now and do “normal” things most families probably take for granted like planning ahead into future rather than living day to day [54]
don’t think its possible to describe personal experience like this, much like amazing feeling of becoming a parent you have to experience it first hand to really know what its like [54]
—————————————————————— 8/8/2012 – When look back feel like looking at someone else’s life [55]
—————————————————————— 8/29/2012 – [55]
its been well worth all the hard work and effort [55]
Mentally stayed so strong despite over past 12 months (1 year) having not slept full night due to infusions – calculated has had at least 2150 ninety minute infusions to date [55]
These days, life is much more hopeful and slightly less stressful [55]
—————————————————————— 11/27/2012 – [56]
fight this every day for almost 2 years without ever once faltering or giving up [56]
Jacob has been here to give a reason to be strong and his unconditional love has been a huge part of healing process [56]
couldn’t be happier [56]
—————————————————————— 1/2013 – Dr Burzynski has given me and my family the future back and I am eternally grateful [3]
appreciate every minute of every day [3]
I’ll finish treatment but have my life back [3]
Who knows what tomorrow holds ? [3]
======================================
====================================== HEALTH
======================================
======================================
6/2011 – [47]
whilst having radiotherapy lost all hair which fell out very quickly – in a matter of hours – too quickly to really have any time to get used to the idea [47]
(if thats possible) [47]
for woman it can be a really big part of their identity, especially if you’re just 25 years old [47]
——————————————————————
1/12/2012 – [40]
When has scan every 6 weeks to find out how treatment is going go through different emotional stages [40]
After such good result last time where tumour shrank so much were feeling so positive for few weeks after, as next scan gets closer start to worry about silly things, every time has bad day where feels exhausted [40]
next day have really good day…. might have epileptic seizure, though has a LOT less of them now and aren’t as strong still worry means tumour growth [40]
eat bad food, stay up late some nights watching TV instead of resting, dragged round country parks for walks [40]
(probably in hind sight exercise is very good right now) [40]
——————————————————————
1/13/2012
has good days and bad days [43]
Every time has bad day where feels exhausted, worry tumour suddenly started to grow again [43]
next day have really good day … then might have epileptic seizure, even though has a LOT less of them now [43]
4/5/2012 – feeling really good apart from sinus infection unrelated to tumour or medication [50]
—————————————————————— 6/15/2012 – suspected Hickman Line infection, really exhausted and had cold shivers [53]
——————————————————————
======================================
====================================== TREATMENT
======================================
====================================== 1/2009 – suffered terrible morning sickness so severe had to be admitted to hospital [10]
—————————————————————— 5/2009 – morning sickness stopped at 16 weeks [10]
—————————————————————— 9/2009 – Jacob born [2] + [10]
visited GP dozens of times [10]
At 1st doctor thought was baby blues but months after Jacob born, still felt tired, diagnosed postnatal depression [10]
came home with anti-depressants [10]
knew wasn’t depression because felt so happy being a mum [10]
didn’t even take the pills [10]
—————————————————————— 5/27/2010 – [10]
—————————————————————— 10/2010 – while family, from Rochester, Kent, were in Lanzarote, developed weakness in right arm [10]
At first thought might have slept awkwardly or pulled a muscle [10]
Some days it was there, some days it wasn’t [10]
Other times felt tingling in fingers [10]
—————————————————————— 11/2010 – [2]
started to lose feeling and co-ordination in right arm which prompted an MRI scan at hospital [2]
health slowly declined over past year, never fully recovered after having Jacob and mis-diagnosed with range of things including exhaustion [2]
breakthrough diagnosis came after another visit to GP’s [10]
had a cold couldn’t shake off and went to see if needed antibiotics [10]
saw different doctor and he could see from notes sometimes been at surgery every week [10]
kept list of symptoms on iPhone [10]
handed it to him and he looked concerned [10]
been visiting surgery with different symptom every time [10]
When he saw them together, warning bells rang [10]
Although he didn’t say he suspected a brain tumour, he sent for tests [10]
—————————————————————— 12/24/2010 – results arrived [2] + [10]
few days later called back for results [10]
had brain scan but also had blood tests and thought was going to get those results [10]
had found something on scan [10]
huge tumour [10]
doctors broke news has rare, inoperable brain tumour [10]
told there’s no cure and it’s growing [10]
bad news was tumour, known as an oligodendroglioma, was inoperable – deep in the brain and removing it would be too dangerous, so all doctors could do was monitor it [10]
diagnosed with rare Brain Cancer and biopsy revealed is most aggressive type of brain cancer, not only is it inoperable because of size and location but also deemed incurable using available cancer therapies in UK, which can only at best slow down growth [2]
Tests showed was low-grade, slow-growing tumour [10]
explained could have had it for 20 years [10]
reassured when read stories saying people did live normal lives with this sort of tumour [10]
average life expectancy poor, fewer than 1 in 100 people diagnosed live for 5 years, this cancer is common in people over 50 [2]
(approx 5,000 diagnosed annualy in UK) [2]
very rare in Laura’s age group, less than 50 cases reported every year in UK and no known cause [2]
told by doctors in UK that brain tumour was inoperable [43]
set out to find an alternative cure [43]
find clinic in Houston, Texas, run by Dr. Burzynski, that pioneers new treatment for malignant brain cancer Laura has [43]
clinic in America has pioneering treatment proven very effective against this type of cancer without harming the body [2]
clinic has been running for over 30 years and has been able to not only stabilise, but potentially cure this awful disease in some cases [2]
treatment not available via NHS [2]
most patients require anything from 2 to 4 years treatment [2]
diagnosed with type of brain cancer for which there is no cure in Britain and wasn’t expected to live more than 12 months (1 year) [37]
Since diagnosed has developed epilepsy and has multiple seizures a day [37]
right arm almost paralysed so has been unable to pick up Jacob or bathe him [37]
—————————————————————— 2/2011 – right arm virtually paralysed [10]
also developed epilepsy and having seizures every day [10]
—————————————————————— 4/2011
biopsy [50]
tumor turned agressive [53]
next batch of test results arrived [10]
results of scan and biopsy [10]
doctors said tumour had grown rapidly [10]
turned into worst form of brain cancer – fast-growing, high-grade glioblastoma multiforme [10]
while they could give chemo and radiotherapy to try to shrink it and prolong life, was nothing more they could do [10]
didn’t have time to lose [10]
No one knows how long has left to live – do know has most aggressive form of brain cancer [10]
If did nothing could be 6 months to a year [10]
after painstaking research found clinic in Houston, US, which offers treatment still under trial and NHS will not fund [10]
In States, critics believe it’s expensive, with no proven results [10]
read stories claiming it worked for some [10]
sent the clinic notes [10]
treatment based on clinic’s 25 years of research showing people with the cancer are lacking tumour suppressor [10]
In people without cancer substance kills growing cancers [10]
clinic doctor believes replacing it with drug will trigger body’s immune system to rid itself of tumour [10]
having therapy to help shrink tumour [10]
—————————————————————— 5/2011 – prescribed 6 weeks radiotherapy coupled with Temozolomide chemotherapy [10]
potential life saving treatment in America [2]
travel to US for treatment hopes will save her life [10]
—————————————————————— 6/2011
1) completed radiotherapy course
2) had to stop chemo after few days because allergic reaction
3) doctors very honest – couldn’t continue TMZ cycles because was allergic to it
4) original oncologist against decision to go to America for treatment because controversial and not yet approved by NICE, or any medical body
5) transferred to another oncologist willing to take me on in London
made fully aware early on that cancer treatment and long term prognosis has improved for most common types of cancers over the years [23]
has been no real improvement in outcomes for Brain Tumours – especially Glioma which although being one of most common cancers, especially in children, are most under funded types of cancer in research arena [23]
spoke to past patients in US and UK, some who were cured many years ago from ‘terminal’ brain cancers using “antineoplastons” at Burzynski Clinic in Houston, Texas [23]
clinic treats many types of cancer with other therapies but for antineoplastons primarily focus on brain cancer because it is one of hardest to treat [23]
Prior to visit to US sent sample of Laura’s brain tumour tissue from biopsy procedure to Pheonix, Arizona [23]
At lab number of tests carried out including gene expression tests, genetic tests used to identify which treatments would be most effective for Laura as an individual – backup plan if antineoplastons had no effect [23]
“FDA approved” Phase II clinical trial – specifically “Antineoplaston A10 & AS2-1” which are treatments pioneered by Dr Burzynski in mid 1970’s [23]
—————————————————————— 7/1/2011
friday finished 6 week radiotherapy course [18]
treatment supposed to be given alongside chemotherapy but 10 days into 33 day course of chemotherapy developed allergic reaction and had to stop particular drug [18]
chemotherapy isnt very effective for everyone with Brain cancer and missing out on this drug also means Laura is so much stronger physically than she would have been otherwise, that coupled with great advice from our nutritionalist Jo Gamble has meant Laura is in amazing shape and able to travel to America safely to start treatment [18]
—————————————————————— 7/2011 – travelled to Burzynski Clinic in Houston end of July to start Antineoplaston treatment and for Ben to be trained on administering medicine by doctors at Clinic
—————————————————————— 7/2011
since starting treatment in America in July, has begun to show signs of improvement [37]
started to get use of paralysed right arm and hand back [37]
has got a lot more energy and is able to go on short walks with Jacob [37]
receive gene therapy at clinic in Texas [37]
treatment involves having daily doses of drugs and scans every 6 weeks [37]
—————————————————————— 7/2011 – 8/2011 – 3 weeks there and came home and continuing treatment
(administered by Ben with very close direction from clinic)
—————————————————————— 7/25/2011 – MRI scan Monday
—————————————————————— 7/28/2011
had agonising wait for results on Thursday
got results “Increase in size of tumour left frontal lobe” and sent straight off to clinic, took few hours to get green light (because of time difference) and by 6:30pm got call we were waiting for from clinic FDA should give special exception without aproblem – Houston here we come [21]
—————————————————————— 7/29/2011 – [21]
Ben bought Friday.morning flights “just incase” [21]
arrived in Houston, Texas Friday.afternoon after trouble free flight [21]
—————————————————————— 7/29/2011 – 8/2011 – [21]
here for next 3 weeks [21]
Thanks to amazing fund raising and generosity from everyone raised enough money to start treatment now rather than 10/2011, this gives a huge head start [21]
would originally been having another cycle of chemo until 10/2011 but allergic to it so means NHS don’t have any more options available at this stage [21]
Chemo isn’t very effective for a lot of brain tumours so isn’t big loss, much better to get onto next step earlier than planned [21]
FDA law prevents clinic treating at this point unless tumour has grown since last scan [21]
(if it had shrunk from radiotherapy would’ve had to wait until end of August) [21]
in catch 22 situation, didn’t want tumour to have grown since April but also wanted to get America ASAP, UK doctors did say not to panic because even if there was growth it could just be post radiotherapy swelling, this put our minds slightly at rest [21]
decided to take additional option on top of standard treatment has come here for, option has only been available here a few months and – huge advancement in world of cancer treatment [21]
sample of tumour tissue sent over from Kings Hospital to Lab in Phoenix, Arizona [21]
Lab running number of different tests on tissue sample and also mapping DNA profile to get “molecular fingerprint” of individual tumour [21]
Everyone’s cancer is unique to them and therefore will respond best to “unique treatment plan” [21]
Lab results will be sent to clinic next week and will tell them exactly what drugs will be effective for unique cancer, and what specific genes are involved in causing cancer [21]
Gene target therapies will also be used to “switch off” genes causing cancer and “turn on” tumour suppressor genes to help stop cancer in its tracks [21]
rather than having “one size fits all” treatment be recommended treatments based on what clinic knows will be effective for individual case [21]
—————————————————————— 8/2/2011 – 1st appointment Tuesday where will finally meet Dr Burzynski in person [21]
—————————————————————— 8/2011
appointment booked at clinic in America for start of August so will be flying out at end of month to start treatment [18]
travel to clinic and began treatment [43]
—————————————————————— 8/3/2011 – [21]
11:30AM CONSULTATION AT CLINIC [21]
journey began 8 months ago (12/24/2010) when diagnosed, found out over following weeks how generally un-successful brain tumour treatment was in UK [21]
day consisted of consultation with Dr Acelar who will be primary consultant [21]
She interviewed in more detail about condition then went off and reviewed MRI scan images with Dr Burzynski as he would have final say over treatment plan to be prescribed [21]
After agonising wait for what seemed like 10 hours but was only 10 minutes Dr Acelar came back into room with Dr Burzynski [21]
this is a guy we’ve been researching about 6 months, has been completely curing what were previously considered to be 100% fatal brain tumours, and by curing I mean for a lot of patients tumours completely disappear [21]
wasted no time explaining exactly how treatment works, basically brain cancer is being caused by up to 600 defective genes, treatment will “switch off” cancer causing genes which will make cancer cells go into “apoptosis” [21]
Apoptosis is natural cycle where cell dies and is broken down by body, in other words tumour will start to break down and dissolve away [21]
know within 4-8 weeks if working and if not then they can add in other gene targeted therapies – based on results of some genetic testing having done at the moment [21]
had bloods and physical examination done [21]
(by another doctor) [21]
and done for the day [21]
due back at clinic once they get approval from FDA to treat – which will take 1-4 days [21]
—————————————————————— 8/4/2011 – [22]
just got call from clinic and now approved for treatment by FDA much quicker than thought [22]
didn’t think there would be any problems because fits criteria, having had previous Radiotherapy which is required before you can have any private treatment from Dr Burzynski [22]
waiting on appointment from doctor who’ll be fitting Hickman Line, which is IV line fitted in chest just below collar bone [22]
Having IV line fitted is more convenient that in arm long term, and allows delivery of higher doses of medicine from IV pump that will become friend for about next 12 months (year) [22]
should be getting fitted in morning (Friday), enabling 1st test dose of Antineoplastons in afternoon [22]
—————————————————————— 8/8/2011 – Burzynski Clinic Houston Texas [55]
11.am connected and switched on pump for 1st ever Antineoplaston infusion, from that moment on would have to have 90 minute infusion every 4 hours – EVERY DAY .24/7 [55]
grade four cancer diagnosis let alone NHS treatment options, alternative medical research and decisions, fundraising, flying to america for a month [55]
—————————————————————— 8/8/2011 – 9/2011 – doctors completely honest, said won’t know IF or how quickly will respond until on treatment for at least 8 weeks
—————————————————————— 8/8/2011 – on antineoplaston therapy since
medicine rich in sodium and have to infuse 2 litres daily
(dose lasts 90 minutes every 4 hours 24/7)
drink approx 5 litres of water daily
while pump running
carrying around infusion pump all day connected to Hickman line in chest
medicine pump
MRI scan at private hospital every 6 weeks
8/2011 – came home
—————————————————————— 08/12/2011
25-year-old Laura Hymas, of High Street, Rochester, has seen tumour shrink by more than a third in just 6 weeks after pioneering therapy in America [37]
already improving since treatment in USA [37]
—————————————————————— 9/2011 – came home and continued antineoplaston treatment, treatment literally takes over and consumes every day of your life [55]
Not specifically side effects because been lucky enough to have minimal short term side effects, but impact on daily life – the infusions, preparing medicine bags, blood tests, etc.. [55]
—————————————————————— 10/2011
hopes to have new treatment in US [4]
took until middle of October to slowly increase antineoplaston dose up to “maintenance dose” Dr Burzynski deems most effective for body weight
hard to see Laura suffer [4]
know in next few weeks going to lose hair [4]
Some people say should accept condition is terminal [4]
—————————————————————— 11/29/2011 -_6 weeks later scan tumour started shrinking by 36% [59]
—————————————————————— 11/2011 – 36% (Nov 2011) [48]
decreased in size EVERY 6 weekly scan [48]
bulk of tumour reduced in size by 77% since reaching maximum tolerated dose of Antineoplastons [52]
(growth stabilised before hitting this dose) [52]
—————————————————————— 1/2012 – 56% (Jan 2012) [48]
decreased in size EVERY 6 weekly scan [48]
—————————————————————— 1/10/2012 – [40]
scan every 6 weeks to find out how treatment is going [40]
such good result last time where tumour shrank so much [40]
there’s amazing doctor in Houston, Texas [40]
friendly, happy and kind man who is always polite and making jokes [40]
sees so many patients but makes real effort to know you as a person, who you are, where you come from, what your story is..how you got to his front door [40]
doesnt promise you anything, cannot help everyone [40]
(1st to admit that) [40]
costs are completely transparent from day one, you even get breakdown of why treatment costs what it does [40]
has many many patients who had inoperable malignant brain cancers that failed chemo and radiotherapy who are not only still alive 20 years later… are now cancer free [40]
Some patients have never had any other treatment for their brain cancer apart from Antineoplaston therapy [40]
(which is what on) [40]
family who live in Kent just 5 miles from us got in touch just before Christmas as they read about us in the local paper [40]
son had been diagnosed with brain tumour [40]
They knew radiotherapy and chemo would only be palliative and having these therapies alone at young age would shorten life let alone brain tumour problem [40]
searched and searched … Eventually like us found Dr Burzynski too [40]
sons tumour decreased in size 72.5% from 1 year just on antineoplaston treatment, then put on low dose of medicine for further 3 years [40]
tumour is still there but hasn’t grown or changed since [40]
NHS oncologist can’t understand how he’a still here [40]
was 8 years old when diagnosed, in 1998 [40]
now 21 [40]
happy healthy young man and just passed university degree, looking forward to future [40]
a lot of criticism about Dr Burzynski, people saying Antineoplastons “unproven” and Dr Burzynski is scam artist taking money from dying cancer patients, that terminally ill cancer patients should be discouraged from “False Hope” he gives people [40]
any celebrities that try to help fund raise or appeal for people to donate are bombarded on twitter and internet with messages saying they are helping someone see scam artist and quack [40]
We have been focus of some of these groups, they have been trying to discourage people from donating to us “With Laura’s best interests at heart” [40]
already tried and exhausted currently available “conventional” medicine [40]
countless websites discussing Laura, other current patients with fund raising campagins and Dr Burzynski that contain false information about us all [40]
isn’t new thing to Dr Burzynski, he’s used to it by now but for us it’s distressing [40]
They try to find holes in Laura’s scan results when she reports good news, one person even told Laura on twitter to “F*** off” then he called her a “Burzynski Troll” and justified actions by saying Laura fake patient designed to encourage more people to give money to “Burzynski scam” [40]
REAL Stories about REAL people like the one above from family who live near us are ones that give us strength to carry on [40]
one day critics might decide there’s enough evidence to show treatment works? [40]
Just because they haven’t seen scientific data doesn’t mean something doesn’t work [40]
It’s worked for many [40]
having great response [40]
Tuesday when had scan at private hospital were walking past office afterwards where radiologist would be examining new scan and comparing it to last one taken 11/29/2011 [40]
stood outside to catch attention of secretary so could arrange next scan, at that point I saw through crack in door someone had brain scans on computer screen [40]
radiologist rolled back in his chair and popped his head round the door, our hearts were pumping as we were told we could have the result straight away [40]
radiologist had huge smile on his face [40]
Its looking good, definitely smaller [40]
walked in office, and had new scans from that day on screen with Laura’s scans from 11/29/2011 below [40]
To naked eye obvious to see tumour MUCH smaller and enhancing much less [40]
(less cancerous) [40]
pointed out some things and said haven’t finished measuring but estimate AT LEAST 25% SMALLER than last scan 6 weeks ago 11/2011 [40]
said if hang around in hospital cafe for 15 minutes he’ll finish up report and can have copy [40]
had some lunch and nurse came in short while later with report [40]
better than even initially thought [40]
TUMOUR DECREASED 56% in size since beginning American treatment 8/2011 [40]
most recent scan revealed tumour decreased massive 56% in size since beginning of treatment [43]
scan – 56% tumour decrease! [59]
latest scan shows tumour at least 25% smaller than last scan 11/2011 [43]
decreased 56% in size since beginning American treatment 8/2011 [43]
sent scan CD off straight away by Fedex to America so doctors could do independent report too [40]
—————————————————————— 1/11/2012 – [40]
Yesterday night spoke to doctor at Burzynski Clinic, they’ve reviewed scans and concluded in their opinion tumour has decreased same amount [40]
need to keep on medicine into 2013 [40]
If one day lucky enough for cancer to completely disappear still need to keep on medicine up to 12 months (1 year) after, “maintenance program” designed to make sure kill every single cancerous cell because Glioblastoma Multiforme are very nasty and has “roots” that even an MRI wouldn’t necessarily pick up [40]
If stopped treatment too quickly cancer could return [40]
—————————————————————— 1/13/2012 – [43]
Dr. Burzynski and clinic have been under constant heavy criticism from people believing he’s a ‘quack’ that gives ‘false hope’ to terminally ill people [43]
a lot of criticism out there about Dr Burzynski, people saying Antineoplastons “unproven” and Dr Burzynski a scam artist taking money from dying cancer patients and terminally ill cancer patients should be discouraged from “False Hope” he gives people [43]
already tried and exhausted currently available “conventional” medicine.” [43]
diagnosed with tumour just over year ago [43]
Doctors tell us current available medicines can only slow it down – there are never any survivors 12 – 14 months (1 year – 1 year 2 months) from diagnosis is prognosis [43]
keep on medicine into 2013 [43]
—————————————————————— 2/2/2012 – [44]
treatment is working so well [44]
every 6 weeks for MRI scan [44]
—————————————————————— 2/9/2012 – [47]
really huge milestone [47]
Day to day been continuing with medicine [47]
attached to IV pump using hickman line in chest and has dose every 4 hours 24/7 [47]
Each dose lasts 90 minutes so really interrupts sleep patterns and makes tired – effectively infuses 2 litres of medicine directly into blood stream every day involves a lot of trips to toilet [47]
medicine high in sodium so on top of this drinks 5 litres of water a day [47]
aren’t any side effects other than toilet trips, extreme thirst while infusing and tiredness [47]
Next MRI scan in few weeks so nerves and worries setting in [47]
—————————————————————— 2/21/2012 – had 6 weekly MRI scan tuesday [48]
77% (Feb 2012) 77% in just 18 WEEKS [48]
decreased in size EVERY 6 weekly scan [48]
scan was even better news – 77% tumour decrease! [59]
just got results and tumour has continued shrinking [48]
now 77% smaller than when started treatment 8/2011 [48]
amazing news, was stable few months while increasing Antineoplaston dose, then hit maintenance dose 10/17/2011 [48]
decreased in size EVERY 6 weekly scan [48]
Glioblastoma Mutliforme is most agressive cancer out there so Laura will need to keep going on treatment for at least another year to kill every single cancer cell [48]
been fighting this cancer for over year now, almost approaching April [49]
This time last year told awful news that brain tumour had changed and was now much more aggressive, had turned very cancerous and future was very uncertain because it was one of worse cancers anyone could get, on top of that it was in worst location too [49]
—————————————————————— 4/5/2012 – [50]
6 weekly MRI scan went well again [50]
tumour now reduced to what doctors believe is small cavity there because biopsy 4/2011 [50]
small edge of cavity is still enhancing on scan [50]
(which means cancerous cells) [50]
enhancing less than last scan, so everything moving in right direction [50]
plan for now is to just keep going and continue daily doses of antineoplaston medication [50]
treatment working so well [50]
—————————————————————— 5/15/2012 – scan Tuesday shows what remains of tumour is now at stage where hardly enhancing at all on MRI scan, enhancement now barely visible without magnifying scan images heavily [52]
“active” (growing/spreading) malignant tumour shows up on MRI scan as bright white area [52]
bright area represents cancerous cells and tumour used to light up like light bulb which was bad news [52]
aim of any successful treatment is to get rid of everything that enhances so no longer have active tumour [52]
bulk of tumour reduced in size by 77% since reaching maximum tolerated dose of Antineoplastons (11/2011) [52]
(growth stabilised before hitting this dose) [52]
reduction in tumour size meant able to stop taking steroids [52]
(designed to reduce brain swelling but have nasty side effects) [52]
epilepsy has got much better, especially in last month [52]
seizures much less frequent [52]
What’s left of tumour – is cystic fluid filled cavity* [52]
*cavity there from surgery (Biopsy) 4/2011 [52]
cavity may never dissapear, might just stay there because brain tissue has been removed [52]
Alternatively cavity may break down very slowly and hopefully dissapear over time [52]
Either way isn’t major problem [52]
—————————————————————— 5/18/2012 – [52]
had chat with doctor over phone last night, as last scan showed very very little enhancement they have now decided to put on “finishing program” of antineoplastons [52]
If patient lucky enough to have tumour stop enhancing then they’re asked to carry on treatment for 8 months, then finish [52]
8 month schedule allows medicine to have time to kill last cancerous cells that aren’t showing up on MRI scan [52]
told once people finish schedule – in most cases – unlikely tumour will return, most people can go on to live normal tumour free life [52]
diganosed 17 months ago (1 year 5 months) [52]
“In the field of Brain Tumours there are no ‘proven’ treatments, only treatments ‘accepted’ by a group of clinicians who practise in that field” [52]
treatment isn’t guaranteed to work for everyone, but there are many long term (10, 20yr) survivors [52]
Using traditional chemo and radiation on inoperable GBM has no long term survivors [52]
—————————————————————— 6/15/2012 – [53]
suspected Hickman Line infection, really exhausted and had cold shivers [53]
Burzynski Clinic very on the ball and didn’t want to take any chances, said had to take off antineoplaston treatment and go straight to hospital so doctor could take blood cultures from hickman line and arm, local doctor arranged for us at very short notice [53]
told by clinic that if infection in line it would have to be taken out and would have to have probably 7-10 day course of antibiotics…then there would be headache of how to get another hickman line surgically fitted because only GP supporting in england [53]
havent seen or had any contact with NHS oncologist since ealier this year, despite good progress so they probably wouldn’t be able or willing to help in this situation [53]
Worst case looking at about 3 weeks without treatment – huge worry because hasn’t missed single day of treatment since 8/2011 [53]
—————————————————————— 6/21/2012 – blood cultures were taken and results were clear, no infection present [53]
started back on antineoplaston treatment again and could forget all problems and what if’s [53]
While off treatment had good chance to rest and relax, something long overdue [53]
hadn’t had full nights sleep for nearly 11 months [53]
medicine is very high in sodium so wake up during doses about 5 times a night for toilet trips and drinks [53]
totally burnt out last week so suspect cold shivers and exhaustion were just where needed a break and also past year catching up emotionally [53]
been rollercoaster, on autopilot so don’t think taken 5 minutes to stop and think about whats happened to family, extreme stress of situation, fundraising and worries about raising enough money, trip to america, treatment and all the controversy it attracts [53]
—————————————————————— 7/4/2012 – [54]
had MRI scan last week and despite being off treatment for 6 days prior to scan [54]
(due to suspected IV line infection) [54]
NO CHANGES [54]
back on antineoplaston treatment again and still scheduled to finish treatment at end of year [54]
really lucky to catch tumour early [54]
last year only initially had 3 options which were surgery, radiation and chemo [54]
did enormous amount of research and even got MP involved with discussions with head of PCT, they confirmed all standard approaches were palliative, designed to buy time – not something we were told by oncologists, who refer to these 3 modalities as “a radical treatment approach” and give little information apart from “we’ll see what happens” [54]
they are same options that’ve been used for decades – where is the progress? [54]
Being an inoperable tumour our only options left were radiation and chemo [54]
Knowing that best radiation can do is slow down growth [54]
(in some cases) [54]
If it worked that would only be small window of time [54]
was unable to take more than few days of chemo due to allergic reaction [54]
(which in fact, looking back was actually a normal body reaction to taking a highly toxic substance) [54]
Would American treatment work or would Dr Burzynski be a crook just like all the sceptics were saying? [54]
—————————————————————— 8/2012 – no trace of Tumor at all [59]
always get 2nd opinion from UK radiologist who confirms just cavity left which should resolve over time [59]
last update just after MRI scan, at which time both Dr Burzynski’s radiologist and private UK radiologist both confirmed there was no trace of residual or recurrent brain tumour on MRI scans [56]
—————————————————————— 8/29/2012 – [55]
Scan: one year on treatment! on Wednesday [55]
Burzynski Clinic advised all they can see on MRI scans is scar tissue, cavity present from where tumour used to be [55]
UK radiologist was more cautious initially [55]
(probably because he has never seen a Glioblastoma dissapear before!?) [55]
he reported on scan and came to same conclusion as Burzynski Clinic [55]
reported today he beleives all he can see is small cavity/scar tissue too [55]
fact that 2 parties don’t have any contact gives us great confidence in the 2 mirroring reports [55]
—————————————————————— 9/2012 – had scan [56]
—————————————————————— 11/1/2012 – Laura Hymas’s MRI assessment from Dr. Burzynski 11-01-2012
So this is uh a girl who came to see you uh this year, last year
Yes
I think this is after approximately uh 4 months of treatment
4, maybe 5 months
So she’s, been on treatment 4 months, and this is when she came to see you here
This was in Ju
I’m sorry, this was in July so this must be 6 months
6 months (both)
Yeah 6 months, yes
So this was July, and this was the next one that she had
That’s right
This is November, and uh, here is now, January
That’s a substantial difference, certainly
And this is with no chemotherapy
No chemotherapy
Just the uh
Just antineoplastons only
Yes
And, and what type of tumor did she have
Only, oh one, this is glioblastoma
This is the highest malignancy tumor
Yes
So you must be pretty happy with this
Well, she did very well
I’m very glad
Yeah
Sure
So maybe next one
Especially, since it was not necessary to use any other treatment
And actually, the response was somewhat slow and we thought that perhaps it would be necessary to add additional treatment, but since she got such a nice decrease we hope we can avoid any further treatment
Yeah
But this looks great because in addition to decrease in the tumor, we see also shrinkage of uh the cavity after, the operation
You mean the cavity around
That’s right
That’s right
The cavity here
Okay
So, this also, this is also the case which means that there is certain degree of repair, from the damage that was done by the procedure
Yes
That’s correct
She had a biopsy, didn’t she
That’s right
That’s tight
Yes
Yeah
So lets hope that perhaps another 2 months or 4 months it will disappear completely
—————————————————————— 11/27/2012 – scan this morning, confirm again nothing present, which is amazing news we all couldnt be happier [56]
—————————————————————— 12/25/2012 – scheduled to finish treatment just after Christmas [52]
—————————————————————— 1/2013 – It’s GONE
continuing antineoplaston treatment until end of treatment course in 1/2013 and will then have regular MRI scans to ensure tumour doesn’t re-occur
just taking time to relax and see out end of Antineoplaston treatment, which all being well will finish 1/2013 after next scheduled MRI scan [56]
finish treatment [59]
======================================
====================================== THOSE WHO MADE IT POSSIBLE:
======================================
======================================
5/12/2011 – Fundraising Launch! Thursday
such an amazing response and so many emails
Thank you so much to everyone, friends, family, friends of friends and even the people who have donated and dont even know us, we are really touched by your kindness
——————————————————————
7/8/2011 – family and freinds – parents, especially Laura’s mum and dad [18]
======================================
====================================== THE PEOPLE:
======================================
======================================
Alice – heard about us because her brother plays football with Laura’s nephew Joe [49]
——————————————————————
6/26/2011 – Bergin, James – London Bikeathon East London Thames Barrier through city 26 miles to South West London (Richmond Park) back to Thames Barrier 52 miles in 7 hours!
——————————————————————
Catlin (Alice friend Catlin) [49]
——————————————————————
8/3/2011 – Dan – Anglo-Texan friends [21]
——————————————————————
Danielle (Their friends) – run Cricketers Pub in Gillingham had disco for Laura last Friday; raising £425
——————————————————————
Elaine (Laura’s sister) [49]
——————————————————————
Figg, Keri – live locally and heard about Laura recently through a friend: Since then have been relentlessly selling wristbands, arranging fundraisers, and running all over Kent trying to get raffle prizes!
——————————————————————
Hills, Kirsten – Journalist from BBC
18:00! re-run at 22:30 [7]
——————————————————————
5/19/2011 – Hound, Rufus sent Twitter video to his 236,293 followers Thursday [8]
7/8/2011 – received almost £20,000 in 12 hours then more donations over following weeks as people continued to spread the word about the video [18]
7/8/2011 – Broken the £50,000 Barrier! – Update on Laura Friday: only started fund raising around 6 weeks ago! [18]
——————————————————————
6/26/2011 – Ben and 2 friends – London Bikeathon East London Thames Barrier through city 26 miles to South West London (Richmond Park) back to Thames Barrier 52 miles in 7 hours!
——————————————————————
5/31/2011 – Hymas, Eve (Evie) (Bens sister) – 12hr golf marathon Tuesday 7am [11]
5/31/2011 – friends at their schools who have donated to the fund [11]
5/31/2011 – Hymas, Theo (Brother) – [11]
——————————————————————
7/8/2011 – Les (Laura’s father in law) and his good friend [17]
——————————————————————
5/31/2011 – Jackson, Jemma – 12hr golf marathon Tuesday 7am [11]
——————————————————————
7/8/2011 – Jeffries, Terry …Local artist who gave a print of a beautiful painting of Venice, DeBeers diamond company donated a gold and diamond pen along with a box of 5 tickets to the Proms at the Royal Albert Hall! [17]
——————————————————————
Joe (Laura’s nephew) up north [49]
——————————————————————
Jones, Sandra – live locally and heard about Laura recently through a friend: Since then have been relentlessly selling wristbands, arranging fundraisers, and running all over Kent trying to get raffle prizes!
——————————————————————
7/10/2011 – Local Man Donates £5,000 ! Sunday [19]
Lee – local man donated £5,000 after reading her story on leaflet in shop near Jacobs nursery [19]
Ben and Laura’s dad Fred arranged to meet Lee in a coffee shop in Rochester yesterday [19]
——————————————————————
4/19/2012 – Les (Laura’s friend) [51]
——————————————————————
8/3/2011 – Louise – Anglo-Texan friends [21]
——————————————————————
6/26/2011 – Marks, Richard – London Bikeathon East London Thames Barrier through city 26 miles to South West London (Richmond Park) back to Thames Barrier 52 miles in 7 hours!
——————————————————————
7/8/2011 – Meaking, Len (Les’ good friend) [17]
7/8/2011 – Auction and raffle [17]
——————————————————————
6/17/2011 – Morden, Emily – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday [12]
——————————————————————
McKenzie, Leon (ex Crystal Palace) [7]
——————————————————————
time to meet Russ – English guy who lives in Texas who heard about us on twitter – he’s offered to let us have a car for free while we’re here saving about £1000 [21]
——————————————————————
Snowdon, Lisa [7]
——————————————————————
Stanley Family [7]
auction off their dad’s signed Manchester City football shirt
——————————————————————
STANLEY, KAYLIE (Kayley) [7]
one of Laura’s oldest school friends, sadly lost her father to Brain Cancer when they were growing up [7]
sell her wedding dress and donate proceeds to the fund
——————————————————————
Steve (Their friends) – run Cricketers Pub in Gillingham had disco for Laura last Friday; raising £425
——————————————————————
6/17/2011 – Stevenson, Robyn – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday [12]
——————————————————————
6/17/2011 – Stevenson, Sam – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday [12]
——————————————————————
6/27/2011 – Taylor, Jessica L E – founder of “Share a Star” charity, Kent [15] http://www.shareastar.org.uk
——————————————————————
6/19/2011 – Willis, Brett – on Sunday completed 60 mile London to Brighton bike ride aim to complete ride in under 5 hours and managed it in 4hrs 51 minutes! [13]
6/19/2011 – raising £619 [13]
6/19/2011 – everyone who sponsored Brett and played a part in helping us raise money for the treatment fund [13]
——————————————————————
5/31/2011 – generously hosted by Roy, Sarah and Woodage, Charlie [11]
5/31/2011 – Woodage, Charlie – 12hr golf marathon Tuesday 7am [11]
——————————————————————
08/12/2011 – funded by £75,000 raised by family, friends and strangers [37]
10/2011 – if does save her life, we can carry on raising money for others in a similar situation [4]
======================================
====================================== BUSINESSES:
======================================
======================================
4/19/2012 – Night Out event Friday that Laura’s friend Les has been busy arranging [51]
——————————————————————
4/27/2012 – Fundraising event is Sponsored Assult Course for kids Friday [49]
All children will be involved and Lofty The Lion, Bolton Wanderers mascot
children are being educated about Laura and her condition, as school feel is very important that children realise these events can occur in people’s lives
Elaine said there will be Barbeque, ice creams etc [49]
——————————————————————
6/27/2011 – London 52 Mile Bikeathon Completed! Monday
——————————————————————
5/31/2011 – public par 65 Bramford Golf Center [11]
5/31/2011 – Tuesday at 7am, 12hr golf marathon (golfathon)
5/31/2011 – 124 holes and almost £500 in sponsorship [11]
——————————————————————
6/12/2011 – Golf Marathon! Sunday
——————————————————————
6/17/2011 – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday girls are friends of Laura and all wore grey to represent their support of “Wear Grey For Laura Day” as grey represents the colour for Brain Cancer support [12]
6/17/2011 – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday They all baked and brought cakes in and sold them to customers in exchange for a small donation [12]
6/17/2011 – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday The branch was dressed up in silver balloons and banners to help raise awareness and set the scene! [12]
6/17/2011 – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday raising £573.08 !! [12]
——————————————————————
6/20/2011 – Barclays Branch Fund Raiser Monday [12]
——————————————————————
Cricketers Pub in Gillingham had disco for Laura last Friday; raising £425 – Steve and Danielle (their friends) run
——————————————————————
08/12/2011 – enjoyed family trip to Dickensian Christmas Festival in Rochester at the weekend [37]
——————————————————————
7/8/2011 – Golf Tournament Raises £4,040! Friday
Len had charity BBQ at his house last weekend and raised £500 bringing total raised to £4,040 ! [17]
7/8/2011 – arranged golf tournament wednesday Hintlesham Hallf Golf Club in Suffolk, followed by hog roast, raffle some generous auction items, some nice cake [17]
——————————————————————
7/8/2011 – anonymous golfer donated holiday to La Manga with flights, accomodation and 2 rounds of golf included! [17]
——————————————————————
7/4/2011 – Prima Montessori Family Fun Day! Monday [16]
7/3/2011 – Jacobs nursery held fun day on sunday to help raise money for Laura’s fund! [16]
7/3/2011 – nursery staff got together and produced amazing day BBQ, cakes, Tombola, Raffle prizes, Painting and messy play, a Magician/entertainer for the kids, bouncy castle and loads more …including throwing wet sponges
(and later full water buckets!)
at the staff for a few quid!
Mums and Dads even benefited – they got their car washed
(for a small fee) [16]
The family run nursery have been a great support to us and are arranging more events over the next month, we cant thank them enough for their support and the amazing job they’re doing looking after Jacob – he loves his days at the nursery! [16]
6/26/2011 – raise amazing £7,650 in total sponsorship for this event from colleagues at RWE Trading where Ben and James work and RBS where Richard works!
——————————————————————
6/27/2011 – “Share a Star” Supports Monday [15] http://www.shareastar.org.uk
——————————————————————
4/5/2012 – relaxing spa break courtesy of The Willow Foundation [50] http://www.willowfoundation.org.uk
======================================
====================================== NEWS MEDIA:
======================================
======================================
3/25/2012 – in local paper last week article celebrating recent scan showed 77% tumour reduction [49]
——————————————————————
5/15/2011 – BBC SOUTH EAST NEWS [7]
——————————————————————
2011 – BELLA magazine
——————————————————————
5/27/2011 – Daily Mirror Covers My Story Friday [9]
IPC magazines journalist [7]
——————————————————————
‘Pick Me Up’ magazine – has circulation of 400,000 copies sold every week [7]
£500 to Lauras Hope fund for her story! [7]
——————————————————————
5/27/2011 – NewsUK News,Real life: I’ll do anything I can to stay alive for my baby 12:01 AM By Mirror.co.uk [10]
——————————————————————
Sky channel 983 – family and friends not in Kent/Sussex & Surrey area [7]
======================================
====================================== REFERENCES:
======================================
====================================== [1] – 12/24/2009 – Laura’s Tumour
—————————————————————— http://www.hopeforlaurafund.co.uk/lauras-tumour
====================================== [2] – 5/8/2011 – Our Original Appeal – 8th May 2011: Welcome to the Hope for Laura Fund
—————————————————————— http://www.hopeforlaurafund.co.uk
====================================== [3] – Hope for Laura Fund blog
—————————————————————— http://www.hopeforlaurafund.co.uk/blog
====================================== [4]
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/frontpage/4
====================================== [5] – 5/12/2011 – Fundraising Launch! on Thursday, 12 May 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/our-second-blog-post
====================================== [6]
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/frontpage/3
====================================== [7] – 5/14/2011 – Press Coverage! on Saturday, 14 May 2011. BBC SOUTH EAST NEWS & PICK ME UP MAGAZINE
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/press-coverage
====================================== [8] – 5/19/2011 – Twitter Has Gone Mad!! on Thursday, 19 May 2011. RUFUS HOUND GOES THE EXTRA MILE FOR LAURA
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/twitter-has-gone-mad
====================================== [9] – 5/27/2011 – Daily Mirror Covers My Story on Friday, 27 May 2011. COVERAGE AVAILABLE ONLINE AND IN TODAYS HARDCOPY PAPER
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/daily-mirror
====================================== [10] – 5/27/2011 – NewsUK News, Real life: I’ll do anything I can to stay alive for my baby 27 May 2011 12:01 AM By
Mirror.co.uk
—————————————————————— http://www.mirror.co.uk/news/uk-news/real-life-ill-do-anything-i-can-130745
====================================== [11] – 5/31/2011 (6/12/2011) – Golf Marathon! on Sunday, 12 June 2011. On Tuesday 31st May at 7am, Charlie Woodage, Jemma Jackson and Bens sister Eve Hymas teed off for a 12hr golf marathon in aid of the ‘hope for laura fund’
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/golf-marathon
====================================== [12] – 6/20/2011 – Barclays Branch Fund Raiser on Monday, 20 June 2011. Barclays staff members Emily Morden, Robyn Stevenson & Sam Stevenson arranged for the branch in Rayleigh, Essex to have a fund raising day for Laura on Friday 17th June
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/barclays-branch-fund-raiser
====================================== [13] – 6/20/2011 – London to Brighton Ride on Monday, 20 June 2011. A huge thank you from us to Brett Willis who on Sunday completed the 60 mile London to Brighton bike ride in aid of Laura
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/london-to-brighton-ride
====================================== [14] – 6/27/2011 – London 52 Mile Bikeathon Completed! on Monday, 27 June 2011. Laura’s fiancee Ben and two friends (James Bergin and Richard Marks) completed the London Bikeathon yesterday to raise money for Laura’s fund!
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/london-52-mile-bikeathon-completed
====================================== [15] – 6/27/2011 – “Share a Star” Supports Laura on Monday, 27 June 2011. Jessica L E Taylor, the founder of the “Share a Star” charity gave Laura a personalised gift of a Star to hold with her when visiting the hospital having treatment and to take to America with us when we visit the clinic
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/share-a-star-supports-laura
====================================== [16] – 7/4/2011 – Prima Montessori Family Fun Day! on Monday, 04 July 2011. Jacobs nursery held a fun day on sunday to help raise money for Laura’s fund!
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/prima-montessori-family-fun-day
====================================== [17] – 7/8/2011 – Golf Tournament Raises £4,040! on Friday, 08 July 2011. Laura’s father in law Les and his good friend Len Meaking arranged a golf tournament on wednesday to raise money for Laura
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/golf-tournament-raises-4040
====================================== [18] – 7/8/2011 – Broken the £50,000 Barrier! – Update on Laura on Friday, 08 July 2011. Following on from the golf tournament we have now broken the £50,000 barrier!
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/broken-the-50000-barrier-update-on-laura
====================================== [19] – 7/10/2011 – Local Man Donates £5,000 ! on Sunday, 10 July 2011. Lee, a local man has donated £5,000 to Laura’s fund after reading about her story on a leaflet in a shop near Jacobs nursery
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/local-man-donates-5000
====================================== [20] – 7/30/2011 – Welcome to Houston! on Saturday, 30 July 2011. NOW THAT’S A SIGN WE DIDN’T THINK WE WOULD SEE UNTIL AT LEAST OCTOBER!
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/welcome-to-houston
====================================== [21] – 8/3/2011 – Consultation Day on Wednesday, 03 August 2011. WE HAD A MIXTURE OF FEELINGS THIS MORNING. TODAY AT 11:30AM WAS CONSULTATION DAY AT THE CLINIC…
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/consultation-day
====================================== [22] – 8/4/2011 – FDA Approval! on Thursday, 04 August 2011. We just got a call from the clinic and Laura has now been approved for treatment by the FDA much quicker than we thought!
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/fda-approval
====================================== [23] – LAURA’S TREATMENT IN AMERICA
—————————————————————— http://www.hopeforlaurafund.co.uk/us-treatment
====================================== [24]
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/frontpage/2
====================================== [25] – 8/6/2011 – IV fitted all set for Monday on Saturday, 06 August 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/iv-fitted-all-set-for-monday
====================================== [26] – 8/8/2011 – Kent is near Wales?? on Monday, 08 August 2011. ….i’ll explain the title in a minute :o) Today was first day of antineoplaston medicine at the Burzynski Clinic!
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/kent-is-near-wales
====================================== [27] – 8/18/2011 – Treatment Progress Update on Thursday, 18 August 2011. Has it really been 10 days since i’ve written the last Blog update?!
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/treatment-progress-update
====================================== [28] – 8/24/2011 – Our american journey comes to an end.. on Wednesday, 24 August 2011. After what seems like months, but is only three weeks we have come to the end of this part of our journey.
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/our-american-journey-comes-to-an-end
====================================== [29] – 9/7/2011 – Update since we got back home on Wednesday, 07 September 2011. Sorry for the Radio silence over the past few weeks!
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/update-since-we-got-home
====================================== [30] – 9/9/2011 – Stable Tumour! on Friday, 09 September 2011. Laura had an MRI scan on monday and we got a call from the clinic last night to go over the results
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/stable-tumour
====================================== [31] – 9/15/2011 – Music Festival – Chatham, Kent! on Thursday, 15 September 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/music-festival-chatham-kent
====================================== [32] – 10/3/2011 – Remembering brave friends on Monday, 03 October 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/remembering-brave-friends
====================================== [33] – 10/21/2011 – MRI results day on Friday, 21 October 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/mri-results-day
====================================== [34] – 11/21/2011 – Update for November 2011 on Monday, 21 November 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/update-for-november-2011
====================================== [35] – 11/30/2011 – MRI Scan Day! on Wednesday, 30 November 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/mri-scan-day
====================================== [36] – 12/6/2011 – MRI 2nd Opinion on Tuesday, 06 December 2011.
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/mri-2nd-opinion
====================================== [37] – 12/9/2011 – Cancer sufferer Laura Hymas has miracle ‘cure’
—————————————————————— http://www.kentonline.co.uk/kentonline/home/2011/december/9/cancer_sufferer_laura_hymas.aspx
====================================== [38] – 12/21/2011 – Visit to the NHS Oncologist on Wednesday, 21 December 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/visit-to-the-nhs-oncologist
====================================== [39] – 12/31/2011 – Happy New Year! on Saturday, 31 December 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/happy-new-year
====================================== [40] – 1/12/2012 – What a start to 2012! Amazing News! on Thursday, 12 January 2012
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/what-a-start-to-2012-amazing-news
====================================== [41] – 1/12/2012 – Video Interview with Dr Burzynski about Laura! on Thursday, 12 January 2012
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/interview-with-dr-burzynski-about-laura
====================================== [42] – 1/12/2012 – Video Interview with Dr Burzynski about Laura! on Thursday, 12 January 2012. Click Here if the video doesn’t load –
——————————————————————
——————————————————————
This is an interview with Dr Burzynski discussing Laura’s case and latest scan results!
Please take a look at the video – you’ll be probably as shocked as we were at what Dr Burzynski says at the end of the interview!
======================================
====================================== [43] – 1/13/2012 – Cancer patient’s husband hits back at critics… Jan 13th, 2012 @ 12:54 am › Jonathan Smith-Squire
—————————————————————— http://sellyourstoryuk.com/2012/01/13/burzynski-critics/
====================================== [44] – 2/2/2012 – JustGiving Page & Text Donation on Thursday, 02 February 2012
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/justgiving-page-text-donation
====================================== [45] – 2/4/2012 – Laura & Hannah Video on Saturday, 04 February 2012
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/laura-hannah
====================================== [46] – If youre not able to view the video of Laura and Hannah click here
——————————————————————
This page is linked to:
===================================== Critiquing: Dr. Michael A. Friedman, Dr. Mark G. Malkin, Dr. Mario Sznol, Robert B. Lanman, Memorial Sloan-Kettering Cancer Center, Mayo Clinic, Department of Health & Human Services (HHS), Public Health Service, Quality Assurance and Compliance Section, Regulatory Affairs Branch (RAB), Cancer Therapy Evaluation Program (CTEP), Division of Cancer Treatment (DCT), National Cancer Center (NCI) at the National Institutes of Health (NIH), Stanislaw Burzynski: On the arrogance of ignorance about cancer and targeted therapies
—————————————————————— https://stanislawrajmundburzynski.wordpress.com/2013/09/08/critiquing-stanislaw-burzynski-on-the-arrogance-of-ignorance-about-cancer-and-targeted-therapies/
======================================
[8] – 1993 (10/26/1993) – Burzynski to Dr. Michael A. Friedman
——————————————————————
Dear Dr. Friedman,
In response to your letter of 10/20/1993, it is difficult for me to understand why the entire 1st page of your letter is used to discuss the simplest issue:
that adults should use a different dosage than that used for children
Since you agreed to the study procedure of Protocol BT-6 as recommended in my letter of 6/9/1993, we have not requested any changes in the structure of treatment which was accepted by Memorial-Sloan-Kettering Cancer Center (MSKCC)
As you confirmed in your letter of 10/20/1993, you know very well that since 4/1/1993 of this year my recommended dosage of Antineoplaston AS2-1 for adults is 0.4g/kg/24h
Again, I confirmed that this is the right dosage for adults in my letter to Dr. Shoemaker of 8/24/1993
Yet, for no apparent reason, you insist on using in the adult treatment protocol the dosage 0.6g/kg/24h which I recommend for children
It is generally known that a child’s body weight is much lower than that of adults
This should be reflected in the escalation of the dosages
My recommendation as to how to escalate the dosages for adults was submitted to the NCI on 6/4/1992
Yet, for no apparent reason the MSKCC protocol, which is designed for adults, escalates the dosages in the small increments recommended for children
The principle behind dose escalation is to accomplish the maximum dosage in 3 to 5 days, not 3 to 4 weeks, which would expose the patient to the unnecessary risk of tumor progression
I appreciate very much that you have finally decided to follow my recommendation regarding dosage and dosage escalation
Regarding the number of patients to be treated at MSKCC, the contradictory, incomplete, and inconsistent information is being supplied by you
The MSKCC’s protocol of 4/16/1993, 7/13/1993, and 8/30/1993 describe the treatment of 35,
Pg. 2
but not 70 patients
(please see paragraph 12.1, pg. 10 of the protocol, which is attached)
It was our understanding that 35 patients would be treated at MSKCC and at the Mayo Clinic
I never agreed for the treatment of 70 patients at MSKCC
Since I have to produce the medicine for the trial and pay for it, it is vitally important to me to know how many patients will be treated
The treatment of an additional 35 patients may cost up to 2 million dollars
Contrary to the information given by NCI that we received the money for the production of medicine, this money went apparently into a “black hole”
(“Black Holism,” The Village Voice, 7/29/1993, enclosed)
We have received none of the money which the Office of Alternative Medicine gave to the NCI for funding the trials with our medicine
Contrary to the opinion expressed in your letter, we see no reason for modifying Fleming’s Phase II clinical trial design and introducing more stringent than usual criteria for response evaluation
We request that Fleming’s original design be used, which calls for the initial treatment of 15 patients with at least one responder, instead of 20 patients and 2 responders
Given the fact that there is no existing treatment effective in this type of cancer, one responder in 15 is certainly significant and would be reason enough to expand the trial
I found your your requirement for 14 days to complete scans and laboratory tests prior to treatment very interesting
It is a very well known fact that glioblastoma multiforme is such an active tumor that if 2 weeks elapses from the time of the scan and the beginning of treatment, the tumor may increase by more than 50%
This means that even before the patient begins treatment, he can be classified as an increasing disease case
In most of the hospitals in the U.S., including out tiny clinic, all pretreatment tests including the scans can be done in one day
Therefore, I insist that the pretreatment evaluation, including brain scans, be done within 7 days from the time treatment begins
Regarding the Karnofsky Performance Status (PS), it is unclear to me why you have backed off from your own recommendation in your letter of 5/5/1993 (copy attached) that “patients with Karnofsky PS of below 70% should be excluded”
I am requesting that as recommended by NCI, the patient’s PS should be 70% to 100%
I agree that both scan data and neurological assessment can be described in the analysis of response, but the decision of how to classify response should be based on tumor measurements alone
All of these patients will have been extensively treated before
As the result of previous neurotoxic treatments, a number of these patients will deteriorate neurologically even if the Antineoplastons eradicate the
Pg. 3
tumor
The purpose of the protocol is to evaluate the antitumor effect, not to prove that Antineoplastons can repair brain damage resulting from chemotherapy and radiation
In this 1st independent study with Antineoplastons, in order to assure that patients will derive the most benefit from the treatment, it is critically important to schedule more frequent evaluations of the data than waiting until after the accrual of 14 patients, i.e. waiting 9 months
(Based on an accrual of 2 patients per month, if we wait until 14 patients are accrued and treated, 9 months will pass before the 1st evaluation takes place)
Therefore, I request that reviews of the studies be performed after the treatment of each group of 5 patients, i.e. after 6 months
I agree, however, that you will provide the Theradex printout to us as you receive it
In addition to patient welfare, there is another reason for more frequent patient evaluations
As you stated in your letter, I have no doubt that the investigators at MSKCC have extensive experience treating glioma
However, MSKCC is known to be biased against Antineoplastons
At least 3 researchers associated with MSKCC published willful misrepresentations and distortions about Antineoplaston research
Because of the controversial nature of the upcoming Antineoplaston clinical trials, it is essential that they are conducted in a manner beyond any suspicion of bias
Contrary to the opinion expressed in your letter, NCI is responsible for the trial’s delay
As you well know, the NCI selected an MSKCC investigator in 9/1992
In spite of our repeated requests, 8 months were waisted before the NCI produced the 1st draft of the protocol
As promised in my letter to you of 11/11/1992, the supply of Antineoplastons has been prepared and was shown to Ms. Mary McCabe of NCI during the site visit on 2/9/1993
The medicine was ready to be released pending final approval approval of the labels by the FDA and our final QC inspection
The medicine will be sent to you immediately once you make the corrections to the protocol that we have requested
Since you mentioned that patient recruitment has begun already, I would be glad to accept these patients immediately under my care and offer them free medicine as we wait for the protocol to be revised and the treatment at MSKCC to begin
The MSKCC protocol in its current form would threaten the welfare of these patients
In your letter you stated that your mission is to find and develop better therapies for cancer patients, and that your only obligation is to those patients
However, the way
Pg. 4
you proceed leads me to question that for the following reasons:
1) Out of numerous cancer treatment centers, you selected 2:
MSKCC and Mayo Clinic, which are known to be strongly biased against alternative treatments
In the past doctors associated with MSKCC have voiced strong opposition to Antineoplaston therapy and have published articles full of misrepresentations and distortions
2) The protocol approved by you will allow the disease to progress between the pretreatment evaluation and the beginning of treatment
3) Due to the slow escalation of dosages, patients will most likely have marked increase of tumor size beginning the treatment at the correct dosage level
4) In spite of my numerous requests (letters of 4/29/1993, 6/9/1993, and 8/24/1993) to proceed following the guidelines of the NCI’s Decision Network on 12/2/1991 to have a separate clinical trial for glioblastoma multiforme and anaplastic astrocytoma, you continue to combine both types of tumors together
Even in your most recent stratification strategy submitted to the FDA, you are planning to treat initially 20 patients without specifying whether those 20 patients are per each stratum (glioblastoma vs. anaplastic astrocytoma), or whether this initial group of 20 patients consist of a mixture of glioblastoma and anaplastic astrocytoma
If the latter is the case, then we can expect that among these 1st 20 patients, most will have glioblastoma, which is more common and more difficult to treat
In case of treatment failure in these 20 patients, it will be easy to make the statement that Antineoplastons do not have therapeutic effect in both tumor categories
5) The protocol now states in paragraph 10.2, 10.3, and 10.4 that the objective decrease of tumor size is not enough to be considered a true response to treatment, that there must also be improvement in neurological function
As I explained in my letter of 10/13/1993 to Dr. Greenblatt, it is not unusual in my practice to see patients whose tumor has disappeared, but who have deteriorated neurologically as the result of delayed toxicity from radiation therapy and chemotherapy
Since these patients in the MSKCC study have been pretreated, and since there has been no indication that anything, including Antineoplastons, can repair brain damage caused by chemotherapy and radiation, I request that the criteria including restored neurological functioning be removed from paragraphs 10.2, 10.3, and 10.4 of the protocol
Pg, 5
6) Finally, by limiting our access to the data and not allowing review until after the 1st 14 patients have been treated, it would be easy to deviate from the protocol and supply inadequate treatment, and then claim that due to the the failure of the 1st 14 patients it would be a waste of the taxpayers money to proceed with further treatment
Your final statements that you are ready to proceed with the treatment with Antineoplastons without our participation caught me by surprise
It is hard to imagine that a Federal employee would consider patent infringement, thus infringing on the patent rights of thousands of our shareholders
Once again, I urge you to take our requests seriously, honor the guidelines of the NCI’s Decision Network on 12/2/1991, and make proper corrections to the protocol, so that objective clinical studies can begin immediately
In the meantime, I would be glad to treat for free all the patients presently recruited, and will submit progress reports weekly for the NCI’s review and evaluation
SRB/cf
cc:
Senator Joseph Biden
Senator Barbara Boxer
Senator Dianne Feinstein
Senator Tom Harkin
Senator Barbara Mikulski
Congressman Berkley Bedell
Congresswoman Nancy Pelosi
Dr. Samuel Broder
Dr. Jan Buckner
Dr. Bruce Chabner
Dr. Daniel Eskinazi
Dr. Jay Greenblatt
Dr. Joseph Jacobs
Dr. Mark Malkin
Ms. Mary McCabe
Dr. David Parkinson
Dr. Mario Sznol
Ms. Dorothy Tisevich
======================================
======================================
1993 (10/26/1993) – SRB to [5]
1993 (10/26/1993) – SRB to [14]
1991 (12/2/1991) – guidelines of the NCI’s Decision Network [5 Pgs.]
1992 (6/4/1992) Burzynski to NCI
1992 (9/1992) – NCI selected MSKCC investigator
1992 (11/11/1992) – Burzynski to Dr. Michael A. Friedman
1993 (2/9/1993) – NCI Mary McCabe site visit
1993 (4/1/1993) –
1993 (4/16/1993) – MSKCC protocol
1993 (4/29/1993) – Burzynski to
to proceed following the guidelines of the NCI’s Decision Network on 12/2/1991
1993 (5/5/1993) – Dr. Michael A. Friedman to Burzynski
1993 (6/9/1993) – Burzynski to
to proceed following the guidelines of the NCI’s Decision Network on 12/2/1991
1993 (7/13/1993) – MSKCC protocol
1993 (7/29/1993) – “Black Holism,” The Village Voice
1993 (8/24/1993) – Burzynski to Dr. Dale Shoemaker
to proceed following the guidelines of the NCI’s Decision Network on 12/2/1991
1993 (8/30/1993) – MSKCC protocol
1993 (10/20/1993) – Dr. Michael A. Friedman to Burzynski
======================================
This page is linked to:
===================================== Critiquing: Dr. Michael A. Friedman, Dr. Mark G. Malkin, Dr. Mario Sznol, Robert B. Lanman, Memorial Sloan-Kettering Cancer Center, Mayo Clinic, Department of Health & Human Services (HHS), Public Health Service, Quality Assurance and Compliance Section, Regulatory Affairs Branch (RAB), Cancer Therapy Evaluation Program (CTEP), Division of Cancer Treatment (DCT), National Cancer Center (NCI) at the National Institutes of Health (NIH), Stanislaw Burzynski: On the arrogance of ignorance about cancer and targeted therapies
—————————————————————— https://stanislawrajmundburzynski.wordpress.com/2013/09/08/critiquing-stanislaw-burzynski-on-the-arrogance-of-ignorance-about-cancer-and-targeted-therapies/
======================================
[1] – 1991 (10/4/1991) – Site visit – Antineoplaston Cases (1 pg.)
——————————————————————
1. Histology partial lobe glioblastoma multiforme (GBM)
Size 2.3 cm largest diameter
Response Complete Response (CR) possible
prior Treatment (Tx) Radiation Therapy (RT), surgery
2. Histology anaplastic astrocytoma stage IV grade 3
Size 3.0 tumor 3.5 tumor and edema
Response CR possible
prior Treatment (Tx) Radiation Therapy (RT)
3. Histology infiltrating glioma (astrocytoma or mixed astrocytoma / oligodendroglioma)
Size 4.4
Response good PR, possible CR
prior Treatment (Tx) Radiation Therapy (RT) and BUdR; Procarbazine, CCNU, VCR; B-Interferon; DFMO and MGBG
4. Histology well differentiated Stage IV astrocytoma, possible juvenile pilocytic astrocytoma
Size 5.5 X 3.3
Response 40-50% decrease of solid component
prior Treatment (Tx) vitamins and laetrile
Are you there ?
Okay, we might as well get started if were going to do this
Alright, so ummm I guess we can start with uhhh bit of a conversation
Uhhh
You’ve been on the Burzynski Hashtag for a long time – what’s you’re motivation ?
Okay
So what information have Skeptics posted that they uhhh that they missed that demonstrates that Burzynski’s uhhh treatments are effective ?
What, what have we missed ? Well okay, uh one of the issues that Skeptics have with Burzynski is that in order to, let’s say, elevate uh the profile of his drug, in order to make sure that everybody who needs it can get, is to complete a phase 3 uh trial uh he started uh I believe was it just the one, right ?
Uhmmm, and that’s gone nowhere
In fact, it was withdrawn this I think within the last week
It doesn’t look like its going to happen, and this is, you know, for all the the phase 1 and phase 2 trials, those are very preliminary trials
Uhmmm, the phase 3 is is will be the gold standard, and also the bare minimum that that the larger medical community will accept uhhh as evidence, so it’s like you’ve lowered the bar for for evidence in a way that that you know oncologists don’t
The the
Right
So, do you think that there is a uh uh conspiracy to keep Burzynski from publishing ?
Right
Right
So, uhmmm, as far as I understand it The Lancet, uhhh the the question of The Lancet publication ehhh is par for the course, that most people are, when they get a speedy rejection from a uh uh, uh journal, are actually uh grateful, because that means there allowed to go ahead and submit their material to another journal more quickly and get it out there
Uhm, but the reaction that we saw on the side of the Burzynski camp was that, see, they’ll never publish us
Uhm, which is, eg, taken as far as I can tell as evidence of a conspiracy or that his name is is poison uh I mean, I think it is, but uhmmm, that wasn’t indicated in the in the rejection letter in order to uh claim that it is is to go beyond the evidence which again we’re not really willing to do
So, uhmmm what is the the ration the the something that I think a lot of of a lot of The Skeptics have been curious about when it comes to your your your blog and your behavior on-line uhhh is that that that, that the format of your blog does not make sense to us, we don’t understand exactly what you’re trying to do with it
Could you kind of clarify that for us because it’s uhhh long and it’s it’s intense and there’s a lot of emotion behind it but we don’t understand exactly, what it’s supposed to mean
Alright, ah have you read The Other Burzynski Patient Group ?
So, ahmmm what is your response say to the story of Amelia Saunders ?
Okay, what part of, what did I get wrong ?
Uh was that Amelia and Luna ?
Luna was the other one, correct
Oh, I, you’re talking, oh this is one of the very 1st ones that we did on the, on the site
Uhmmm, oh, her name is, her name escapes me at the moment
Um, but she wasn’t there for for very long but uh her condition deteriorated very rapidly
Uhmmm, and one of the questions that we had, we raised, is is, you know, you you don’t need to reach full dosage ’cause the the full dosage for these ANP seem to be pretty high, at least the sodium load that that that patients are asked to to carry, or required to carry if they they go on it
And we wondered if the sodium load was ah to great for someone who has a brain tumor, I mean uh, you know uh sodium load will increase your blood pressure, and these people have extra things in their brains that probably won’t react well to swelling, right, and and wont react well to pressure, so we were wondering, if in fact you don’t have to reach the full dosage in order to have uh severe side effects
Ummm, you know maybe you haven’t reached a therapeutic dose level, but that doesn’t mean that it didn’t have an effect on her
And you can clearly tell, that, you know in the videos, well at least the videos before the family took it down, that she was lethargic and a little bit out of it, she uh the the difference in her conscious state was no noticeable for anyone to see
Ummm, to, you know where she had been up and about to in her bed kind of slurring and and, and and and, in fact just disoriented, just looked like someone had taken the piss out of her I mean, ummm, so that’s, that one, ummm, you know the critique that, reaching therapeutic levels and having a biological effect on someone are are clearly different things in her case
Uhmmm, now I never went on you know on to say ummm that uh she had uh reached therapeutic levels
Uhmmm, I I think as far as I went was that she went, she paid her $30,000 dollars and then she died
Uhmmm, and and and what part of that’s not true
Okay, so, um, going back to Amelia, um, some of the the most um I think the most serious charges is that we see a uh repeatedly in his uh uh stories of his patients, um those are all cited, those are all backed uh by, you know, um at least as good as anything the Burzynski Patient Group has ever done
Uhmmm, something that we see over and over are patients reporting over and over that signs of getting worse are signs if getting better
Um, in particular a, uh report that’s very common from from patients is that the center of their solid tumors are breaking up
One of the problems that we we we see is that that is more frequently a sign of ischemic necrosis that the tumor has outgrown its blood supply and that it’s dying on the inside
And when you see something like a 5th of the patients who we’ve been able to to document, reporting this excitedly, we get extremely concerned about what’s happening
Uhmmm, what part of that is not absolutely terrifying to you Well, the the yeah I’ve never seen anyone say that the purpose of the antineoplastons is to cause uhhh, you know, to restrict the blood flow to the tumor and and and uh cause it to die that way, which is certainly one therapeutic approach that’s been, that’s been floated and research has been done on uh and might even be promising and uh what he’s saying is that cancer is caused by a lack of antineoplastons in the system and that basically what he is doing is antineoplaston uh uh supplement therapy uh rath, what’s the word I’m looking for, uhm uh, replacement therapy
Uh and there isn’t a doctor on the planet, uh not a medical specialist on the planet, who, I, who has identified at at as a contributing factor as a contributor to cancer or antineo or lack of antineoplastons
So
Why isn’t he, you know, you understand that these doctors, ummm like nothing is true or false because a doctor says it is true or false
Uhmmm it’s it’s it but when the entire medical community uhhh who are des are desperately are are every bit as tired of seeing patients die uhmmm and seeing patients suffer or as anyone else’s families are you you imagine what an oncologist sees in that office over the course of of a year and there’s going to be unimaginable suffering
I’m sure that they’re tired of that
And that they would, you know, that if there was the slightest hint that antineoplaston deficiency was a cause of cancer that it would make it into the literature, with or without Burzynski
Uhhh ummm, why should we trust him when he has uh the sole uh the only person who had identified antineoplastons as a contributor to cancer when he is the sole manufacturer of the of the therapy uh when he is the uh sole prescriber of the therapy and when he is, where the sole distributor of the therapy from his pharmacy
He’s read everything
I think
Can you go ahead and send me that link that that I saw in the chat that you had uh posted a couple of times in the chat
Could you send me that link, to that publication
I can give you a minute to to go find it if that’s
That would be good
Uhmmm Well, yeah that’s a, that’s you know one of the major problems that this this cancer has is the location is such a pain to get to
Uhm, and often when we are talking about these cancers, the thing that gets me over and over and over, and this is something that I’ve learned from from working uh with others on the Burzynski Patient Group is what’s it like to be a cancer patient, only by proxy, man I couldn’t imagine really going through this myself, and, you know I’d hate to see my family go through this
That these people are at what could be described as a low point, they’re um uhhh, you get a diagnosis of uh brainstem glioma the prognosis is very bad
Uhmmm, there are only a few cases of people recovering from that, I mean they’re there uhm uhhh but, you know that it’s an, it’s an extremely grim prognosis
Uhhh and I worry that when they’re in that desperate state and especially let’s talk about the children, you have these kids who are uh you know 2 and 3 and have had this, you know uh awful diagnosis and the parents are willing to do literally anything to keep their kids alive
What protections are in place for patients as far as that these kids are and and their parents are protected
Who had the better results ?
Okay
Hmmm, yeah, the, Guy Chapman has just um uh tossed in a a, a comment
I guess uh that there are a lot of people who wanna talk to you (laughter)
Uh, Guy Chapman has just jumped in and said it looks like you forgot the phase 3 trial is withdrawn and none of the phase 2 trials were published
Uhmmm, this, this is not a minor thing for for for Skeptics
This, this is exactly what will convince us to get on board the Burzynski train is the publication of these trials
But even the preliminary trials, one has been finished, and none has been published in its entirety for over 15 years
When you consider that this is a, as you just pointed out, this is a a cancer, the, especially the brainstem gliomas
That these cancers uh the cases resolved fairly quickly, we know what the outcome are fairly quickly
Ummm, do you have any sense of when these trials are going to be published ?
From Laura ?
Right
When you, when you think about a major, sorry, go ahead
Yeah, right, uh
Antineoplastons has a better rate ?
Right
Right, one of the things that that there there are 2 points to be made here
Uhm, the 1st one is that major pharmaceutical companies that are getting this accelerated approval have a track record of producing results which Burzynski does not have
Secondly, when it comes to ummm the rates of antineoplastons, how can we possibly say without a single published trial he, that he has an improved rate over Temodar or anything like that, and that’s exactly what would show to us whether or not his rate is better, the the types of publications that he’s done, that look really good on paper, ummm, to the to the, the common persons eye are these case series where he goes through and picks out people who have happened to have survived
But what that doesn’t tell us is whether or not the antineoplaston had anything to do with it
What you need to do is go and separate the background noise, the random weird rare but very real survive, unexpected survivals that occur, and separate those, uhhh, from any effect of antineoplaston, he’s never done that
But if you think about that, I mean that if it does have a a an improvement rate above uh other treatments
That still has an improvement rate, you know, that, that would give another option to people, ummm, even if in the aggregate their rates aren’t better
It might work on some individuals tumors rather than on, you know, you you it it is it taken as a, as a lump but extend life by uh quality of life for 3 months or something um in some cases but, you know, it it still has an effect, a real effect, and deserves to be out there
That’s a long time when someone is dying Well, one of
One of the problems that that doctors have in in this country when it comes to doing ummm antineoplastons studies to verify any any effect that uh Burzynski has uhhh I i think back to the one where people say well that the FDA sabotaged his trials, and Well, if if you think about it though, um, the, the proposed action as I understand it of the antineoplaston is that it’s a deacetylase inhibitor, which slightly unspools DNA, that allows uh, which would allow uh proteins to get into a pair of damaged DNA
And we have drugs that do that which carry a much lower sodium load
Uh, um, it, that would have a therapeutic effect on and that the risks outweigh the possible benefits of using this one particular drug
Um, I’ve seen any number of people looking at um, if you look at the Luna ah Pettiguine uh uh story on The Other Burzynski Patient Group um you see that the doctor is absolutely horrified by the insane sodium load that that Burzynski’s patients are carrying
Um in in some ways that that sodium load is uh leading people to constantly drinking up to I’ve seen 12 liters of water a day
That’s not necessary for other deactsylace inhibitors
Um the, why would you prefer that to to another drug if it did essentially the same thing, that didnt have this massive side effect ?
thats not necessary for other deactsylace inhibitors Well that sss I believe that that’s proposed by the researchers, the design trial, you know they they sign off on it but that is is, is up to uh Burzynski uh my uh David James @StortSkeptic on the
ah he has asked everything that Burzynski does looks sort of like the behaviors of pseudo-science
So what we’re saying uhhh he does uh uhhh Burzynski like for instance like I said he has vertically integrated, ah, he controls all parts from identification to the creation of the drug uh to the diagnosing uh well he doesn’t do the diagnosing but he does um um prescribe and distribute, he does all that vertically, which is actually something that snake oil salesmen do
Another thing that that’s a red flag in Skeptic circles is that his one compound seems to be a sort of panacea for all sorts of different types of, of of cancers, um where we know that cancer has a a varied uh, uh, ideology and and the uh panaceas are are are to be and a variety of different types of causes um, in fact in any one tumor you would, you could say that these, these tumors are are completely uh heterogenous
The idea that there’s gonna be one knockout, it seems rather unrealistic
Um, additionally he charges immense amounts of money for this drug, um, even though the components cost pennies
Um, on top of that, um, there’s something that he asks for a a huge payment up front
That’s something that’s been warned against for generations of uh by anti-quack um uh crusaders if if they’re asking for everything up front, then be afraid
Ummm, another thing is that uh the kind of cult that’s sprung up around Burzynski, uh, one that is immune to uh criticism, reason, and pits people who are doing standard cancer research, as enemies, um, creating a black and white version of the world where there are good people and there are bad people
There are people who are fighting the disease, and then there are people who are really helping the disease
I mean, if you look at the, the new web-site by the Burzynski patients fighting back group, they say support the cure not the cancer
That’s a manikin world-view of black and white
Um, these are all huge red flags, that you’re dealing with a quack
Um, why hasn’t Burzynski done anything to change that ?
Right Well, there, this is important
This is really important though
Wha, when she’s talking about, that’s Luna Pettiguine’s mother, is is talking about the costs there
Uhmmm, you, when someone is not insured in in this country,
Ahm, the, the the base cost that that’s calculated is, is the hospital only expects to get a fraction, a tiny fraction of that back from the insurance companies, and that’s why the costs are so inflated
Um, usually, when a patient is self-pay there is a self-pay price which is a more reasonable price
Additionally, all of those therapies, have demonstrated efficacy, and if Burzynski were to demonstrate his efficacy, $30,000 dollars to start on a life-saving treatment for a child would be a steal, and he would earn every nickel of it
Um, so, those arguments hold very little weight with us
He has a a an enormous house that’s valued in the tens of millions of dollars, he could do that if if the other, the other thing he could do, and this, we would love to see him do this, wousa, would be apply to Federal grant
That, that would be amazing, if he could get a grant to study this stuff
But, you know, um, I I don’t think he’d be able to get one, I don’t think he’s shown uh that he can carry off a uh a research program responsibly
Uhmmm Well
Oh he, have you noticed the the, the thing on his web-site where if you make a donation to the clinic it goes directly to him ?
Right You know, you know
Ummm, o-kay
Uh, I want to turn this over to the people who are watching
Um, I want to give them a a chance to address you as well
Uhmmm, hi everyone
Uhmmm, so, um, let’s, let’s wait for for that to roll in, and I do wait to go back to the, the the, the and let’s be very specific about this, the the things that you see on The Other Burzynski Patent Group, a patient reporting that um uh getting worse is getting better
How do you explain that ? Well that’s just a known side-effect, your going to know that going in, but we actually have people say
Are there, why why why not, these people, see this is the thing though
The reason that site was started was because the people that don’t make it don’t have a voice
And when you, when you whittle away, when you only look at the at the, the positive outcomes, which is exactly in Burzynski’s favor to only look at the positive outcomes, and to have no sense of how other people’s diseases progressed, right, you’re gonna get a skewed and inaccurate version of the efficacy of this particular drug Now lets lets lets go back and not talk about Laura, lets talk about these patients who report symptoms of getting worse, as if they were signs of getting better
Some people say that oh it’s a healing crisis or it’s progression of the disease
Or other people say it’s breaking up in the middle, hurrah
No, it’s actually a tumor that’s growing
That record there, that’s being left by patients, whose stories are every bit as important as the as the stories of the patients who have lived, are painting a completely different picture
How do you explain that ?
Are they feeding these people their stories ?
Are they feeding these people their stories
Okay I’m going to go back, I want to point something else out to you
Um, I have to, I don’t remember the exact patient so I have to go back to my web-site to take a look at it
Um
Because we are, because we’re on a Google+ stream that that’s a lot of data it takes awhile to bring up my, my site
Let me
Uhmmm Well, that seems to give him an instant out, no matter what happens
That turns his claims into something that’s unfalsifiable
If I could give you an example of what unfalsifiable is
Um, and I’ll I’ll draw an uh, uh, case, uh hypothetical case of um uh proposed by Carl Sagan as the invisible dragon in your garage
If you say you have have a dragon in your garage, um, you know, you should be able to go over and verify that there’s a dragon in the garage
So let’s say we go over to Carl Sagan’s garage and, you know Well, I don’t see anything Well it’s an invisible dragon Well okay, well then, let’s uh spray paint it Well, it’s incorporeal Well, uh, let’s measure for the heat of the breath Well it’s heatless flame that it breathes
And, you know, okay, well then we’ll put flour down on the ground to see that it’s it it’s standing there
And, oh no it’s ah it’s floating Well, you know, at some point, when you can’t falsify something
When you cannot, even in principle, prove something false, it’s indistinguishable from something that’s not there
And that kind of out, that oh well the tumor can keep on growing
Th (laugh) that that that’s an invisible dragon, as far as I can tell
A every time that I and and and and , and David points this out, that um, you you know your not going to speculate about the the FDA but then at every turn your invoking the FDA as being obstructionist
I, I just find that to be contradictory and and self-defeating
Um, let me see Well, that’s not necessarily true
I mean uh when it when it comes to the case um I’ve i’ve talked to oncologists about this
And when it comes to uh for instance in in this case it sounds like it was a pediatric patient who was dying, ummm, who had died, ummm, the,
the 1st inclination is to ascribe the death to, um, to the tumor, which actually, would be to Burzynski’s benefit if there were other cases, I’m not saying there were, but if there were other cases where this type of complication arose, and it was ascribed to the tumor they might well not do it, uh, do an autopsy
Um, it’s ah as you could imagine it could be very difficult for the families to do that especially when they have ooh ah, a possibility of what, you know, led to the ultimate demise, that didn’t involve them ultimately somehow being responsible for it, right ?
So, it it it doesn’t seem to me that necessarily an autopsy would be um a a done deal
Um, let me see
No we don’t and it would be irresponsible to completely speculate on on, on, the outcome of that uh, uh, uh, individual patient, I am still scrolling through looking for this story that I wanted to talk about
Uh, and, I guess I’ll
It should be in Amelia’s I I, I packed Amelia’s story with all the stories, um, that I could find um in what we’d written up already
Um
Hold on a sec
She is a cute kid though
Um, alright
Now, our favorite oncologist (laugh), as you keep putting it, um, uh, with with the Amelia story, um, uh, was able to correctly determine that the Saunders family, had a, did not understand the significance of this cyst that had opened up in, uh, that had opened up in the center of the tumor, in fact they were ecstatic
They were delighted
Um, the family, of Haley, um, S, also
Uh, the the family of Haley S., also, had the same reading given to them
Um, the same diagnosis uh same prognosis was to, was given to Justin B in 2006
A similar cyst in Lesley S’s story uh ah, was in 2006
Um, and that kept her on uh treatment for a a another month so that could be another $7,000 some odd dollars
We same thing in the, in the case of, uh, Samantha T in 2005
We see it again as far back as 1994, in Cody G’s story
And then lastly and and the worst uh thing that we’ve seen, the patients report that Burzynski himself told Chase uh Sammut
The exact same thing
Um, and that was a
Have you read Chase’s story
It would stick with you, because that case is grotesque
The parents, uh, there was even a uh, uh, a fight over whether or not the parents should be allowed to continue treating this kid
He was basically lying, uh, in a uh uh brain dead uh for all intents and purposes, uh, in a in a coma uh without possibility of reversal, in his parents living room for months
Um, eh, all the while, he’s still on the, uh, well I don’t actually, I can’t say that, I don’t exactly know if he was on the treatment the whole time
Um, but, we do have this pattern, that is there, of people believing, that this particular pattern is, uh, progress, a a is not progression of disease but is is inducement to to stay on, um, eh, and this has been going on for decades
Eh, eh just based on what we’ve been able to find that patients have been reporting this for decades
At some point, you would think that a doctor would realize that perhaps what these patients are walking away with is inaccurate
Why hasn’t that changed ?
E wel that that that that’s not it
This is this is like the 2nd day of oncology class, that that’s what the tumor looks like
People are reporting that the tumor is no longer growing, um, or that the growing has slowed after they’ve started Well, okay
There, there is an explanation for that, and why you can’t take that as necessarily being evidence of efficacy
Ah, the tumor grows exponentially while the resources are available to it, but then it reaches a point where it’s a self-limited growth, so it, the time between uh doublings in size decreases logarithmically
Um, so this is, this is like basic tumor physiology that we’re talking about, and his patients don’t leave his office, knowing these facts, for decades
This doesn’t have anything to do with the, do with the drug
This this
But, but when it’s, this treatment is working or this is not evidence that the treatment is working
That’s pretty basic
I mean we’re not, we’re not talking about deactsylace inhibitors or anything like that were you’d really need to know something about
This is, whether or not, you’re getting the outcome that you want
This is the whole reason for going
And it has nothing to do with the with the with the drugs
Which is, which is like which we just pointed out was a was an invisible dragon
you’re you’re you’re assuming
You’re you’re you’re assuming that
You’re assuming that
Um, I’m not assuming that
Ultimately it would, but whether or not it it it had a genuine therapeutic effect is a different matter all together
Um, this, what would, what would convince you that you’re wrong
So you’re saying because the Orphan Drug Designation and the face that there’s a phase 3, therefor it works ?
So what you’re saying is there’s nothing that would convince you now, that it doesn’t work
O-kay
Um, it’s it’s it’s not the FDA’s, but you understand it’s not the FDA’s job to tell someone that their drug doesn’t work
it’s it’s it’s up to Burzynski
It’s up to Burzynski to show that his drug does work
And it’s always been his burden of proof
He’s the one that’s been claiming this miracle cancer cure, forever
Um, I don’t know if you’ve read Jaffe’s book
There seems to have been a lot going on there you really should look at it because it’s it’s it’s kind of revealing
Um, that that that it seems that there was a lot of political pressure applied to the FDA which may have been, uh, uh, have influenced the way in which these these trials were approved
I I would say that it is a genuine con uh uh bit of confusion on the parts of Skeptics
We don’t know why the phase 3 trial was approved
I don’t know that we’ve seen even the phase 1 trials, we don’t know why he’s getting a phase 3
And there’s a real story in that, we think
Um, that we’d love to see, however we can’t see, however we can’t see it because of proti protri proprietary uh protections that the FDA is giving to Burzynski, right ?
They’re not sharing his trial designs because they are his trial designs, right?
That the makeup of his drug that he’s distributing are his, uh design, and his intellectual property
So the FDA is protecting him, uh from outside scrutiny
While you may imagine that that, that that the FDA is is somehow antagonistic toward him
They’ve given him every opportunity, over 60 opportunities to prove himself worth uh their confidence and hasn’t
Um, but I definitely recommend that you look at Jaffe’s book and you will see, I think, um that um it’s called um, uh Galileo’s
You know what it’s called, okay, yeah
Um, definitely look at that
Um, you, you will see, the ways in which, the way that we got to this point, isn’t necessarily having anything to do with the efficacy of the drug
That comes across very clearly
Um, you, you mentioned it yourself, he he’s done well to listen to Jaffe’s advice, right ?
So, there there’s a lot to that
Um, uh, but yeah, let me go back to the Twitter feed
Um
Well it sounds to me like they’re they’re not um, the the the you know, they’ve put the clinical hold on now because they now have evidence that somebody may have died because of the treatment
Um, I don’t know what the state of that is right now
Um, uh, oh my gosh, um, let me see
Someone has just sent me a, a ah a link to, are you following the Hashtag, as this is going on
Okay
I’m doing, I’m doing the 2 things at once and it’s um, ok ok well it’s well ok I can’t I can’t go in and read that right now
Um, I would, ok let me tell you exactly what it will take, for me to come around and promote Burzynski
Um, for me, he needs to get a publication in a uh, yeah, uh uh uh publication in a peer-reviewed journal, a respected peer-reviewed journal, not like the the Journal of Medical Hypothesis or things we just made up
Um, something, you know, a a good, respectable journal that oncologists would read, that research oncologists would read
I would need an completely independent group to replicate his findings, and then I’d be all for it
I would say that right now, the business model that the Burzynski Clinic seems to depend on, as best as I can tell from an outsider, that, um, uh, that it depends on people paying money up front
It doesn’t depend on him developing and taking away a viable drug, that he can market to the entire world
His business model as best I can tell, is to keep it in house
That seems, if it works, if his drug genuinely works, and he hasn’t sent it along to mass approval, where he gets, for a couple of years at least, you know, exclusive rights to produce and sell this stuff, for one of the most intractable diseases, uh that man eh can can can, you know, can get, um, that suggests to me that there’s something else going on here
Now, someone has just sent a a note, uh that he has failed 3 different Institutional Review Board audits; this is Guy Chapman, uh no other institution has a 3 for 3 fail, according to to Guy iye he knows no other one
Um, that 45% of phase 3 clinical trials fail due to deficient phase 2 design
Um, he has an approved phase 3, but phase 2 was deficient so phase 3 fails
Do you think that that could possibly have anything to do with why we’re not seeing the phase 3 advance
He’s claimed
He’s claimed
That’s a different thing altogether
And in fact
Well, you understand why they do that, because in order to, it’s
No, they do do this with other drugs, well, it depends on the type
Some drugs it’s ethical to give something completely questionable, what they want to make sure that they at least get the standard care, you know which includes radiation
Um, and radiation does seem to extend life, reduce the size of some tumors some times
Um, do you concede, that in order to have a phase 3, you do not need to have a successful phase 2 ?
When 45% of phase 3 fail because they have a deficient phase 2 design, do you concede that ? Well, ok
It doesn’t matter where
It doesn’t matter where it comes from uh, um
So-kay, um that would be shooting the messenger as opposed to dealing with the question, but
the idea, the best, well, the best, well in that case the best response is “I don’t know”
There’s something that that we don’t know, you’re coming, honestly we didn’t know what to expect when we talked to you
We, were looking at the design, of your web-site and wondering whether or not we would be able to get a a coherent sentence out of you, because the web-site is disorganized, uh
Um, at at at at least it’s the organization is not apparent to the readers
Um, and um according to
No, that is tied together
But let me, we know that that the the, the central concern is Burzynski
Ah, the source of this ah of of those #’s that I just gave you, Chapman has just updated me and he says um that it is, and I’ll go back to the, the ADR research . com issues in clinical research, so it’s the question, Bay Clinical uh Research and Clinical Development, a white paper called “Why do so many pase 3 clinical trials fail ?
Uh, it’s prepared by Anastassios Retzios, Ph.D
Is Anastassios Retzios reliable ?
There is a correct here
Exactly
That’s the right answer
You don’t know
You don’t know
You need to look into it
Alright ?
Before you dismiss it you have to look into it
Everytime somebody throws uh uh something to me, I have to look into it
That’s just, it’s my responsibility as a reader
Um
What, what stuff would you like
What stuff would you like me to do ?
I generally, I don’t read your blog
Uh um, alright
Okay, I’ll look at that, and I will respond to it once I’ve taken a look at that, okay ?
Um, and I’ll respond on your web-site
Um, seems only fair
Um, one question I’d wondered, what is the Didymus Judas Thomas reference to
Oh, so this is the Doubting Thomas
This is the Doubting Thomas
Okay, so this is the one, you show me the, you put your your, the, your hand inside the wound You know, Jesus says, basically, ok, bring it on, check me out, right ?
Okay
Alright
That that, I didn’t, I didn’t realize that he was also, that that was the same guy
So, it’s it’s the Doubting Thomas
Um, what we would say, um, is that if Burzynski is the savior that he claims to be, that he should, open up his trials, he should open up his uh research uh protocols um and just say, “Look, bring it on”
Check out these wounds
But he’s never done that
Instead he he he wants us to just take the words of of of of his apostles
I don’t necessarily trust his apostles
I don’t think that they’re unbiased
I wanna see the data
I wanna see the the wounds in his hands and the the mark on his side
Oh, hey when when we talk about The Other Burzynski Patient Group, I don’t make any pretensions to make that my site proves anything
I I I really don’t
It’s not my job to prove anything
It’s Burzynski’s job
It is a researchers job to prove these things
But we just pointed out, we just pointed out, that the FDA, often approves, phase 3 trials, based on flawed phase 2 clinical trials
That is therefor a real possibility in this case
Yes you would
T t and what I would honestly expect and hope, is that you would be honest about this, to yourself, and and and that’s the thing we don’t, we often don’t realize that we’re not being honest with ourself
I try to fight against it, constantly
But, um, uh but the way that you’d earlier phrased your uh your response to “could you possibly be proved wrong ?”, . . really did exclude other possibilities of of of of yourself being wrong
So if the FDA Well I’m not talking about the Guy Chapman
What you off, when I asked you, yourself, you know, what would prove you wrong, you said that the FDA hasn’t approved a phase 3 Well, ok
Let’s let’s back, let’s back up
What would the FDA, what happens if the FDA occasionally op op opposes, approves uh phase 3 trials, based on bad phase 2 trials
Would that be, would that cause any doubt in your mind ?
About the efficacy of ANP
Yeah, hello, yeah, you’re back
Yeah Google+ is a little wonky sometimes
But, would, does, if you were to learn, that sometimes phase 3 trials, uh, are approved, and failed, based on flawed phase 2, would, would that make you reconsider your position of the phase 3 being evidence that it works
Uh um could you send me that link, the, the, um . me see
I’m just looking at other things that are coming in on the Hashtag right now
Um, so the ANP is Orphan Drug status but is it Orphan Drug for glioma ?
Is it sodium phenylbutyrate or is it the the versions of the drug, the AS10 stuff or A1 or whatever it’s called ?
Okay, that’s what has Orphan Drug status
Alright, I’ll look into that I hope somebody is writing all this down out there, so that we can go back and look at these claims later, right ?
So, oh, um
Do you have any questions for me ?
I’ve spent a lot of times asking questions of you
Mhmm
Guy Chapman, throws up the the, the comment, permission to investigate is not evidence of anything other than evidence of a valid protocol, not a uh, evidence of efficacy, in and of itself
That’s another comment
Um, alright then, this is your chance t, there are lots of people have lots of questions about me out there
Uh, about what my motivations are and such
I might as well put that out on the table just so it’s on the record, is that I am taking exactly no money from anyone for this, and have gotten nothin’ but grief from a lot of people, even people who, even people who support me have given me grief for this
Um, just so that you know, um, there have been, some of the things that have happened, oh, this is an important point too
Um, that when we have criticized this, uh, a # of us, especially Gorski, uh myself, uh Rhys Morgan, uh, um, and and uh Popehat, the the lawyer, blog, uh, um, who else was on there, um, oh, the Merritts, uh, t, uh Wayne Merritt, and his family, people have been critical of of of Burzynski have faced retaliation for opposing him ah and intimidation, and including, um, I had my uh a couple weeks before Christmas my, my, the Chancellor of my University was contacted via e-mail, and uh Eric Merola said that I had been um, uh, been spreading mis truths about Burzynski, that I had been a be, on my my show um had said things that were demonstratively untrue, and he also said that the drug was FDA approved, which it, you know, that’s not right
But um, he said that he was gonna do, talk about me in his new movie, in, uh, relat, in millions of homes, um, and he wanted to get a statement from the University
The University of course ignored him, and immediately let me know that I was going to get smeared
Um, I consulted my lawyer and uh uh, you know, the best course of action was figured out, and um uh a Gorski has had his accreditation board contacted, he’s had his bosses contacted, Rhys Morgan received threats of liable suits from somebody who had been hired, by the clinic, to clean up his on-line reputation if he didn’t take down his on-line review of Burzynski, uh, had his a picture of his house sent to him, clearly the message being, “We know where you live kid,” uh, Wayne Merritt; a pancreatic cancer patient, this is something that, that people generally, do not recover from, like generally, die from, received phone calls at home, from, this individual, threatening him with lawsuits; he doesn’t have a law degree so he’s misrepresenting himself
Um, but all of this, was done, to critics
Do you think that is deserved ?
Do you think that that is right ?
Mhmm Well to be fair
It it it doesn’t strike me as necessarily a “Free Speech” issue, you know
Was it down-voted ?
No
Mhmm
Mhmm Well we do have for for for for one thing, um, I guess to understand is that we are uh motivated by um uh a respect, this is the one thing that that all Skeptics I think um are uh respect critical thinking, um, and um respect scientific uh a we we’re mostly scientific enthusiasts, there’s some Skeptics who are not um, uh, you know oh u space nerds, or whatever who are um just sc scholars and the humanities but for the most part we all respect scientific consensus and we respect scientific method and have an enthusiasm for living in the real world, this is something that like all of us us are about
And to that end, sometimes that influence is how we run, is how we decide to run our personal web-sites
Um, uh, that whether or not we want our, to give a platform to people who disagree with us, um, you know, uh, when we do, uh . . it it is our sandbox, you know, right ?
This, this, we’re allowed to to let whoever we want into our sandbox if we, you know, uh if we want
Did he, did he leave them up ?
Did he leave them up ?
Right, um, do you think that he is required to answer you
Right
Mhmm
Um so a a question uh why were why do you have so many Twitter and Wikipedia sock-puppets
Wikipedia
You left Wikipedia
Mhmm
Um a
Uh We have uh a response from David James, everyone uh gave you a fair shout
You were a spammer plain and simple
You couldn’t, you couldn’t
work out your questions
Twitter does not
Twitter does not block people for for arguing
Only for spamming and policy violations
Mhmm
Okay
Um, let me see
Each new account was blocked for additional violations of policies
Um, this is a uh uh referring to the Wikipedia rules too
Um, so
Um, Wikipedia, do you know why um they’ve locked the Burzynski page ?
Did you notice the part where he threatened, did you notice the part where he threatened to expose Wikipedia
We have to, well, they they uh are looking that it’s not one-sided information they want to show
Like they discuss, there is controversy about this guy
Yeah, Jaffe’s on there
Jaffe’s on there
uh well you could add that if you hadn’t gotten blocked
Okay
Um, so, who are you
She’s gotten threats
So we don’t know who you are
Like, she has suffered at the hands of some really mess, and she’s also, you have to realize she’s in the U.K, where libel laws are very lax at this point
That’s changing, ah, but uh, the the legitimate criticism, there is a big case last, me maybe 2 years ago of Simon Singh, talking about an alternative therapy, and, um, he was just saying that there’s no evidence for it but it’s promoted by um chiropractors, or something, or something like that
And he got slapped with a libel suit that cost him several years of his life and a lot of money
Um, so, there are several reasons why someone in the U.K. might uh be uh reticent to use their real name um, uh, and legitimate reasons
Um, in the U.S., I’m not sure that there is
I’ve been using my real name for a long time now
Um, you know, Gorski blogs under his real name, and is critical of uh, uh, also, let’s face it, everyone know, knows who “Orac” is
Um, how do we know that you don’t work for the clinic ?
Mhm Well see, one of the the problems is, Ju, I don’t know if you were around for the BurzynskiSaves thing
Did you ever see that account ?
Mhmm
Right
Oh no, I mean you have a right to do that but but I I’ve found that posting under a pseudonym diminishes my credibility
Um, so, . . the quote was uh um, uh, “Happily promotes bogus therapies,” was Simon Singh’s quote that got him sued
Um, but Josephine Jones does it to, quote “protect her family”
Um
So there’s that
Um, are you afraid for you’re family ?
Um, you don’t see that there would be anything to gain from, from going on-record ?
Um I I haven’t, I’ve never, honestly, I’ve never seen a Skeptic actually go after a person individually
Um, you know, uh, you, unless they were doing colossal harm to people
Um, to to focus on an, uh, let’s say, call someone’s work for um, yeah
Cite one example, of a Skeptic making shit for a Burzynski shill or anyone else in real life
That’s a quote
That’s, that’s something coming in from, from Guy
Like had anyone ever contacted Sheila Herron, or has anyone to to um, go after her job, or go after um, you know, my brother has gotten stuff from people
He didn’t tell me because he didn’t want to upset me, but my brother gets things from Burzynski supporters that are violent and threatening
I get letters telling me that I suck cancer’s dick
Um, I I’ve all sorts of things um, and I just, I’ve never seen that, that intrusion into real life on the part of uh, um, uh, Skeptics
I’ve never seen them doing that type of of of stuff
I’ve never seen them threatening bogus lawsuits
Um, and I I I wonder there, if there is some sort of, what do you think accounts for that, that difference?
Mhmm
Mhmm
I’ve I’ve I’ve shown up on, you know, as you, as you might, I imagine you moni, you monitor the Hashtag, right ?
Okay
Um, which is, which is your right
Um, uh, but every so often I jump in and say, you know, this movie has some flaws in it You know, that’s something I say rather frequently
Um, and I invite people, if they’re interested, to take a look at a couple of links
I don’t, I, you’ll notice that I no longer force people to like, “Well how do you explain this ?,” because that doesn’t seem to be very persuasive, or work at all
Ah, only people who are open minded to having their mind changed, those are the only ones I want to talk to
So I give them a choice
Kind of like Morpheus in The Matrix really
Um, b, that was a joke for me
Um, um anyway
Um, but, it it I, honestly, I would encourage you to go on-record, um, but I have, less than nothing invested in that, so, um
Uh, what’s next for you Well what happens Well what happens if he doesn’t understand what you’re saying ?
I mean one of the
I mean seriously Well, one of the problems I think that a lot of Skeptics have had, in in back channel discussions about this is that we don’t understand exactly what you’re saying
We certainly don’t understand why you’re so attached to him if you’ve never had any uh, you know, close dealing with uh, uh, with Burzynski
We don’t really understand that
Actually, especially when you consider, that all the information that we’ve put forward, that we’ve backed up with statements from uh, you know, uh, it, it, the statements that we have from from patients saying that you know, we’ve we’ve, we were told that, no that’s not exactly, they put it usually that but that that we believe that getting worse is getting better
Like how could someone continue to defend someone, when we pile up all of these different, you know, sources, saying the same thing ?
It it is, it is beyond us and we wonder if there’s absolutely anything that we could say that would convince you otherwise
But, I mean, but that means
Everything on The Other Other Burzynski Patient Group is referenced
It goes
There’s very little on
thehoustoncancerquack
There’s very little on
thehoustoncancerquack in the 1st place
Eh, right
The they both go to the same place
Uh un but, you know, we, the thing that that totally befuddles us, and is just endlessly frustrating, is like how many more examples, of patients believing that getting worse is getting better, and it’s not us saying it, it’s the patients saying it
And how many more of those patients do we need to to give you before you will like reconsider that perhaps you might be wrong ?
I don’t, the thing is though that, that that’s a inver, shifting the burden of proof off of Burzynski
Burzynski has to prove them wrong, has to prove him right
The FDA is not there to say this doesn’t work
The evidence would be
The evidence
The evidence would be phase 2 trials
And ev the evidence would be a completed and published phase 3 trial
That’s not forthcoming
The phase 3
You don’t know that he’s trying
He’d start completing these trials
And he would, he would be soliciting um, uh, lots of um, uh, you know, you know he’d be putting out papers constantly um and if the the British Medical Journal example’s anything uh representative of how Burzynski works, he’d immediately tell everyone that his he’s being . . blackballed by the, by the journal, even when it’s just a courtesy that he gets a a rejection
So, I mean, honestly, um, saying “Well, when the F, FDA tells you that it doesn’t work, the FDA’s never gonna say that because that’s not their job
So, given that what would, how many more patients do we have to show you before you consider that you may be wrong ?
That’s not an option, because they’re never gonna do it
They relinquish, a lot of authority, over to Burzynski, and his Institutional Review Board, which, I would mention, has failed 3 reviews in a row
Right ?
It is Burzynski’s job to be convincing
It is not our uh, uh, it it it he hasn’t produced in decades
In decades
In hundreds and hundreds of patients, who’ve payed to be on this
Hell, we’d we’d we’d like a prelim, well when you’re talking about something that is so difficult as brainstem glioma, that type of thing gets, really does in the publishing stream get fast-tracked there
they test it
Yeah, and they they they want uh, that was evidence of fast-tracking is what, that rejection was uh e was very quickly
Um, so, uh, uh again, the FDA is not the arbiter of this
It’s ultimately Burzynski
So, how long will it be before Burzynski doesn’t publish, that you decide that uh perhaps he’s he’s, doesn’t have the goods ?
You’ve been speculating about what the FDA’s motivation are like crazy
Why not speculate about Burzynski a little bit Well actually I’m not even asking you to speculate about Burzynski, I’m only asking you to tell me, how long would it take, uh how, for him to go unpublished like this, um, for this long, before you would doubt it ?
What ?
But these but but but that doesn’t have any bearing on
That doesn’t
Oh I’m not asking you how long, how long, would it take you for you to start doubting whether or not he has the goods ?
How long would it take ?
It’s a it’s a it’s a question that should be answered by a number uh uh months ?
Years ?
How long ?
It’s been 15 years already
I could push it back to 36 years
He hasn’t shown that it works for 36 years
I can do that
I was being nice
Perhaps based on bad phase 2
He withdrew
He withdrew the the phase 3 clinical trial
I that before recruiting,
although I’ve seen lots of people say they were on a phase 3 clinical trial
I wonder how that happened
Uh did do do you think that if they thought that he was a real doctor that they all would have refused like that ?
He’s changed things
That The Lancet is a top-tier journal like New England Journal of Medicine
It’s basically be, besieged by uh 100′s of people submitting their, their, their reports
Um, it’s just, you know, let’s say he, someone has such a thin publishing record as Burzynski does, do you think that it’s likely that he will ever get in a top-tier journal ?
What about the the Public Library of Science ?
It’s not the only journal there
What about BMC Cancer ?
There’s lots of places that he can go
Um, and he doesn’t seem to to have evailed himself of that, as far as I can tell
And I would know because he’d get rejected, or he’d be crowing, you know
Either way, he’s gonna tell us what happens
He told us what happened with The Lancet, you know
I don’t have any evidence that suggests to me that he’s even trying
So let’s go back to this
How long will it take ?
How long will it take before you, the Japanese study’s interesting too because we should be able to find that in the Japanese science databases, and we can find, we can’t find it at all
We can’t find it anywhere
And, and those are in English, so it’s not a language problem
We can’t find that anywhere
We’ve asked
We asked Rick Schiff, for, for that study
And, and it hasn’t come to us
He is now I believe on the Board of Directors, over there
He should have access to this
We can’t get it
How how long will it take before you recognize that, nothing is forthcoming ?
How long would that take ? Well, I mean, were talking about a blog here
We’re talking about life
No, we’re talking about a blogger’s feelings in that case
In in this case we’ren talking about, 1,000′s of patients, over the course of of of generations, you know
This is important stuff
This is not eh eh equating what’s happening to to patients with what’s happening to you is is completely off-kilter as far as I can tell
It’s nothing
It’s nothing like you not getting to say something on my web-site
You know
This is they they have thrown in with Burzynski, and they’ve trusted him, and he’s produced nothing
Nothing of substance
Nothing thas that has made all of that um, uh, n nothing th th th that uh his peers would take seriously
The other thing that that that strikes me now is that, you know, you you you you keep saying that, well Eric is going to to share things with you
Does it ever concern you eh uh eh occur to you that Eric might not be reliable ?
He then, and then he
And then he he, you know, the the the the dialogue that sprung up around that was, well see, he’s never going to get to get published Well you’re just setting yourself up for wish fulfillment
You want him to be, persecuted, so you are ecstatic when he doesn’t get to publish, which is unfortunate for all the cancer patients, who really thought that one day, all the studies were going to be published
Where has Eric been wrong ?
It’s it’s it’s it’s a form letter You know
They’re just saying, “No thanks”
“Thanks, but no thanks” is what they were saying, in the most generic way possible
Like I said, they’re besieged by researchers trying to publish
So, so, possibly
So possibly what you are saying is that they in fact have read it, and after having read it they’ve rejected it
Is that what you’re saying ?
Because that’s what peer-review is
Do you know it was the same editor, that it came from the same desk ?
You can’t make that assumption that that the form letter will be the same form letter every time
I mean you just can’t
I mean in in some ways we have a lot of non-information that you’re filling in, with what you expect, as as opposed to what’s actually really there, and I I I just think you’re putting too much uh stock in one uh, uh, in in in in this uh the publication kerfuffle
Um
Well, not necessarily
I’ve been in any # of professional groups where the organization is just not optimal, and publications certainly th there are all sorts of pressures from all sorts of different places
I I have no problems whatsoever with seeing that this might not be completely uh um uh streamlining uniform processes as possible
The fact that it’s not uniform, doesn’t have anything to do with Burzynski not publishing, not producing good data
Not just going to a, you know, god, even if, even if, let’s put it this way, even if he went to a pay to play type publication where you have to pay in order to get your manuscript accepted; and he has the money to do this, it wouldn’t take that much, and he were to put out a good protocol, and he were to show us his data, and he would make his, his his stuff accessible to us, then we could validate it, then we could look at it and say, “Yeah, this is good,” or “No, this is the problem, you have to go back and you have to fix this”
Right ?
So we really, every time we talk about the letter that he got, yeah that doesn’t have much to do with anything, really
We wanna see the frickin’ data
And if he had a cure for some cancers that otherwise don’t have reliable treatments, he has an obligation to get that out there anyway he can
And if if peer-review doesn’t, you know, play a, if peer-review can’t do it, you know, isn’t fast enough for him, then he should take it to the web, and he should send copies out to every pediatric, uh, you know, oncologist that there is
That’s the way to do it
Oh I, I I I certainly don’t think that he would put a lot of stock in it, but I, I, I know Dave Gorski enough, he wants this to work
He has patients who are dying, you know
And if if if let’s say that that Burzynski could get ah his gene-targeted therapy to work on breast cancer patients in in a reliable way, that would be, such a help to these people, that that Gorski’s trying to help
And, it it it doesn’t make sense, I mean, there, some of the best um, one of the the most important developments in medical history, was the development of of just washing your hands uh uh before uh uh going in and delivering a baby
Right ?
The guy who did it, was a colossal jerk, but it still worked and it’s the standard now
Right ?
Um, yea, it doesn’t matter now whether or not Burz, whether or not Gorski agrees with how Burzynski publishes
It’s the, it’s the data itself
If if Burzynski is is, is confident in his data, he will put it out there
Right ?
One way or the other
But he is a, the thing is, the thing is, you thing you have to understand is Gorski, Gorski is a genuine expert, in matters re re regarding on oncology studies
I mean, he has a
He, He’s able to convince people, he’s able to convince people, on the strength of his record, to give him money to carry out research
People who know what they’re talking about
To give him money to carry out his research
Right ?
Well what about all the other physicians, um, going back long before the Burzynski thing broke on-line
Of all these patients, with whom they have long-established relationships, and then doctors essentially after years, of treating these patients, basically saying, “I can’t work with you anymore if you go to Burzynski”
What about that ?
Di, are all of these doctors just as biased ?
Did he get burned at some point ?
We don’t know
Yeah, well, you wouldn’t expect Eric Merola to say that he got, that a doctor got burned
Would you ?
But he, he doesn’t have, he hasn’t given us his data
He’s given, he’s given, he’s given case studies
He’s done
Okay
Except for a ph, completed phase 3 clinical trial
Yeah
One of the things, one of the things that I’ve noticed going through these um, well, well there there is that
Uh, Guy Chapman, “It’s a blog, not a peer-reviewed publication”
Um, almost no treatment goes out without trials
Massive amounts of data are required
Um, so, it it is kind of, slightly disingenuous to hold uh Gorski to the same . . standard that you would, it on his blog
I think that professionally he would make, he he he would follow-up on these things, but u what I’ve noticed when you you mention these other people who are working with with Burzynski as co-investigators, the co- investigators don’t seem to have access to these, to these records
Um, you know, when they have to, when a patient has to, and often you have someone like a pediatrician, uh, signing on um uh to eh eh to work with with, uh and arrange care for patients when they’re out of state, away from Burzynski
Um, it’s it’s it’s often not an oncologist
It’s accurate to say that B Burzynski is not a board s uh certified oncologist
It’s accurate to say that no trial has been completed and fully published
Um, yeah it’s um, it it it if, all of the arguing on behalf of Burzynski doesn’t give him a single phase 3
It doesn’t give him um a uh uh of of a completed and and published phase 2
Uh, in in in that sense, you know, uh all the the the, you know, kind of back-peddling and and and trying to defend him is is going to, not going to help his case at all
You are, honestly as far as I can tell you are doing the um, you know, you’re you’re ah throwing up uh, uh, uh, you’re giving me another uh invisible dragon in the garage, um
What is the issue were not talking about
Yeah, but they
But they have track records that support the idea that you should trust them
Okay, so
What you’re telling me is that you trust the FDA to to be able to tell you when he’s not doing, good science, but also that you don’t trust the FDA
Do you see an inherent conflict there ? Well, when I, whenever I would ask about, like, why would these trials aren’t happening uh and, you know, you say well the the FDA’s arranged it
The FDA’s in control
They sign off on these things
But they’re they’re they’re they’re at the same that they’re, they’re trustworthy they’re also not trustworthy depending on what you need for the particular argument at the time
You’re suggesting that they’re untrustworthy
I I would say that the the FDA has given Burzynski every opportunity for decades
Every opportunity
When he didn’t have r r really, he got special treatment as far as I can tell
Uh, the, I’m rather stunned every morning I wake up and don’t see in the paper, that that place has has been closed down
I, I really am
Uh, so, you know, that one doesn’t really fly with me either
Um
Do you know that the FDA pulled out of the prosecution ?
Did you know that the FDA pulled out of the prosecution um of his criminal case, because they were backing a researcher ?
Yeah, the the the it wasn’t the FDA who was pressing charges, it was a Federal prosecutor
Right
And and, they declined to provide information that the prosecution needed
That’s important
That that that’s really important
That he has been given the benefit of the doubt, and he has come up wanting, for decades now
The, no, claims works
He claims works
One of the things I think
One of the things that I think is happening here
One of the things I think is happening here, is that lots of people have worked with Burzynski and then have stopped working with B Burzynski
Uh, you know, uh lots of uh uh uh these partnerships do not seem to work out in the end
I often wonder, if the uh, the way that these things are, are are playing out, because it’s s so reliable that they’re, that these partnerships are going to fail, I I wonder if th they are designed in such a way, that for instance, um a, uh, a a partner would be uncomfortable working
with him
Or um or that the specifications for what it takes to enter one of these trials is so high, that nobody will ever enter the trials
I mean, I wonder if they are, what, especially, like why hasn’t Burzynski left the country ?
That’s what I want to know
Exactly
If he was so, if he was s so persecuted and really cares about getting his treatment out to the world, why wouldn’t he ?
They’re, they’re lots of things going on here
David James has pointed this out, that a lot of questions I’m asking are not going answered
“I still don’t know how long it would take before you would have any doubts about Burzynski”
“I still have no idea, how often we can see patients reporting that signs of getting worse are getting better, before you would change your mind”
I’ve made it very clear that he just needs to have a completed study published and replicated before I support his right to go out and charge people what he’s charging for these, for these drugs, and I’m I’m just not seeing that here with you, and I I wonder what could come from, and don’t worry I will go to your site and I will comment on on on what you’ve run
Um, but, you know, I I I I it’s hard for Skeptics to imagine, what could be gained from engaging with you, if there seems to be no conceivable way, that we can, one, get a straight answer for, how many patients will have to report that getting worse is getting better before you starting doubting your opinion, or, uh, how many uh, uh, how many years does this have to go on before you decide that, “No, we probably just can’t produce the goods”
One of the interesting things about Doubting Thomas that I think you should definitely consider for yourself, is that at some point, when faced with the real opportunity to prove or disprove his assertions, he doubted himself
And that’s important
And that’s where you’re falling short in the analogy
I’ve laid out exactly what it would take for me to turn on a fucking dime
I have, I have made it abundantly clear what I need
Gorski has made it abundantly clear
Everybody else, Guy, and David, and Josephine Jones, uh, the Morgans, all of them have made it abundantly clear, what it would take to change our minds, and you’ve never done that
And even in this, this was an opportunity to do that
To come up with a basis for understanding, where it’s like, you know what, If we can show this, you know, if we can show a this guy, that, that, there, that his standards are not being met, then, you know, we could possibly have some sort of ongoing dialogue after this
Why wasn’t that study
Why wasn’t that , that that that, still . . again, it it doesn’t seem really to to approach the the the, main question here You know, um . . what are the standards that you have that it isn’t, what are your standards to show that it isn’t efficacious ?
Why was the Mayo
Why was the Mayo study delayed ?
Well you said you had so many years before you finish it and go in
Why, why did it take so long ?
I have something for you, okay ?
Send me that
Could you send me that study the way that it was published because um, just just send me the final study, um, to my e-mail address
Um, because, I can ask that question of those researchers, why was this study in this time, and what happened in-between
Why did it take so long for it, for it to come out
Right
Um, but it it would, perhaps, answer the question; because you’re using it as an example on the basis of which to dismiss criticism, whether or not, uh, it is the standard, and therefor you’re allowed to accept that Burzynski hasn’t published until 2016, or, um, it’s an anomaly, which is also a possibility, that most stuff comes out more quickly
I I, yeah, the other thing that David James points out is, you know, why 2016 when he’s had 36 years already ?
Treating people
You would expect the Burzynski Patient Group to be a lot bigger after 36 years, and in fact is
So, if you’re unsure about this stuff, if you’re unsure about the the time to publication, why are you defending it so hard, other than saying, “I don’t know, I really need to”
Uh about the
The reasons, the reasons for which that he’s, no, why are you defending him so hard, when you’re unsure ?
I’ve backed-up everything that
Every time that I’ve tried
and then other people
Way back
It is about
It is about as efficacious
Yeah, I’ve, and and I based that on a a a that type of thing
You, you, you can read that how you want, right ?
There
He does have the accent though
Right ?
No
Alright ?
No, but listen, like, it it it’s not, it, we we don’t understand why you defend himself so hard, when there is such a paucity of of of information out there
Um
Even if it’s true or false you, honestly though
Even if it’s true or false, in in that particular instance, you know, eh let’s just say that you’re right
Gorski gets that point completely wrong
It has no bearing on whether or not, ANP works
That’s a Red Herring
You’re just focusing on this, on this little niggly stuff, where the real question, is does it work ?
Are patients getting better at a better rate then not
or otherwise ?
We’re were talking about whether or not there’s evidence to suggest it works
The FDA, see that’s the thing
You, the FDA are are, you know, you invest them with, we’re just, we’re just circling around again
Uh um, alright
Well, this has gone on for rather a, longer than I thought it would
Um, I, uh, wanna thank you for coming on here
I wasn’t sure that you would actually do it
Um, I’m glad that you did
I’m glad that we talked
Um, I will look at your web-site, and we will, uh, we, uh, you, oh make sure that I I go to your blog and and I talk there
Um
Please do
And I will look at those
Maybe not in the next few days; I’ve got a lot going on but
Alright
Um
I don’t think he is
I don’t think he’s afraid
I just think he’s got a lot going on
He is act, a full-time surgical oncologist and researcher
He does have insane am, he has to pick and choose his battles
And if, if if he saw that we were going to ultimately be circling around our same arguments again and again; kind of like we’ve done here, um, he uh, you, he doesn’t have time for that, I don’t think
Alright
I I would ask that you to to go back over The The Other Burzynski Patient Group and take their stories seriously, because they deserve at least the same amount of consideration that the survivors do
That’s my
That’s my kids, okay Well, Thanks for much for talking
I greatly appreciate it
Alright
Take it easy
1. One “Orac” (Dr. David H. Gorski @oracknows @sciencebasedmed @gorskon #sciencebasedmedicine http://www.scienceblogs.com/Insolence http://www.sciencebasedmedicine.org)
claimed:
� “Burzynski naturally has lots of excuses for why the trial failed and tried to blame the investigators, but his complaints are not convincing.”
� When I requested that he respond to Burzynski’s comments re the study, he would NOT touch it with the proverbial ZZ Top
� “Ten-Foot Pole”
� What Critic, Cynic, or one of “The Skeptics™” is going to show more Bravery and Courage than “Orac”?
� � � � � � � � � � � � � � � � �
2. If antineoplastons do NOT work, why, after Dvorit D. SAMID learned of them from Burzynski, did all the research, clinical studies, and phase I, phase II, and phase III clinical trials really start to get underway on PHENYLACETYLGLUTAMINATE (PAG or PG)
PHENYLACETATE (PN)
and PHENYLBUTYRATE (PB)?
� � � � � � � � � � � � � � � � �
3. This individual claims to be a “cancer researcher”
�
If this individual’s “research” is so poor as a “cancer researcher,” what does that say about “research” re the “War on Cancer”?
� My review of C0nc0rdance: https://stanislawrajmundburzynski.wordpress.com/2013/03/23/my-review-of-c0nc0rdance/
� � � � � � � � � � � � � � � � �
4. This individual claims to be a “Doctor,” “oncologist,” “breast cancer specialist,” and “cancer researcher”
�
If this individual’s “research” is so poor as a “cancer researcher,” what does that say about “research” re the “War on Cancer”?
� Paging Doctor David H. Gorski, Paging Doctor David H. Gorski: There’s Mud in your Ears … Doktor Gorski?: https://stanislawrajmundburzynski.wordpress.com/2013/05/28/paging-doctor-david-h-gorski-paging-doctor-david-h-gorski-theres-mud-in-your-ears-doktor-gorski/
He did NOT even refer to the below publication by Burzynski regarding “Treatment of Recurrent Triple-Negative Breast Cancer:”
�
8/2011 – Successful Treatment of Recurrent Triple-Negative Breast Cancer with Combination of Targeted Therapies http://www.scirp.org/journal/PaperDownload.aspx?DOI=10.4236/jct.2011.23050
Journal of Cancer Therapy, 2011, 2, 372-376
doi:10.4236/jct.2011.23050 Published Online August 2011
(http://www.SciRP.org/journal/jct)
� � � � � � � � � � � � � � � � �
5. Critics, Cynics, “The Skeptics™” state that Burzynski is NOT an oncologist, but can offer no explanation as to why this is supposedly “relevant,” they cannot explain if oncologists are somehow “better” than biochemists, nor do they want to answer the question:
�
“Does Burzynski work with any oncologists, and are any of them listed on his phase II clinical trial publications”?
� http://www.burzynskiclinic.com/scientific-publications.html
Interim Reports on Clinial Trials:
�
16. 2003
�
DRUGS IN R&D
Drugs in R and D
(Drugs in Research and Development)
� BT-11
� BRAIN STEM GLIOMA
�
Phase II study of antineoplaston A10 and AS2-1 in patients with recurrent diffuse intrinsic BRAIN STEM GLIOMA:
�
a preliminary report. http://www.ncbi.nlm.nih.gov/pubmed/12718563 Burzynski, S.R.
Lewy, R.I.
Weaver, R.A.
Axler, M.L.
Janicki, T.J.
Jurida, G.F.
Paszkowiak, J.K.
Szymkowski, B.G.
Khan, M.I.
Bestak, M. http://www.ncbi.nlm.nih.gov/m/pubmed/12718563
Drugs R D. 2003;4(2):91-101
Drugs in R&D 2003;4:91-101
� � � � � � � � � � � � � � � � �
6. The British Broadcasting Corporation (BBC) Panorama program indicated that 776 Burzynski patients with brain tumours were treated in trials before 2008 http://t.co/nFpwlQg275 15.5% (120) survived more than 5 years
�
Critics, Cynics, “The Skeptics™”, what’s your survival rate?
� � � � � � � � � � � � � � � � �
7. March 29, 1996
�
Then United States Food and Drug Administration Commissioner, David A. Kessler told the American people:
�
1. We will eliminate unnecessary paperwork … that used to delay or discourage … cancer research … by non-commercial clinical investigators
�
2. The … FDA’s initiatives … will allow …the agency … to rely on smaller trials … fewer patients … if there is evidence … of partial response in clinical trials
�
I don’t want to get into any particular … agent … except let me point out … that … the information needs to be part … of clinical trials
�
3. We will accept … less information … up front –
�
4. we’re going to require further study AFTER … approval … because the science … has matured
�
5. The important – point … is that information needs to be gathered … through scientific means … through clinical – trials … and I think – that’s … that’s very important uhh very … important point
�
You can’t … just … use an agent here – or there … you have to use it … as part of a clinical trial … so we can get information … on whether the drug works
�
6. The uhh agency has … many … trials … has has approved trials … for patients … with antineoplastons
�
7. We are committed to providing expanded access … availability … for American patients for any drug … there’s reason to believe … may work
—————————————————————— https://stanislawrajmundburzynski.wordpress.com/2013/03/22/antineoplastons-has-the-fda-kept-its-promise-to-the-american-people
——————————————————————
A. What is the FDA’s definition of “unnecessary paperwork”?
�
B. What is the FDA’s definition of “smaller trials”?
�
C. What is the FDA’s definition of “fewer patients”?
�
D. What is the FDA’s definition of “evidence … of partial response“?
�
E. What is the FDA’s definition of “less information … up front”?
�
F. What is the FDA’s definition of “we’re going to require further study AFTER … approval”?
�
G. What is the FDA’s definition of “We are committed to providing expanded access … availability … for American patients for any drug … there’s reason to believe … may work”?
� https://stanislawrajmundburzynski.wordpress.com/2013/06/08/what-is-misdirection-critiquing-antineoplastons-has-the-fda-kept-its-promise-to-the-american-people/
� � � � � � � � � � � � � � � � �
8. The British Broadcasting Corporation (BBC) Panorama program indicated that 776 Burzynski patients with brain tumours were treated in trials before 2008 http://t.co/nFpwlQg275
Is that what the FDA means by:
�
rely on … fewer patients?
� � � � � � � � � � � � � � � � �
9. 4/27/2013 (37:20) Fabio stated that
Burzynski had provided the FDA with 2.5 million pages of clinical trial documents
Is that what the FDA means by:
� “unnecessary paperwork”?
�
and
� “less information … up front”?
� � � � � � � � � � � � � � � � �
10. Is this what the FDA means by: https://stanislawrajmundburzynski.wordpress.com/2013/06/08/what-is-misdirection-critiquing-antineoplastons-has-the-fda-kept-its-promise-to-the-american-people/
if there is evidence … of partial response in clinical trials?
� � � � � � � � � � � � � � � � �
11. Why was the United States Food and Drug Administration requiring that radiation be used in the Phase 3 Clinical Trial when Burzynski has shown better results with antineoplastons when radiation is NOT used?
� � � � � � � � � � � � � � � � �
12. Who wants to defend the excuse that The Lancet gave for NOT Publishing the documentation which Burzynski sent to them, which is referred to in Burzynski: Cancer is Serious Business, Part II?
� � � � � � � � � � � � � � � � �
13. Review Articles on Clinical Trials: 2. 2006 – Treatments for Astrocytic Tumors in Children: Current and Emerging Strategies. Pediatric Drugs 2006;8:167-178.
2006 Adis – Pediatr Drugs 2006; 8 (3)
� pg 174
� 2.3. Targeted Therapy
� 1652 adults
335 children
[147]
�
indicates 1,799 Burzynski patients
�
Is that what the FDA means by:
�
rely on … fewer patients?
� � � � � � � � � � � � � � � � �
13. The FDA approved phase III (3) clinical trials for Antineoplastons A10 (Atengenal) and AS2-1 (Astugenal); which means that they have shown evidence of effectiveness, yet they have NOT granted Accelerated Approval for them, even though they have done so for other treatments which had NOT yet published the final results of phase II (2) clinical trials, and which did NOT have as good Complete Response, Partial Response, Stable Disease, Minor Response, Progressive Disease, Objective Response, Progression-Free Survival, etc., rates:
At the Tu-Quack Center Oracles of Deny to Respond tree
1/30/2013
Post #52 – Orac
“You do realize that that means that the Mayo trial failed to find evidence of efficacy, just as I said, don’t you?”
“The default of a finding like that is that there is no evidence of efficacy, not that failure to have adequate numbers to show an effect means that there’s an effect there”
“If SRB wants to convince skeptics that his treatments work better than conventional therapy, let him publish the evidence in a peer-reviewed journal in a manner that it can be independently verified”
“Thus far, he has failed to do so.”
Orac, I thoroughly enjoyed; with a dismissive limp wrist, you posted:
1. “[T]he study tested a dosing regimen known to be ineffective.”
2. “[D]osages used in the study “were meant for the treatment of a single small lesion…”
3. “5 of the 6 evaluable patients had either multiple nodules or tumors larger than” said single small lesion.
4. “As the provider,” SRB “strongly suggested to the NCI that these patients receive a much higher dose, consistent with their greater tumor load.”
5. “[T]he study was closed when” SRB “insisted that the NCI either increase the dosage or inform the patients that the drug manufacturer believed that the treatment was unlikely to be effective at the dosages being used (letter to Dr M. Sznol, NCI, on 4/20/1995).”
6. “A review of the clinical data in the article … proves the validity of” SRB’s “position” per SRB
7. “Their study patients had extremely low plasma antineoplaston levels.”
8. SRB’s “phase 2 study dosage regimen produced plasma phenylacetylglutamine levels that are 35 times greater, phenylacetylisoglutamine levels 53 times greater, and phenylacetate levels 2 times greater than those reported…’”
9. “The clinical outcomes reported … based on their inadequate dosage schedule, differ dramatically from” SRB’s “phase 2 studies in which a higher dosage regimen was used.”
10. “They reported no tumor regression. In contrast, in 1 of” SRB’s “ongoing studies on protocol BT-9, 4 of 8 evaluable patients with astrocytoma had objective responses.’”
11. “The difference in outcomes is primarily due to the difference in dosage schedules,” per SRB
12. “Another factor that may have caused a lack of response in the study by … is that the duration of treatment was too brief.”
13. “Almost all the patients in their study received treatment for less than 30 days.”
14. “1 patient received only 9 days of treatment.”
15. “The current studies indicate that objective tumor responses are usually observed after 3 months of therapy.”
16. “An additional 8 months of treatment is usually needed to obtain a maximal therapeutic effect.”
17. “[A]mbiguities in the response evaluation and analysis in the article…”
a) “In 2 patients, tumor necrosis was attributed to “radionecrosis.””
b) “However, such an interpretation is clouded by the fact that antineoplaston-induced necrosis can be indistinguishable from radionecrosis.”
c) “Moreover, the analysis … could have highlighted the 2 patients with recurrent glioblastoma who survived for more than I year.”
d) “This is of interest because these patients typically have a life expectancy of 3 to 6 months.”
IMPORTANT: The live “debate”-A Film Producer, A Cancer Doctor, And Their Critics | Didymus Judas Thomas’ Hipocritical Oath Blog
April 27, 2013
Your comment is awaiting moderation.
Seriously ? Gorski ? Let’s remember that it is YOU who would NOT answer my questions, and instead inacted your “Hold the Mayo” posture re post 73
Let’s review your
“deconstructed his “evidence” in depth before” claim
1/21/2013 Orac posted THIS blog:
“Quoth Joe Mercola:
I love me some Burzynski antineoplastons
Posted by Orac on January 21, 2013″
” … In particular, a multicenter phase II trial carried out by investigators at the Mayo Clinic was a big failure, with a median survival of 5.2 months in patients with anaplastic oligoastrocytoma, anaplastic astrocytoma, or glioblastoma multiforme that had recurred after radiation therapy”
“CONCLUSION: Although we could not confirm any tumor regression in patients in this study, THE SMALL SAMPLE SIZE PRECLUDES DEFINITIVE CONCLUSIONS ABOUT TREATMENT EFFICACY.”
“You do realize that that means that the Mayo trial failed to find evidence of efficacy, just as I said, don’t you?”
“The default of a finding like that is that there is no evidence of efficacy, not that failure to have adequate numbers to show an effect means that there’s an effect there”
“If SRB wants to convince skeptics that his treatments work better than conventional therapy, let him publish the evidence in a peer-reviewed journal in a manner that it can be independently verified”
“Thus far, he has failed to do so”
I responded to Orac, quoting his reply at the beginning of my reply:
Post #73 – Didymus Judas Thomas
At the Tu-Quack Center Oracles of Deny to Respond tree
January 30, 2013
Post #52 – Orac
“You do realize that that means that the Mayo trial failed to find evidence of efficacy, just as I said, don’t you?”
“The default of a finding like that is that there is no evidence of efficacy, not that failure to have adequate numbers to show an effect means that there’s an effect there”
“If SRB wants to convince skeptics that his treatments work better than conventional therapy, let him publish the evidence in a peer-reviewed journal in a manner that it can be independently verified”
“Thus far, he has failed to do so”
Orac, I thoroughly enjoyed; with a dismissive limp wrist, you posted:
1. SAMID D , Shack S, Sherman LT. Phenylacetate: a novel nontoxic inducer of tumor cell differentiation. Cancer Res . 1992; 52:1988–1992 http://www.ncbi.nlm.nih.gov/m/pubmed/1372534/
1999 Mayo Foundation for Medical Education and Research.
Elsevier Inc.
The above four (4) references in the response to Burzynski might be relevant if all that antineoplastons consisted of was phenylacetate
Phenylacetylglutaminate (PAG or PG) and Phenylacetate (PN) are metabolites of Phenylbutyrate (PB) and are constituents of antineoplaston AS2-1
Antineoplastons AS2-1 and AS2-5 are DERIVED FROM A10
AS2-1=4:1 mixture of PHENYLACETIC ACID (PA) and Phenylacetylglutamine (PAG or PG)
National Cancer Institute (NCI) at the National Institutes of Health (NIH) Antineoplastons
General Information: http://www.cancer.gov/cancertopics/pdq/cam/antineoplastons/healthprofessional/page2 This is “what would happen” if “Orac” did have the “Bravery,” “Courage,” “Gumption,” “Intestinal Fortitude,” “Testicular Fortitude,” to address this issue: