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
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?”
—————————————————————– “Orac” and David H. Gorski, M.D., Ph.D., FACS,
collectively, “GOrac” a/k/a GorskGeek thinks that signs of “Getting Worse is Getting Better” [1]😛
That’s right ! 🙂
I almost couldn’t believe my eyes, but GorskGeek seems to have come around to Burzynski’s way of thinking (according to “Dr.” Bob🙂)
GorskGeek describes it thusly:
—————————————————————– “Conventional cancer treatment can also cause tumors to swell temporarily, due to inflammation”
“A patient who isn’t familiar with this phenomenon may assume her tumor is growing”
“When that swelling subsides, patients may assume it’s because of Burzynski, Adamson says”
“In reality, the tumor was just returning to its previous size”
“Pseudoprogression can be a real confounder in assessing the response of brain tumors to therapy, being observed up to 28% of the time”
—————————————————————–
Here’s how GorskGeek’s“brother” in blatherskite; I’m NOT a doctor, 😷 (but I play one on The Other Burzynski Patient Group), Robert J. (don’t call me “Bobby”) “Bob” Blaskiewicz Blatherskitewicz, describes it [2] 😝:
—————————————————————– 8/27/2012, Monday[2]
“On the 27th, we hear:”
“Firstly, Amelia hasn’t quite been herself unfortunately”
“She has been very reluctant to walk, a lot more tired, slow and pretty lethargic”
“She was sick on Saturday night also”(8/25/2012)
“We are reasonably confident we have probably gone too far with the steroid reduction so we have actually increased these slightly again today”
“We decided we would rather have a happy and more alert Amelia than one who doesn’t want to do too much – so we made this decision today in coordination with the Burzynski clinic“
“We’ll see how she does”
“There is a small chance it is the tumour growing, but much more likely given the scans we have that this is due to swelling of the tumour caused by the treatment”
“Time will tell. […]”
“The symptoms we are seeing right now are a direct result of the tumour, hopefully due to it swelling, and the steroids will fix this”
“They are also what we would see if it has grown”
—————————————————————–
(Below comments by: I’m NOT a doctor, 😷 (but I play one on The Other Burzynski Patient Group), Bob Blaskiewicz 😜)
And here’s another example of something that is…desperately, desperately wrong at the Clinic 😦
The patient is being told that the tumor is swelling because of the treatment 😳
How is it that only at the Burzynski Clinic that getting worse is indistinguishable from getting better?😡
Second point:
this is a tumor on the brainstem
If a possible side effect were swelling of the thing pressing against the brainstem, you’d expect that to be on the informed consent form, right? 😐
The type of thing that would be among the “serious side effects,” right? 😮
—————————————————————–
So, to recap 😄:
—————————————————————— David H. Gorski
• ( “Getting Worse is Getting Better”) 😃
•“Conventional cancer treatment can also cause tumors to swell temporarily, due to inflammation“
—————————————————————– Amelia Saunders
•“ . . . but much more likely given the scans we have that this is due to swelling of the tumour caused by the treatment”
•“The symptoms we are seeing right now are a direct result of the tumour, hopefully due to it swelling . . . ”
—————————————————————– “Dr.” Bob Blaskiewicz (I’m NOT a doctor, 😷 but I play one on The Other Burzynski Patient Group)
• The patient is being told that the tumor is swelling because of the treatment
• How is it that only at the Burzynski Clinic that getting worse is indistinguishable from getting better?
• If a possible side effect were swelling of the thing pressing against the brainstem, you’d expect that to be on the informed consent form, right? “O”
——————————————————————
The problem with this is:
In support of this “phenomenon”, the article provides a link to a Canadian web-site [3] 😶
——————————————————————
The site 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 site cites 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] 😁
Get your act together, aye, CAN-A-DUH! 😇
——————————————————————
☺
😉
—————————————————————–
I gave Liz Szabo and USA TODAY the chance to act like a Spike Lee joint and “Do the Right Thing”, the same day their article came out [1]
I gave them the opportunity to prove that their article was a legitimate piece of journalism with some semblance of integrity, and NOT just akin to one of “The Skeptics™ phoned-in “rubber-stamped” yellow journalism hit pieces
Instead, it seems that Liz Szabo and / or USA TODAY decided to act as if they had rolled a Spike Lee joint
I sent an e-mail with 2 editorial corrections, and only one (correcting Lisa Merritt’s comment link from taking the reader to the 1999 Mayo Clinic report instead of to her comments), was corrected [2]
The 2nd correction which they #FAILED to do, earns them well deserved INSOLENCE
——————————————————————
The articleclaims:
—————————————————————— “Burzynski, 70, calls his drugs “antineoplastons” and says he has given them to more than 8,000 patients since 1977.”
——————————————————————
——————————————————————
However, if you select the “8,000 patients” link, the referenced page does NOT indicate that at all [2]
——————————————————————
—————————————————————— It advises:
—————————————————————— “That same year, Dr. Burzynski founded his clinic in Houston where he’s since treated over 8,000 patients.”[3]
——————————————————————
—————————————————————— Nowhere does it indicate that he “treated 8,000 patients” with antineoplastons
——————————————————————
——————————————————————
The question that Liz Szabo and USA TODAY should answer, is:
1. Who is your “fact-checker”, and 2. are they smarter than a 5th grader ?
——————————————————————
In fact, Burzynski’s 2002 Securities and Exchange Commission (SEC) filing advises:
” … in 1997, his medical practice was expanded to include traditional cancer treatment options such as chemotherapy, gene targeted therapy, immunotherapy and hormonal therapy in response to FDA requirements that cancer patients utilize more traditional cancer treatment options in order to be eligible to participate in the Company’s Antineoplaston clinical trials”[4]
——————————————————————
The article continues:
—————————————————————— “Individual success stories can be misleading, said Arthur Caplan, a professor and head of the division of bioethics at NYU Langone Medical Center”
——————————————————————
The question Arthur Caplan should be asking is:
Why has the United States Food and Drug Administration required Burzynski’s clinical trial patients to fail conventional therapies; such as surgery, chemotherapy, and radiation, BEFORE they are allowed to be treated with antineoplaston therapy ?
If the F.D.A. did NOT impose these restrictions upon Burzynski’s clinical trials, then the question Arthur Caplan raises would be moot
——————————————————————
The article quotes Dr. Jan Buckner as saying:
—————————————————————— “When I hear a story that is way out of the norm, the first question I ask is,
‘OK, is the diagnosis even correct?‘ ”
“Buckner said”
“If the diagnosis wasn’t right to start with, it doesn’t matter what the treatment was.”
“Brain tumors are notoriously difficult to diagnose, Buckner says”
“When dealing with rare brain cancer, doctors may disagree about how to interpret imaging results up to 40% of the time”
——————————————————————
I wonder if Dr. Jan Buckner would agree with David Gorski; who is a BREAST cancer oncology specialist, and NOT a BRAIN cancer oncology specialist, who has the presumptiveness to speculate that 3 different medical opinions could have misdiagnosed Tori Moreno in August 1998; who was diagnosed with a very large tumor, about 3 inches in the largest diameter and located in the brain stem, which was too risky for surgery, and about which her parents were told by ALL 3, that Tori’s brain cancer was fatal and, she would die in a few days or at the most, 2-6 weeks, and that there was nothing that could be done, and was finally put on Burzynski’s antineoplaston therapy in October, when she was about 3 ½ months old, and in such condition that they were afraid that she might die at any time, David H. Gorski, M.D., Ph.D., FACS; who claims, “I do know cancer science”, has the audacity, because of his “book learnin'” has the temerity to postulate his “science-based medicine theory” that Miller’s Children at Long Beach Memorial misdiagnosed Tori Moreno’s inoperable stage 4 BSG
David Gorski has the gall to profer that City of Hope misdiagnosed Tori Moreno’s inoperable stage 4 brain stem glioma
David Gorski has the chutzpah to pontificate that Dr. Fred Epstein in New York misdiagnosed Tori Moreno’s inoperable stage IV brainstem glioma [5]
——————————————————————
The article then quotes Peter Adamson, chair of the Children’s Oncology Group:
—————————————————————— “But these therapies may have delayed benefits, taking weeks or months to shrink a tumor“
“So patients treated by Burzynski may credit him for their progress, just because he was the last doctor to treat them, says Peter Adamson, chair of the Children’s Oncology Group, an NCI-supported research network that conducts clinical trials in pediatric cancer“
“Conventional cancer treatment can also cause tumors to swell temporarily, due to inflammation“
“A patient who isn’t familiar with this phenomenon may assume her tumor is growing“
“When that swelling subsides, patients may assume it’s because of Burzynski, Adamson says”
——————————————————————
This is laughable
In support of this “phenomenon”, the article provides a link to a Canadian web-site [6]
The site 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 site cites 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 [7]
Get your act together, aye, Canada!
——————————————————————
The articlerants and raves on and on about FDA inspection reports from as far back as 1998, but at least they did quote Richard A. Jaffe:
“The FDA has not yet issued final conclusions”
——————————————————————
The article posts this ridiculous claim:
—————————————————————— “Yet the National Cancer Institute says there is no evidence that Burzynski has cured a single patient, or even helped one live longer“
——————————————————————
That’s NOT what this seems to suggest [8]
——————————————————————
Then the article quotes pediatric oncologist Peter Adamson, a professor of pediatrics and pharmacology at Children’s Hospital of Philadelphia, in what will no doubt soon be known as a “classic”:
—————————————————————— “He’s a snake oil salesman,” says pediatric oncologist Peter Adamson, a professor of pediatrics and pharmacology at Children’s Hospital of Philadelphia”
——————————————————————
All I’d like to know is, which rock did this clown crawl out from under ?
Dr. Adamson, please advise which “snake oil” has been granted Orphan Drug Designation (“ODD”) from the United States Food and Drug Administration [9], and which “snake oil” has been approved for, and used in, phase III clinical trials ? [10]
—————————————————————— Q: Is it, it the phase 2 trial is finished ?
A:“Mhmm”
Q: but they’re still accepting people ?
A:“Yeah”
Q: on more like a special ?
A:“Special basis, and, um, sometimes compassionate grounds“
A:“(compassion exception)”
A:“Uh, exceptions“
Q: That’s normal ?
A:“Yes” “So”
A:“(Yes I guess it is a funding issue ?)”
Q: Right
A:“(Like FDA, during the 2nd phase of clinical trials they found the data to be, real, real one, and they gave him the ok to go for 3rd phase of clinical trials, but just to go through this process you would probably need $100,000)”
——————————————————————
——————————————————————
Oh, wait !!
Dr. Adamson, when you say “snake oil”, I take it you are referring to the low-dose chemotherapy that Burzynski uses ?
Dr. Adamson, do you know what a “hack” is ?
——————————————————————
In regards to the Merritt’s, the article has:
—————————————————————— “The couple say that Burzynski misled them about the type of treatment that would be offered, as well as the cost”
My questions about the Merritt’s are:
1. Where is their complaint to the Texas Medical Board ?
2. Where is their lawsuit ? Couldn’t they find an attorney to take their case pro bono ?
——————————————————————
The article continues:
—————————————————————— “Yet even Jaffe has acknowledged that the trial — now in its 17th year — was more about politics than science”
“In his 2008 memoirs, Galileo’s Lawyer, Jaffe called it “a joke.””
“”It was all an artifice, a vehicle we and the FDA created to legally give the patients Burzynski’s treatment,” Jaffe said“
——————————————————————
What Liz Szabo and her friends at USA TODAY fail to let the readers know, is that this only applied to one trial:
—————————————————————— Burzynski’s lawyer is obviously referring to the CAN-1 clinical trial mentioned in Burzynski’s 11/25/1997 Securities and Exchange Commission (SEC) filing [11]
—————————————————————— One trial that is retrospective is CAN-1 Clinical Trial
—————————————————————— CAN-1 PHASE II STUDY OF ANTINEOPLASTONS A10 AND AS2-1 IN
PATIENTS WITH REFRACTORY MALIGNANCIES
133 patients
—————————————————————— Clinical trial of patients treated by Dr. Burzynski through 2/23/1996
—————————————————————— FDA has indicated it will not accept data generated by this trial since it was not a wholly prospective one
——————————————————————
The article continues in the same vein:
——————————————————————
“In an interview, Burzynski said developing new drugs is complex and takes time”
“Yet the FDA has approved 108 cancer drugs since Burzynski began his trial”
—————————————————————— Ms. Szabo and “pals” conveniently “forgets” to educate their audience that Burzynski was using Fleming’s One-sample multiple testing procedure for phase II clinical trials [13], which requires that if the 1st 20 patients meet certain criteria, 20 additional patients are added [14]
—————————————————————— “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“[15]
——————————————————————
Then Fran Visco, president of the National Breast Cancer Coalition makes an outlandish statement, which is quoted in the article:
—————————————————————— “Fran Visco, president of the National Breast Cancer Coalition, describes the FDA’s tolerance of Burzynski as “outrageous.””
“They have put people at risk for a long time,” says Visco, an attorney and breast cancer survivor”
“That’s completely unacceptable”
“How can anyone look at these facts and believe that there is a real clinical trial going on … rather than just using the FDA and the clinical trial system to make money?”
——————————————————————
I have a suggestion for Ms. Visco
Take your hypocrisy and ask the American Cancer Society if they are still engaged in this kind of activity:
1.AMERICAN CANCER SOCIETY: More Interested In Accumulating Wealth Than Saving Lives [15]
2.National Cancer Institute and American Cancer Society: Criminal Indifference to Cancer Prevention and Conflicts of Interest [16]
——————————————————————
Then, ask the American Cancer Society, why is it that 10 years ago, estimated breast cancer deaths were expected to be 39,800 (15%), and this year it was 39,620 (14%), which is ONLY 180 LESS than 10 years ago ?
—————————————————————— Estimated Breast Cancer Deaths (Women)-USA
—————————————————————— 2013☝39,620 (14%)
2012👇39,510 (14%)
2011👇39,520 (15%)
2010👇39,840 (15%)
2009👇40,170 (15%) 2008☝40,480 (15%)
2007👇40,460 (15%) 2006☝40,970 (15%)
2005👇40,410 (15%) 2004☝40,110 (15%)
2003☝39,800 (15%)
2002 – 39,600 (15%)
—————————————————————– American Cancer Society Cancer Facts & Figures (2002-2013)
—————————————————————–
And then ask the American Cancer Society, why is it that 10 years ago, the estimated NEW breast cancer cases were expected to be 211,300 (32%), and this year it was 232,340 (29%), which is 21,340 MORE than it was 10 years ago ?
—————————————————————— Estimated New Breast Cancer (Women) – USA
—————————————————————— 2013☝232,340 (29%)
2012👇226,870 (29%) 2011☝238,480 (30%)
2010☝207,090 (28%)
2009☝192,370 (27%)
2008☝182,460 (26%)
2007👇178,480 (26%) 2006☝212,920 (31%)
2005👇211,240 (32%) 2004☝215,900 (32%)
2003☝211,300 (32%)
2002_-_203,500 (31%)
—————————————————————– American Cancer Society Cancer Facts & Figures (2002-2013)
——————————————————————
And after that, ask Susan G. Komen how much is spent on legal action to protect her brand, compared to how much is spent on breast cancer research and prevention ?
—————————————————————— Visco, the breast cancer advocate
“I do NOT know why it took YOU so long.”
——————————————————————
The article continues with:
—————————————————————— “Yet hypernatremia is one of antineoplastons’ most common side effects, known to doctors for two decades”
——————————————————————
Yet, “The Skeptics™” refuse to discuss:
—————————————————————— 2/13/2013 – The frequency, cost, and clinical outcomes of hypernatremia in patients hospitalized to a comprehensive cancer center
Over 3 month period in 2006 re 3,446 patients, most of the hypernatremia (90 %) was acquired during hospital stay [19]
Division of Internal Medicine, UT MD Anderson Cancer Center, Houston, TX, USA
Department of General Internal Medicine, University of Texas MD Anderson Cancer Center
Division of Endocrinology, Mayo Clinic
—————————————————————— 9/1999 – The changing pattern of hypernatremia in hospitalized children [20]
Department of Pediatrics, Texas Children’s Hospital, Baylor College of Medicine, Houston, Texas, USA
——————————————————————
So, after all that, my question for USA TODAY is, does Liz Szabo, Michael Stravato, Jerry Mosemak or Robert Hanashiro have a journalism degree ?
Because if any of them do, the institution they obtained it from most be so proud of this piece of “fish wrap” you produced
Thank you, USA TODAY, for censoring my 18 comments
I guess you must be (“intellectual”) cowards
At least Forbes had the GRAPEFRUITS to post some of my comments
—————————————————————— You’ve just been served, INSOLENTLY
—————————————————————— USA TODAY, GONE TOMORROW
——————————————————————
====================================== 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
======================================
I will be doing some data clean-up and adding additional video transcripts
——————————————————————
What stood out to me in the first and lastvideos is that you could hear both sirens and birds
Unlike “The Skeptics™” (sirens) #whining, the birds were celebrating Hannah #winning
——————————————————————
Just as I did with the case of Burzynski patient Laura Hymas, so will I do with her friend, Hannah Bradley
Yes, unlike “Orac” I will let Hannah speak for herself instead of adding any bias as “Dr. Check my Facts” Hack does
—————————————————————— Team Hannah Blog
6/6/2013 – Posted by Hannah
(6:14)
Okay
Hello everyone
Hi
It’s uh Thursday the 6th of June
Yes
(laugh) And uh we’ve got some really good news
We’ve kind of been holding back a little but
we just wanted to be certain
so what were you going to say
Uh, I am finally off treatment
Finally off treatment which is great so as far as Dr. Burzynski is concerned, the treatment is now finished
Hannah is free
Free of the bag
Free of
Yes
Yes
How’s that feel
Yeah, it feels really kind of strange to be honest
Well you want to go back on it again
No
No
But I
I miss the bag, because I miss carrying around ohhh
Now you’re just being a little bit stupid
Um, but the great news is today, we went to go and see Hannah’s surgeon
Yes
Oncologist
A another surgeon another doctor um
Yeah
And that was a bit strange because the last time that we saw surgeon he gave us
it was probably one of the worst days of our life
Yep
He gave us the results of
Your biopsy
Yep
Which was a grade 3 tumor uh I can remember that like that was yesterday
I don’t really remember
Well but I do
It was amazing uh seeing him today because he’s just basically just agreed with everything that uh that’s been said in America that Hannah’s doing really really well she as far as she’s concerned you don’t have to have any scan for another 6 months
No
Uh so you know really kind of cancer free and
Yep
Now, you know, it is incredible
It’s a bit of a miracle and
it both hasn’t hit home
really
How much
Yeah
How much is
Well we can start our life
We can start our lives, again
Again (laugh)
And um we just want to say
a massive thank you
the list is just
this isn’t the end for us
I’m sure we
boring you
(laughing)
had a very long day
We had to wait an hour and a half (laugh)
(laugh) Sorry I couldn’t help
Calm down
The the list of people that we have to thank
Need
Need to thank is so long, and obviously way up at the top of that list has to be uh Dr. Burzynski and all of the people at the Burzynski Clinic who have been just amazing, you know
Just so supportive um and I suppose really without that treatment I don’t
I don’t think
I don’t
No
I don’t think
You don’t think you’d what ?
It’s not worth thinking about
Yeah, it’s not worth thinking about
But um we have to thank every single person that contributed and helped us and supported us along the way
Everyone that helped us raise money
Um
to thank
Here we go
Who else do we need to thank
I think
Come back up
Come on
(laugh)
We have to thank uh
like I said it’s been a long day today
Uh we have to thank Jamie Lowe
Yes
We have to thank Lindley Gooden
Who else do we have to thank ?
Uh all the people that were in Team Hannah
Yeah
All of your friends
My parents
Your parents
Mhmm
Um just everyone that’s been watching these blogs
We really, really couldn’t have done it without you
And um
We are really, really thankful
You don’t want to go do you ?
Hannah and I were thinking about doing our own comedy show because a lot of people
comments like we’re so funny
Yeah
And who’s the funniest
Uh oh you
Yeah you
Me
Me
Me
Um
So, I don’t know what else to say really apart from, you know, this is really a bit of a fairy tale for us
We know how fortunate
we are and we know how
people
who we met along the way
who weren’t
haven’t been as fortunate as us
So we uh
So, are you alright down there ?
we’re talking about something serious
Very
Yeah, we know a lot of people who haven’t been as fortunate
As fortunate as we have people are forever in our hearts
You know, um, we know how lucky we are and um
We’re going to make the most of our lives the most of our lives together
Um, yeah
We really do think that
No don’t
You know, there was a time
Many, many times where I really didn’t think that Hannah would be here but, you know, we’re talking 2 1/2 years ago that she was diagnosed and she’s doing better than ever even though she is yawning
(laugh)
Um
I don’t think there’s any words that really put into a sense of how so lucky we think we are, and I really think it’s how our legacy to live with that and try and inspire other people as much as we can as well
Ok
So, we’re not going to get go anywhere we’re still we’ll still let you know from time to time how we’re getting on
Uh um I also think we need to give a massive shout out to Ben and Laura Hymas as well who, who really, we went to see them the week before we went to, out to America, and it was there, was a, was a bit of a shock
Really
Realizing what we were about to take on but um she’s
I’m very sorry
She’s someone else who’s done well and we want to give a big shout out to them because we know that they’ve got their lives ahead of them as well as we do too
So, I think without any further ado we’ll give your famous wave
(wave)
It’s not really a wave, is it
Thank you very much everyone
Thank you
Big hug
Wanna hug ?
C’mon
C’mon hug us [10]
====================================== London[1]
4/2010 – first met Hannah and we fell in love and since then our relationship has gone from strength to strength [3]
Hannah (28) has great personality and fantastic sense of humour [3]
10/5/2012 – from Elstead[12]
4/4/2013 – Hannah Bradley (28)[11]
Hannah Bradley from London, UK [15]
====================================== MOOD ======================================
Looking back now, was quite naive [1]
2/2011 – world took dramatic turn [11]
Hannah Bradley from London, UK [15]
To my complete horror [11]
whole world was turned upside down [11]
confused [11]
scared of all the unanswered questions that lay before me
why was this happening to ME? [11]
What did the future hold? [11]
Will I be okay? [11]
absolutely terrified as realised something seriously wrong [15]
Everybody else went into panic, but shock calmed [15]
Inside, scared, could see how frightened Pete was [15]
wasn’t easy decision but really wasn’t another choice [15]
Fear pulsed through me as was wheeled to theatre for operation [15]
4/2011 – thought once surgery over, tumour would be gone [1]
“Hello,” I croaked [15]
“Have I still got all my hair?” [15]
beamed as Pete nodded [15]
long blonde locks were pride and joy, and surgeons managed to operate without having to shave any [15]
Waiting for results was one of most harrowing periods for me and my partner [11]
had to wait for results of biopsy for few weeks and remained positive [3]
while trying to remain positive throughout [11]
tried to keep busy so didn’t dwell on what doctors would say [15]
it was hard [15]
sensed before they even spoke [15]
faces were so serious it had to be bad news [15]
Obviously medical professionals have to be detached when deliver news, but we completely broke down [15]
tried to bite back sobs so could hear what they were saying [15]
blinked for moment, realising meant me [15]
left hospital, in daze [15]
went to sit in park for 2 or 3 hours, working out how to tell everyone [15]
rang dad, feeling ashamed he had to deal with news [15]
didn’t want to upset him [15]
Pete and I rang close friends and family and became easier each time [15]
got chain going to spread news so didn’t have to ring everybody, which was relief [15]
gave me space to come to terms with diagnosis [15]
Once able to get head around it, felt detached from it: [15]
needed to get through next stage now [15]
needed 6 weeks of radiotherapy, did that, thinking this would make me better [1]
Hannah’s bravery and resolve once again rose up as shortly after this she started 6 week course of radiotherapy[3]
news was not good and world was rocked once more as results showed Grade III tumour[11]
whole world suddenly fell apart again and that very moment I didn’t know how to go on [11]
knew had to carry on and from somewhere I didn’t know existed within me, found some bravery and started to have next course of treatment, 6-week course of radiotherapy[11]
hope you will understand this was REALLY difficult for me as I loved my hair and without it felt horrible and ugly [11]
coped well at first, until hair came out in clumps [15]
warned could be few patches of fall, but lost it all [15]
wore headscarves but mourned my hair [15]
work in skincare sales and used to having to look my best [15]
know it was vain, but hair was part of my femininity [15]
missed it [15]
awful but kept going, knowing had to [15]
Seeking alternatives [15]
full of hope [15]
know it’s long fight ahead but feel everyone is behind me and
get so much from that [15]
have a mantra, which like to think I made up but think I read somewhere: [15]
‘You never know how strong you are until being strong is the only choice you have.’ [15]
exactly how I feel [15]
there was some hope [12]
was truly an incredible time and once again I was filled with hope as so many people came to my aid to support me by raising money and donating what they had [11]
still so thankful for all that support [1]
absolutely overjoyed [1]
wouldn’t turn my back on conventional medicine, but would advise anyone in situation like mine to look into other options – there could always be another way [1]
“If this whole thing has taught me anything, it’s that.” [1]
Thankfully along with other treatment, strategy has worked for me and I’m now trying to help others who are fighting against this horrible disease[11]
====================================== HEALTH ======================================
was salesperson when diagnosed with cancer[1]
ate on the run [1]
smoked[1]
had no real symptoms or warning signs[1]
2/2011 – out of the blue, Hannah had major seizure in middle of the night [3]
2/2011 – one night Hannah’s life changed drastically without any prior health concerns suddenly had major seizure[12]
2/2011 – had grand seizure while asleep [1]
2/2011 – major seizure in middle of night [11]
arms up in the air, body shaking [1]
2/2011 – lost consciousness and was rushed to hospital [3 + 11]
woke in hospital, had no idea what had happened, tests revealed brain tumour size of golf ball in frontal lobe [15]
didn’t know anything wrong before had massive seizure in sleep [15]
boyfriend thought was having nightmare at first, but when couldn’t wake me, realised was unconscious and called ambulance [15]
came round in hospital few days later and didn’t remember anything [15]
2/2011 – 4/2011 – don’t remember much about 2 months that followed apart from seeing many doctors, having constant headaches and a # of seizures[11]
had constant headaches and number of seizures[3]
Eventually CT scan showed brain tumour, turned out to be very aggressive, anaplastic astrocytoma[1]
week after CAT and MRI scans told had brain tumour size of golf ball [15]
in frontal lobe and probably growing there for years [15]
doctor gave 3 options: [15]
leave it and see what happened
have biopsy to discover what type of tumour it was and how aggressive
go for surgery to try to remove as much as possible [15]
diagnosed with very serious brain tumour[3]
diagnosed with very aggressive brain tumour[11-12]
2/2011 – 4/2011 – have no memories of that time, from the night of seizure to coming around from 8-hour operation to remove tumour 2 months later[1]
had about 4 more seizures – including one 2 nights before surgery last April – after discharged because tumour growing and putting so much pressure on brain [15]
Pain throbbed through inside of skull as peeled eyes open [15]
Groggy, focused and saw Pete smiling down at me [15]
was in hospital 5 days before going home to rest and getting biopsy results [15]
2 weeks later, went back to see consultant and specialist nurse [15]
news was not good and our world was rocked once more as results showed Grade III tumour[3]
tumour was cancerous and had scary name – anaplastic astrocytoma [15]
4 grades of brain tumours with 4th being worst [15]
Mine grade 3 [15]
statistics quoted said person with grade-3 tumour lives around 5 years [15]
life expectancy for people with tumours like this was 18 months[1]
2 weeks into treatment was hit by wave of tiredness [15]
so shattered had to go to bed for week [15]
went well for 1st few weeks but followed by hair falling out and bouts of tiredness and lethargy[3]
lost hair
started having seizures and didn’t know how long she had to live [12]
was still having seizures and lost independence with losing driving licence [11]
On top of all of this, dealing with losing driving licence as had number of seizures and now has epilepsy[3]
At end of July, had another MRI scan, revealed still residue left from tumour [15]
6 weeks after radiotherapy finished, had another MRI to see what was going on with tumour, Once again more bad news, as there were still remnants of aggressive tumour[3]
Although it was hard I remained hopeful that 6 weeks after radiotherapy would help and I could go on to live a normal life but again results of next MRI were not good [11]
There were still remnants of aggressive tumour[11]
At this point treatment options where very limited and life expectancy was not very long [11]
was told only options available on National Health Service were to operate or have radiotherapy again [15]
Chemotherapy also mentioned but not strong enough for that [15]
doctors said were really uncertain of expected life span if didn’t do anything and since treatment options in UK so limited, we want to try something else [15]
didn’t know 100% whether would work, but had to believe in something; wanted to be positive [1]
Just 8 months after starting treatment had some incredible news [12]
latest scans show she is cancer free[12]
desire to beat this disease led me to make number other lifestyle changes [11]
One of biggest changes has been dietary; specifically cutting out most sugars from my diet [11]
involved learning how to cook, which in itself was huge challenge because I hated cooking with a passion [11]
Over time I started experimenting with different foods and became more and more adventurous and dare I say it, I even started to enjoy coming up with new healthy recipes [11]
quickly learned that exclusive food of cancer is sugar, so quickly embraced this and cut out almost completely starchy carbohydrates and refined sugars by incorporating sugar free/starch free food plan [11]
idea being that diet would feed my body, mind and starve cancer into submission [11]
also learnt this type of diet is good for blood sugar regulation, body composition and is consistent with the way that our ancestors ate thousands of years ago [11]
After months of experimentation and with help of couple of great cooks, have learned to make delicious and nutritious healthy meals and this is why I decided to write my own book, The Team Hannah Cookbook[11]
It’s my contribution to helping and inspiring others to eat a better diet [11]
I would hope you can enjoy these recipes and make them part of your diet [11]
This book will show you how easy it is uto cut out the carbs and still eat “normally.” [11]
I now believe that dieting and counting calories doesn’t work [11]
Low carb is the way forward [11]
You will find in my book great low carbohydrate recipes for – Breakfasts, Breads & Pastries, Starters, Salads, Mains, Desserts, Treats [11]
====================================== TREATMENT ====================================== 2/2011 – partner, Pete, called ambulance, was rushed to hospital, unconscious [1]
decided to have operation, hopeful would get rid of it [15]
in hospital 2 weeks following 1st seizure and put on strong medication to stop from having fits [15]
kept awake 2 1/2 hours of 6-hour surgery – medical team wanted to make sure weren’t damaging any part of brain, where tumour was, relating to speech and language [15]
made list of what to talk about with speech therapist during operation, such as meeting Pete at conference in Croatia year before; favourite American TV series, Friends, niece who’d been staying with family week before seizure [15]
remember having to touch fingers with thumbs to check movement still there, hand or my leg would involuntarily move when surgeon touched particular part of brain and asking anaesthetist to scratch itch on nose [15]
“It’s going fine, we’re putting you back to sleep now,” voice said and everything went black [15]
4/2011 – 8-hour operation to remove tumour[1]
4/1/2011 – decided to have surgery underwent 6 1/2 hour operation[3]
4/1/2011 – surgery and underwent grueling 6 1/2 hour operation[11]
To my relief
results of operation were fairly successful and surgeon managed to remove uhmost of tumour[11]
diagnosed with Anaplastic Astrocytoma brain tumour and over next few months endured 6-hour operation and 6 weeks of radiotherapy[12]
started radiotherapy 8 weeks after surgery [15]
full on – 6 weeks of treatment, Monday to Friday [15]
needed 6 weeks of radiotherapy, did that, thinking this would make me better [1]
radiotherapy went well for 1st few weeks but fears were confirmed when hair started to fall out [11]
was gruelling – hair fell out, had quite a few seizures – then, at end, scan showed still had remnants of very aggressive tumour[1]
Pete started researching alternative treatments from beginning and was Dr Stanislaw Burzynski, biochemist and physician in US, who seemed right choice for me [15]
found pioneering treatment in America which could give her a chance [12]
One name kept cropping up [1]
Dr Burzynski[1]
treatment is controversial – claims to have identified peptides called antineoplastons, which act as molecular switch to turn off cancer cells without harming normal cells [15]
After reading everything we could, decided to try it [15]
At his clinic in Houston he’s developed a treatment using anti-cancer compounds he discovered and now manufactures – and is treating aggressive tumours, especially ones in the brain [1]
controversial [1]
medical community claims unscientific and unproven [1]
oncologist didn’t want me to go – he wanted to monitor tumour and maybe give more radiotherapy in future [1]
that was like containing it, not getting rid of it, and treatment hadn’t worked so far [1]
Dr Burzynski seemed to be only hope of getting rid of cancer for good [1]
In order to get it needed to raise £150,000 [12]
treatment wasn’t cheap (about £200,000) [1]
treatment very costly, and even using all savings didn’t have nearly enough [15]
£200,000 (Dh1.16 million) needed to go to US, plus ongoing shipping of drugs from States and private monthly scans will need for 12-18 months, was out of reach [15]
Family and friends offered to help, soon there was Team Hannah website [15]
Within few weeks had £35,000, enough to go to US for consultation and start treatment [15]
didn’t know 100% whether would work, but had to believe in something; wanted to be positive [1]
Treatment available in America[12]
Luckily was able to take part in phase 2 clinical trial in Texas, USA [11]
treatment isn’t available via NHS so had to raise considerable amount of money [11]
12/2011 – flew with Pete to Burzynski Clinic[1]
—————————————————————— 12/10/2011 – Saturday – video blog
leaving tomorrow morning
—————————————————————— 12/11/2011 – Day 1 – Sunday
flew to USA massive headache
thought was going to faint
—————————————————————— 12/12/2011 – Day 2 – Monday Burzynski Clinic
temp check
vision test
meeting: Dr. Yi oncologist / Dr. Greg Burzynski
(Dr. Rowkowski)
—————————————————————— 12/13/2011 – Day 3 – Tuesday Burzynski Clinic
inject sugar syrup PET scan
MRI scan review
?’s memory / spelling jumbled
fill out form Valium
(as much local anesthetic as could give her w/o knocking her out) catheter – Hickman line
(painful / really painful)
—————————————————————— 12/14/2011 – Day 4 – Wednesday Burzynski Clinic
(feeling wrecked / absolutely wrecked)
start treatment 6 doses of antineoplaston a day 4 hours apart almost 24 hours continuously
(had chest x-ray)
(Dr. Barbera – talk pain medication)
lessons: clamps / hoses / pump
—————————————————————— 12/15/2011 – Day 5 – Thursday Burzynski Clinic
(Day 2 of treatment)
lessons: change pump
—————————————————————— 12/20/2011 – Day 10 – Tuesday Burzynski Clinic Dr. Yi / Dr. SRB enhancing – asked to stay month – next MRI to be done
—————————————————————— 12/22/2011 – Day 12 – Thursday Dr. Hilary Jones on Daybreak
(Pete’s colleague)
—————————————————————— 12/24/2011 – Day 14 – Saturday
fever
bad breathing
shivering all night
—————————————————————— 12/25/2011 – Day 15 – Sunday Burzynski Clinic
flu symptoms
breathing
headache
uncontrollable chills couldn’t stop
Monica off ANP
absolutely exhausted
in bed
little bit of swelling back of head
—————————————————————— 12/27/2011 – Day 17 – Tuesday
back on ANP
temp 102
called Burzynski Clinic off ANP
temp down / up
—————————————————————— 12/28/2011 – Day 18 – Wednesday Burzynski Clinic on ANP much smaller dose
exhausted
close to breaking / cracking
—————————————————————— 12/29/2011 – Day 19 – Thursday
hospital “I’m at my wits end” “I don’t feel I can take anymore”
—————————————————————— 12/30/2011 – Day 20 – Friday
last week up & down
off on off on off
fever
chills
shaking
viral infection
bacterial infection
had to go to E.R.
surreal
—————————————————————— 12/31/2011 – Day 21 – Saturday
fever in middle of night
temp 102 Dr. SRB thinks flu-like symptoms or tumor actually breaking down ->
——————————————————————
1/2012 – started treatment[11]
—————————————————————— 1/1/2012 – Day 22 – Sunday Burzynski Clinic
feel drunky
prob w pump – not closing
felt like completely drunk
double vision
Nurse said anti-seizure drug she hadn’t taken before
bit shaky
Gary – directions re pump equip
—————————————————————— 1/17/2012 – Day 38 – Tuesday Burzynski Clinic
temp 101.8
throat infection
If 102 take off ANP
BC 3x – blood – supplies
antibiotics 1 day
antibiotics 2 day – over 102 last night
fever
antibiotics been on 3 days off ANP
disappointed
pointless
—————————————————————— 1/20/2012 – Day 41 – Friday
fever
104 (103.9)
Friday night
—————————————————————— 1/21/2012 – Day 42 – Saturday Burzynski Clinic
temp up to 104
Dr. on-call – Ibuprofen 102.5
yesterday afternoon (blood) rash ? off ANP Dr. Popper
—————————————————————— 1/23/2012 – Day 44 – Monday Burzynski Clinic Dr. SRB
gave name from pic
some itch MRI – was to have Wed (12/29/2011 prev MRI) less tumor less enhancement shrunk by at least 10%
call Dad
Been 1 month
Discharge
take Ashley
Rick
Fri – leave
—————————————————————— 1/26/2012 – Day 47 – Thursday Burzynski Clinic Stable Disease
stabilization
—————————————————————— 1/27/2012 – Friday – leave
—————————————————————— medication is administered directly into your body through Hickman line 24 hours a day[1]
not an easy option [1]
Pete and I learnt how to prepare and administer treatment ourselves and carried on in Britain for another 18 months (1 year 6 months)[1]
were there for 7 weeks, and scans showed in that time tumour reduced by 11%[1]
Thankfully has been successful in shrinking tumour[11]
blood was checked twice a week, was scanned every 6 weeks at private hospital [1]
Most importantly, seemed to be working [1]
—————————————————————— 6/2012 – back 6 months 3 scans
6/13/2011
12/7/2011
3/21/2012 – 1
5/2/2012 – 2
7/29/2012 – 3
7 weeks at Burzynski Clinic
Complete Response
—————————————————————— tumour kept getting smaller, in January this year it was all gone [1]
started treatment and after 9 months had complete response and will continue on treatment until 4/2013 / 5/2013[3]
now off treatment but still being monitored [1]
Dr Burzynski isn’t miracle worker [1]
There are well-publicised cases of families raising money for children to be treated at the clinic but children still tragically dying [1]
People have posted on our website that it doesn’t work, but I’m convinced that, if we hadn’t found him, I wouldn’t be here today [1]
====================================== SUPPORT ====================================== Pete Cohen:Team Hannah set up to save life of my partner, Hannah Bradley, who’s 28 years old and has brain cancer[3]
All this time, without knowing, Pete had been looking into things, searching, talking to anyone and everyone who could possibly help [1]
needed to raise around £200,000 to give her opportunity to have life-saving treatment at The Burzynski Clinic in Houston, Texas [3]
Pete launched campaign – friends and family gathered around, held events, our local radio station supported us – in 2 months already had £100,000, enough to start treatment[1]
You helped her to get it… [12]
Eagle Radio wanted to help give Hannah hope by raising money towards her fund [12]
you wanted to help too [12]
Hannah came in to Eagle Radio to meet Breakfast Show presenters PG and Bev[12]
Listen to interview here: [12]
Pete (Hannah’s boyfriend) met our reporter Anthony Zahra and starts by talking about how couple met: [12]
Jeremy (Hannah’s dad) spoke to our reporter Elizabeth Williams:[12]
photos on Hope for Hannah appeal [12]
——————————————————————
Fundraising events you told us about [12]
—————————————————————— 7/21 – Matthew Cank from Farnham doing sponsored bike ride with friends riding from John O’Groats to Lands End[12] http://2theend.co.uk
——————————————————————
** 2/24 (Friday) – Pure Dance at Backline, Guildford from 8pm to 2.30am House, electro & trance music with DJs on rotation Entry £10 with all proceeds going to the appeal [12]
——————————————————————
** 2/25 (Saturday) – Dinner, Dance and Auction at The Mandolay Hotel, Guildford (6.30pm to 12.30am) evening of fantastic food & excellent entertainment [12]
——————————————————————
** 3/3 (Saturday) – special night held at Godalming Naval Club by Hannah’s best friend
£7.50 a ticket All money to the appeal Includes – food, disco, raffles, auction and more [12]
——————————————————————
** 5/19 (Saturday) – Health, Beauty & Fitness Fair at Clock Barn Hall, Godalming Free admission, free talks on health, fitness and nutrition Includes – mini treatments, fitness drop in classes, taster sessions, new health products Raffle & bucket collection to raise money for Team Hannah [12]
——————————————————————
Your generosity was astounding and Hannah surpassed her target much earlier than she could have dreamed [12]
Hannah’s Annectdote
A film about Hannah’s journey to The Burzynski Clinic
film we made called Hannah’s Anecdote [3]
made to share with world Hannah’s journey to beat cancer and live normal life [3]
you can see Team Hannah blog we started October last year as well more information about Dr. Burzynski and treatment for cancer [3]
totally aware of controversy surrounding Dr. Burzynski but have seen with our own eyes he saved Hannah’s life [3]
share this with everyone you can, so together we can raise awareness of Hannah’s success and of Dr. Burzynski [3]
cookbook by Hannah available at teamhannah.com [1]
Any help you give will be most appreciated and will keep you updated with Hannah’s journey [3] http://www.teamhannah.com/
Thank you for donating, raising awareness and simply helping to give Hannah hope [12]
—————————————————————— Hannah’s Annectdote: (40:42)
——————————————————————
A film about Hannah’s journey to The Burzynski Clinic
——————————————————————
Look
You’ve got a spirit level in the cam, in the front of the camera for a reason
I know
Ok
—————————————————————— Hannah’s Anectdote
——————————————————————
I’m Hanna Bradley and I’m 27 years old
I have
Well, I found out I had a brain tumor in February 2011
The way I found out is, I had a seizure in, during the middle of the night
I don’t remember anything, but my partner Pete tells me that I did
Rushed to hospital and about week later I was diagnosed with a, an aggressive brain tumor
And then I had to have an operation to remove the brain tumor and I went back for the results, which weren’t that good and I had to go for a radiotherapy
And I spoke to a friend of mine, an incredible man, he’s a doctor, he, he’s retired, he said, why don’t you just look and find people in the world who still have this condition and still alive
So, that’s what I did
And I found some people, and it, and they all led to this guy Burzynski, but you mention Burzynski to uh people who work in the world of cancer, and it’s just like, they, you know, the barriers come up immediately Chemotherapy, radiotherapy, there’s no question about the fact that these things uh, are reflective and they are, save people’s lives, but that’s not what Hannah wants to do
(If I could go there, and take myself off there, I could) Burzynski’s work is, some people wouldn’t say it is gene-targeted therapy
Basically it’s peptides Peptides uh form amino acids in the body, and he’s found from his research that uh, certain people do not have these types of peptides, and uh especially people with certain types of cancer
What have you got to lose, and what’s the worst thing that can happen, if it doesn’t work ?
What’s the best thing that can happens ?
It saves her life
(laughter)
(I’ll give the ass a smack)
—————————————————————— video blog 13th of November 2011 (2:00)
——————————————————————
(Come sit down)
Good morning
Good morning
Good Morning
Why this week is such a big week is we go to see Hannah’s uh GP tomorrow, and we really need him on side with the treatment that Hannah’s going to have, and, and that could pose a bit of a challenge, because this treatment with Dr. Burzynski is not peer-reviewed, and what that means is that, with the NICE guidelines in this country, people are
very unlike to promote a uh treatment that isn’t peer-reviewed in the way that they would want it to be, but, we’re hoping that he will help and support is when we come back
Yeah
We will also go and see the oncologist this
Yes
which is gonna be a very interesting conversation because again, we want their support
It’s unlikely, very unlikely that they’ll give us the support that we need
because when Hannah comes back, she’s going to need MRI’s every month, and that’s just not gonna happen
We’re going to have to pay for that, but, we’ll let the pets do that of course
We’ll let you know next week, but this week is gone, but for now this is Team Hannah saying, Team Hannah, Team Hannah saying
Goodbye
Bye
Goodbye
That the wave that you do
(laugh)
I’m getting better at the wave
I don’t know about that, darling
—————————————————————— Royal Free Hospital London – December 2011 (3:19)
——————————————————————
You know, maybe I’ve been led down a garden path if you like, going to work with Burzynski, because you speak to any oncologist; which we have, lots of (?) specialists in this field and they say:
“No don’t do it”
“The guy’s a charlatan”
“You’re wasting your time”
“You’re wasting your money”
“It’s not going to work”
“There’s no clinical research”
But I feel in my heart that we’ve gotta do this
Not just because, you know, what is there left to do, but I actually think it’s going to work
Is it going to be a placebo effect, or is it actually going to be that what this guy does works ?
I’ve spoken to people who he, who he’s treated uh and they all can’t speak highly enough of him and of the clinic that we’re going to
So I’m going to film as much as I can of her journey, and she’s happy for me to film
And the clinic in Houston are happy for me to film whatever I want
So I’m going to
—————————————————————— video blog 10th of December 2011 (4:10)
——————————————————————
I don’t know how many blog videos we’ve done but we’ve done quite, quite a few and I think it’s amazing that we’ve got to this point
It doesn’t seem very long ago that we were sitting and talking about doing this, and within a few months we’ve raised all this money and we’re, my bags are packed
Your bags is almost packed
My bag is packed
And your bag is packed and we’re leaving tomorrow morning
I know there’s been a little bit of controversy
Yeah
about what we’re doing, but please, whatever you hear about it, we have done a lot of research into this
and we feel very confident about what we’re doing, were going to get very well looked after and we’ll be able to share all of that with you
So, next time you see us we’re going to be in
Houston
Texas
—————————————————————— Day One (4:52)
——————————————————————
Good morning Hannah
Good morning
And where are we ?
At the airport
So, you ready for this ?
I’m ready
Ready to start this next phase of our journey ?
Yeah
Ok
I’m really ready
I hurt, like I’ve got a massive headache
Yeah
That was pretty traumatic for you, wasn’t it ?
Yep
Pressure
Um, and getting through customs and everything like that
I felt like I was going to faint
Um, yeah, apart from that all good
Yeah ?
Yeah
And how’s it feel to be in Texas
It doesn’t feel any different at the moment
(laughing) (?) that’s a (?) Avis rent-a-car thing-a-ma-bob
—————————————————————— Day Two (5:37)
——————————————————————
(?) there you go
Right-o
Hello everyone
Hi
I’ve
Ok
I’ve got less hair than Pete
Are you looking in the camera or are you looking in here ?
I’m looking in here
Uh what are you looking there ?
(laughing)
Hello
Everyone
Today is going to be a very interesting day
We’re going to film, all that we can
We’re not going to meet Dr. Burzynski
We won’t be meeting him until the 19th, but we feel more than happy to be meeting his fellow doctors
What’d you reckon ?
You’re going to kill me in the car before you, we get there ?
Why
Because you’re trying to film and drive, and you don’t know where we’re going
Well spotted
Look
There it is
We’ve finally made it
So how’d you feel, that we’re finally here ?
Yeah
I feel good
Do you ?
Yeah
You ready ?
What are your expectations ?
I have no idea
Well, lets go and find out
Don’t have any expectations although I sure don’t want to be disappointed
——————————————————————
[Temperature]
(Close your lips please)
——————————————————————
[Eyesight]
(Ok
How about this one ?)
D
(Ok. We’ll have to go )
(laughing)
(I’m sorry)
Should I actually be able to ?
(#5)
Ok
P E C F D
(Ok. Good)
——————————————————————
So, was that bad ?
Uh, can’t see any of them
Oh, ok
—————————————————————— Meeting with Dr. Yi and Dr. Greg Burzynski (7:14)
——————————————————————
(?) we’ve reviewed your scans, your MRI, and we’re very aware of your case
Yes
We have permission to start you on the antineoplastons
Mhmm
which as you know are in the final stages of drug approval
Yeah
Dr. Yi is the oncologist on this case
Yeah
Likewise Dr. Rowkowski will be involved
Likewise I’ve an I’ll, I’ll be on the case
Ok. Great
And my father as you know is aware of what we’re doing here
Yeah
So as early as Wednesday we’ll be starting treatment
Mhmm
Tomorrow we can put in the catheter, and this is an external
—————————————————————— Day Three (7:44)
——————————————————————
What else is happening today ?
Look
Don’t want to think about it right now
Gonna have some sugar syrup put into me
(?) PET scan
Yeah
Which they inject sugar
I’d rather eat some
Yeah
Inject sugar and then you’re also having a, this Hickman line fitted
Yeah
Hopefully they’re gonna let me put on a white coat and come and be by your side
You can’t put on a white coat
You’re not a doctor
Well hopefully they’ll let me film
Well I don’t care about filming
I just care about you being there
—————————————————————— Hannah’s MRI scan review (8:15)
——————————————————————
So this is the one that was done in December, right ?
Yeah
This is the one that was done in December, and it has increased
‘Cause if I look at the, it’s more intense
Yeah
There’s more weight
Yeah
upon the image
Ok
Seen change in a month, right ?
Yeah
It’s in a month
That’s why
Less than a month
Yeah
That’s why kind of it’s a little scary
’cause it has
I mean it looks like it’s more prominent now
Yeah
—————————————————————— (8:46)
——————————————————————
after (?) this MRI scan, and you can see that the tumor is enhancing
She doesn’t know that
How will I tell her ?
Probably not, but she’s probably going to ask, and if the tumor grows like it’s, then you just saw in the scan, then how long does Hannah have left
—————————————————————— (9:06)
——————————————————————
Yeah
That would mean very
That’s pretty good
Ok
That’s good
That’s good enough
So any memory problems ?
Any speaking proc, speaking problems
No
No, not really
Ok
Spelling
Spelling, yes
Ever since surgery
So, what kind of problem ?
Like when you spell you miss letters ?
Yeah
Her spelling
Why, yeah
It’s just I’m jumbled
Ok
Yeah
—————————————————————— (9:28)
——————————————————————
Right
So uh were just getting ready now for Hannah to go in and have her PET scan and uh catheter Hickman line fitted and she’s just filling in the form
I’m not even going to ask her how she’s feeling or anything like that ’cause she’s feeling a little emotional
—————————————————————— (9:48)
——————————————————————
(?)
(laughing) You’ve just taken some , some Valium as well, have you ?
Not helping
This is like your biggest con, fear, isn’t it ?
I just show everyone what you’ve just done to my hand as well
—————————————————————— (10:04)
——————————————————————
What I’m doing is I’m creating a little tunnel under the skin
So I have to use just a little bit of pressure
So if I hurt you, you tell me
Ok ?
How are you feeling ?
Shhh
(laugh)
Well, you’ve done so well darling
I’m feeling really cold
Hungry ?
Yep
Alright
—————————————————————— (10:30)
——————————————————————
You look like you’re some sort of Holy Woman
People are going to come in here and bow to you
Did, did, did you feel that when it was going in and stuff ?
Not really
Little bit
It’s a little bit painful now ?
Yeah
It’s quite really painful now
Yeah
Well, it’s a massive tic, of something we have to get done
Yeah, I know
—————————————————————— Day Four (10:52)
——————————————————————
I’m feeling wrecked, absolutely wrecked
(laugh)
Well you had, bit of Valium yesterday
Yeah
And you had as much um local anesthetic
Yep
as he could give you he said, without knocking you out,
Yeah
but you were very, very brave yesterday, do you not think ?
I don’t think so
Why not ?
I wasn’t brave about the (canada ?) they put in here
—————————————————————— (11:23)
——————————————————————
Yes
What’d you think of
What, now what did you think of Judith Curran ?
Talk to
Oh, she’s great
( Skype on at the same time)
She’s like a mother
Yeah
Yeah
Is she ?
Yeah
(Yeah that’s fine. Whatever)
Yeah, she really does love you
( I’ve got something)
More than most
(?) all mom’s girlfriends
Mum uh Hannah just, I said, I just asked what she thought of you and she said she thought you’re like a mother
(Pete’s Mum)
Ohhh
I really do need you here
Oh dear
Well you have to have a partner mother at the moment
Yeah
But you need cuddles you mean ?
Yeah
Ohhh lots of cuddles
Oh no, no, no don’t
I asked
I’ll go
I need something dressed there
She needs help getting dressed
—————————————————————— (12:16)
——————————————————————
It’s, it’s, you know, it’s basically it’s uh, it’s a little roadway right into your bloodstream, so yeah, it has to stay very clean, and our thing is that we have to teach you
Yeah
how to do this
Yeah
—————————————————————— (12:32)
——————————————————————
You get 6 doses of antineoplaston a day,
Mhmm
they’re 4 hours apart
So, yeah, it’s almost 24 hours continuously
Mhmm
—————————————————————— (12:41)
——————————————————————
These are your bags
Ok. Thank you
and I’m going to wait until Dr. Barbera comes and talks to you about the pain medicine
Yeah
Then we will go ahead and hook up
Yes
because she did get the chest x-ray and everything’s a go
—————————————————————— (12:51)
——————————————————————
And everything goes in with a push and a twist
Ok
Quite simple
Alright
Yep
So obviously we’re gonna, when the fluid, we need to open up the clamp
Mhmm
And I always double, triple-check, make sure all the clamps are open
Yep
—————————————————————— (13:10)
——————————————————————
I’ve been on the treatment, I don’t know
It, it’s about
I don’t know
Half day ?
How are you feeling ?
It doesn’t hurt
Yeah
And this is what you’ve got to carry around with you
Yep
Now it’s like
It’s (?) my new bike
a baby
Something you have to have with you all of the time, and me with you all of the time
Oh (laugh) Oh god
I can cope with that
Ever since this all happened it seems like it’s just been one thing after another
Yeah
of obstacles
Yep
But we’ve got this far
Who woulda believed that we’d raise the money to get out here
Mhmm
which we have done, and now we’ve started on the treatment and I am pretty impressed with them there I must admit
Yeah
They’re really nice
—————————————————————— Day Five (13:52)
——————————————————————
Yeah
This is day, it’s day 4 yeah ?
Day 2 on the job
Day 5
Day 2 on the treatment
Mmmm I need a bit of a shave
um and um yep
You need a bit of a shave
So do I
Yeah, yeah, yeah, yeah, yeah
—————————————————————— (14:08)
——————————————————————
Hi
So, can I get ya
You need a pen ?
Uh, yes please
So pull this back ?
Pull it back to undo the lock
Ok, pump is off, so your next step is to disconnect it
So push in and twist, clockwise
—————————————————————— (14:26)
——————————————————————
How’s your new friend ?
Yeah, she’s good
Yeah ?
Mmm
What have we done today ?
We’ve learnt more lessons
I’ve learnt more lessons about changing the, changing the pump
How did I do ?
Honey you did well
You think so ?
considering
Considering what ? (laughing) How challenged I am
No, considering how hard it actually is
That you did well
—————————————————————— Day Ten (14:54) Meeting with Dr. Yi and Dr. Stanislaw Burzynski and
——————————————————————
Yeah, I think so far where we are we have been very impressed with all we’ve seen
Thank you very much
It looks like (?) we should not (?)
a pretty traumatic day because uh we met with Dr. Burzynskibut he didn’t give us the sort of news that we wanted uh because he’s concerned that the treatment may be enhancing uh and he wants us to stay here until at least um Hannah’s had one month on the treatment and to do MRI and see what’s going on
We can stay here
That’s the most important thing
Just imagine if we had to go home
You know ?
I know you’re tired of all this, you know, and its hard work, and it’s, you know ?
—————————————————————— Day Twelve (15:46)
——————————————————————
So the last time we kind of filmed was when we were with Dr. Burzynski and him saying do we want to stay and that
Yep
And how, how do you feel about that now ?
Yeah, i’ve got my head ’round it
Do you have faith in him and ?
Yeah, again I know that I’m in the best hands
—————————————————————— Pete’s colleague Dr. Hilary Jones appears on ‘Daybreak’ morning TV show in the UK (16:04)
——————————————————————
Are there question marks for you with regards to going over there to this particular clinic ?
I think what we have to bare in mind is that uh the treatment that, that Dr. Burzynski is offering is, is very uh experimental
It’s pioneering research, and pioneers in medicine tend to get a rough ride to begin with, and uh he hasn’t uh uh published the numbers of people in trials that convince the established authorities that his treatment uh works
It’s very interesting treatment
We’ve known about these peptides which can switch uh tumor genes on or off, and this is a different approach to these kind of tumors, that’s uh over and above oncology, chemotherapy, radiotherapy
Um, his results um, if you look at them um, sometimes appear extraordinary in some cases um but of course not in all cases
So it’s very difficult to evaluate, how effective it is
I I researched it pretty carefully myself because I have a friend there at the moment with his partner and the reports I’m getting back are they’re getting excellent treatment, excellent support, very impressed
This is somebody who, who knows a lot about medicine
Very impressed with what’s going on there
Um, we need to keep an open mind
Yes
Um it’s unfortunate it costs so much money but pioneering treatment does, and I really hope, that if you go that route that it works out for you
I really hope
Thank you
Indeed
—————————————————————— (17:20)
——————————————————————
So, that was uh, I didn’t know uh he was doing that, and actually the weird thing was that the day before I had actually contacted him just to say that we were doing really well
Yeah
But poor old Hilary was so caught up in that yesterday
On Twitter, I mean it was just nonstop
People just saying
“Burzynski’s a fraud”
Um, but we certainly don’t feel that he’s a fraud, do we ?
No
No
I get the impression that he’s 100% genuine
—————————————————————— 12/25/2011 – Christmas Day (17:50)
——————————————————————
Hello there
Hi. How are you today ?
We’re doing ok
Documenting that ?
Um yeah I’m documenting
(laughing)
everything
That’s against the rules
Really ? Oh dear
(? again)
Collecting evidence ?
Yeah, I am
We’re gonna sue
We’re gonna, we’re gonna sue a few people
(laughing)
That’s what you love to do in America, right ?
—————————————————————— (18:10)
——————————————————————
So same symptoms ?
Yeah
The flu symptoms
Mhmm
Yeah. Ok. How’s your breathing ?
The same
That was, really bad yesterday, wasn’t it ?
Yeah
Ok. Um, any headache ?
Yep
Ok. And you said you had, are they tremors or are they like shakes, like chills ?
Yeah, chills
Chills, ok
But, you know, like I couldn’t stop
Ok.
myself
It was just
Yeah
Ok. So it was un, uncontrollable ?
Yeah
Ok
—————————————————————— (18:41)
——————————————————————
This is how we spent Christmas Day, in the Burzynski Clinic
With the lovely Monica
Of course
And
How (?) would you have it any other way
And the Christmas songs
Hey (mouthing words to song)
—————————————————————— (19:04)
——————————————————————
We went to the clinic this morning, and she was shivering all night, fever
So she’s off the antineoplastons for the day, and she’s just basically in bed now, just absolutely exhausted, and now she’s got a little bit of swelling on the back of her head, which obviously is a ca, cause for concern when you’ve got a uh, a brain tumor
—————————————————————— Day Eighteen (19:04)
—————————————————————— Hannah was back on treatment yesterday, and last night her temperature went up to 102
So I phoned uh the clinic, and they said take her off the medication, the anti, antineoplastons
So I took her off
Her temperature came down
Then it went up again, and then we went back to the hospital today, back to the clinic, and they’re giving her a much smaller dose um and she’s on much smaller dose and she’s just come back, and she’s just exhausted
And she, I can see she’s just so close to breaking, which is cracking completely
(Christmas tree)
—————————————————————— (20:07)
——————————————————————
um and I’m just, got to the point where I can’t, I’m just, don’t know what to do
—————————————————————— Day Twenty (20:22)
——————————————————————
Well the last week has been very up and down
Um I have come off the dose
Gone back on it
Come
Come off it
back on
Yeah, and then come back off it again um, for several reasons: Fever, um shaking, chills, fever, and bacterial infection, um viral infection, every infection, um and then ended up with me having to go to E.R., the Emergency Room
Well at that point I was really fearing the worst
Mhmm
Because you’d a scan when we got out of here, right ?
Mhmm
and the scan definitely showed some tumor growth
Mhmm
um and I was thinking, what 2 and 1/2 weeks later from that
Yeah
That we were going back in the hospital
Mhmm
Because the tumor had gotten bigger
Yep
What has this whole experience like for you at the moment
Oh it’s just surreal
I just, I can’t explain it
It’s just surreal, to me
What, like its not happening to you ?
Yeah
You did actually said to me yesterday in the hospital, you said:
“I’m at my wits end”
“I don’t feel I can take anymore”
Yep
And what about today ? (laugh)
Well, I reckon I’ve been, I’ve just realized I’ve got to get on with it again
—————————————————————— Day Twenty-Two (21:53)
——————————————————————
So it’s, January the 1st, 2012, and we haven’t really got the,
We haven’t got off to a great start, have we ?
No
Why ?
Because I’ve had a fever
Uh you, when did you start, feeling feverish ?
In the middle of the night ?
Yeah. Yeah
And your temperature went up to 102
Yeah
What Dr. Burzynski thinks you, why you’re having a fever
you’ve either still got some flu-like symptoms or it could be the, the tumor actually breaking down
We’ve also got some problems with our pump this morning
(So what do you think ?)
Yeah, it’s not closing again
(And then you can also see the)
Uh, there it goes
(?)
But
It ain’t gonna stay that way
I don’t think it’s going to stay closed
Huh, what’d you think about that ?
(unintelligible)
(? get it fixed)
(and this looks like it’s ?)
(? fix ?)
Love you
—————————————————————— (23:09)
——————————————————————
The last time we saw you, you felt like you were completely drunk
Yeah
And you had double vision
Mhmm
So,then what, ended up, happening ?
Well, one of the nurses, kindly, pointed out
She said: “What have you taken ?”
That is where we recognized it was an anti-seizure drug, that I hadn’t taken before
And how do you feel now ?
I feel ok
I feel a but shaky
Yeah
I just have to (?) something to eat
Um, I’m just so tired
—————————————————————— (23:50)
——————————————————————
Hi, I’m Pete Cohen
Uh you might recognize me
Oh god
from morning television in the
Yeah
U.K.
Nobody recognizes you anymore
—————————————————————— (23:58)
——————————————————————
You should keep your fingers above the little
Ok
guard thing, yeah, and try to hold this
I’ve done it
as straight as you can
Ok. I’ve done it there Gary
and put some support
Yeah
on it
In there
and then you twist them down
Easier said than done (?)
I know
You can give it much more of a whack and you can u, use the other end as well
Ok
No, like this
(laughing)
Got no chance
Use the other end
(?) better
Ok. Thank you
(laughing)
You’re welcome
There you go
There you go (?)
There you go
—————————————————————— Day Thirty-Eight (24:33)
——————————————————————
I’ve never had to take care of anyone, the way I’m kind of having to take care of Hannah, and its just constant, and I get stressed around her, which isn’t fair, you know
She’s now got another temperature
She’s got a throat infection
Her temperatures up, uh and uh if it goes up over 102, it’s 101.8
If it goes up over 102 she’s got to come off of the treatment again um, oh, just, just feels like non-stop, you know
Cooking, and changing the bags
I’ve been into this, the clinic 3 times today
Taking her blood
Taking her back, get supplies
Take her back there
—————————————————————— (25:24)
——————————————————————
I’ve got a fever
It was over 102 last night
Yep. And
I’ve got antibiotics
Which you’ve been on for how many days ?
3 days
And we’re off the treatment
So, all in all
But you feel bad because you just want to be on the treatment, and just keep coming off
It’s just
How does that make you feel ?
Just, I don’t know, angry
Disappointed
Pointless
What you mean like
The while things pointless
Yeah
because you can’t stand
I just hope one day we can look back at this and laugh
Yeah
and just think: “We beat that”
because you couldn’t be doing anymore than what you’re doing
You know ?
You really couldn’t
Should really get a few of your friends to come over
Yeah
’cause you must be a bit bored of me
(laughing). No
C’mon, I’ve been really annoying
How grumpy was I yesterday ?
(laughing)
on a scale of 1 to 10 ?
(laughing)
I don’t know
C’mon
6
Really ?
Yeah
—————————————————————— Day Forty-Two (26:54)
——————————————————————
It’s 6 o’clock in the morning, and Hannah is lying here
Her temperature went up to the highest I’ve ever seen a temperature, on the thermometer
Where is the thermometer ?
Up to 104
I’m gonna just, I’m just trying to cool her down
I just phoned the doctor on-call and she said take some ibuprofen which Hannah has, and the result is ?
It’s come down a bit
Where is it ?
There it is
102.5
Well you’d think it’d come down
My god you’re so hot
I can’t believe how hot that is, thats got
Unbelievable
—————————————————————— (27:50)
—————————————————————— Hannah
Show me what’s going on
This all came up
When did you notice this ?
Yesterday afternoon, but its got worse since then
Yeah, lift up a bit higher if you can
Just zoom in on that
Yep
So it’s just one thing after another at the moment, isn’t it ?
Aye ?
Yes
Open your hands a little bit
Yeah (?)
And obviously we’re off, treatment at the moment
Mhmm
And we’re just waiting for who ?
Dr. Popper
What do you think he’s going to have to say ?
Mmm I don’t know
Ok
Ok, bye
—————————————————————— Day Forty-Four (28:35)
——————————————————————
Who um gave it a name ?
I sent a picture of it to Dr. B and he came back and said I think that’s what it is, and I looked into it and could see that that’s exactly what it is
Well does it bother you or does it just ?
No, it does
Like
Yeah
And itch ?
In some cases
Oh I’m sorry
Especially under the dressing
(?) Hannah had a fever 104 on Friday night
104 ?
103.9 I should, if I’m being absolutely, precise
So I think it’s brought this out
I think you can, you can say 104
—————————————————————— (28:50)
——————————————————————
So, we’re now going to have the MRI that we were going to have on Wednesday
We’re going to have it today
(laughing)
—————————————————————— 1/23/2012 MRI (29:29)
——————————————————————
This is one that was just done today ?
2012 Jan 23
Acq Tim: 12:13:09
955000
320 x 230
Today
2011 Dec 29
Acq Tim: 14:50:12
497500
256 x 192
Today
So the difference is that you can see there
How would you describe the differences between
and what you see here ?
Well 1st of all the size of the tumor is less, and um, if you see the actual, the solid enhancing part of the tumor
This is how it looks now
So from that you can see that it’s definitely, something definitely is going on
It’s changing
Yes
There’s no question about that
The size is less
The intensity of the enhancement is less
So wha, whe, whe, when you see something like this, wha, what does that show you ?
Well, certainly the, we see that the tumor’s most likely working, as the tumor is showing less enhancement, meaning less activity
Yeah
And the tumor’s by effect smaller
Yeah
So, ideally the next scan should be better
So we, we’re definitely going in the right direction
That’s, great
That’s for sure, and it’s brilliant that uh we’re going home on, on
On a high note
On a high note
Especially after our trials and tribulations
So
Certainly
—————————————————————— (30:47)
—————————————————————— Hannah’s tumor has started to shrink, and she doesn’t know
She doesn’t know that
So I’m going to go in the house
I think she’s still asleep, and give her the good news
(?)
Hannah
Can we go home ?
Can we go home ?
Guess what ?
We can go home ?
Yeah
Yea !
And guess what ?
Guess what
Your tumor started shrinking
Yea !
It shrunk by at least 10%
Let me just give you a kiss
Thank you
It’s ok
It’s ok
—————————————————————— (31:30)
——————————————————————
Hi Daddy
Hello, how are you ?
Yeah, I’m sorry for ringing so late
That’s alright
Um but I’m ringing with really, really good news
Good, that’s what I wanna hear
Go on you tell
No, you tell him
I don’t think I can
(Go on ?)
(? tell me ?)
Um
C’mon
my tumor
Yeah
has already shrunk by 10%
You’re f’n ‘ell man
F’
(?)
That is absolute, amazing
And considering I haven’t been on the treatment for
You’ve been on the dose, off the dose, and on it
F’n ‘ell
What
When you get started on the
F’n ‘ell man
(laughing)
I’m glad you phoned me
Yeah, you’re the 1st person I called, obviously
—————————————————————— (32:22)
——————————————————————
So what can you believe we’ve now been here for one month
Yes
And we’re going now
What are we going in to have done ?
Hopefully, be discharged
And are you pleased with the progress you’ve made ?
Yeah
It’s been up and down
Yeah it’s been up and down
(Trip, trip ?)
You look like a Hollywood star
(laughing)
Not many Hollywood stars have a backpack like this though
Yeah but it was also a week ago
I don’t know how long ago that was where you couldn’t even
What ?
What ?
In you go
In I go
Hi
We can’t stay away
(laugh)
We’re getting discharged now
Oh really ?
I think so
Well that’s wonderful
Yeah
Well yeah, oh we, we don’t wanna go
Right turn mate
Which floor ?
2nd floor
Oh, you’re still filming
Yeah, I just, you know, I mean, you know, why not ?
I haven’t filmed all of this
We’re going up
This was great when I was feeling really sick, ’cause it
Seems like we’ve spent a lifetime together, we used to go to the 4th floor
(laugh)
(Ok)
Hi
Ohhh
Hello
Hello
Hi
Hi
Hi everyone
Hello
Hello
Um Hannah and I are leaving on Friday
What’s going to be your overriding memory of us ?
No
What are we gonna do ?
Hey
Are you going to miss us ?
What are we gonna do ?
Of course
Peace and love
(Remind me, is Hannah ?)
Why don’t you stay
(?) who’s your favorite, because you remember we said we were gonna say
(laughing)
‘Cause, ’cause we can o, we can only take one of ’em home, and who’s it gonna be ?
(? the rash (?) dude)
(laughing)
Well you can only take one attribute from each person, what would it be ?
I’m going to take Ashley home
(laughing)
Really ? Why ?
Yes, I like that
Because she’s, because she has the same condition ?
Yep
(laughing)
Because she can look after
Very good
(laughing)
So Rick you were told I was a big shot
Yes, going to film everything so
(Who knows ?)
you have to watch out
So, c’mon, what, what point in your head did you think: “My god this guy’s an absolute idiot”
(laughing)
—————————————————————— Day Forty-Seven (34:55)
——————————————————————
This, this December 29
This is January 27
Here we have the tumor, visible previously
And we have now
Certainly, outside diameters have decreased
Mhmm
So to some extent, but also the, the intensity of the enhancement, has decreased
Mhmm
As you can see this was much brighter before, now is less
Which means that the tumor is decreasing and it’s uh losing its activity at the same time
Mhmm
Which is a good news
But, again, we are not at the remission
This is called Stable Disease
Stabilization
Mhmm
Probably next time we see this is shrinking more and this wide band is getting thinner, and thinner, and finally
Mhmm
it should disappear
So that’s what you should be looking for
Ok
—————————————————————— (35:43)
——————————————————————
There’s some hair on the camera
Well it’s not mine
It’s definitely not mine
Hmmm
Um
No
I’m gonna start
Ok
(laughing)
Go on then
Ok
So it’s June 2012, and we have been back for approximately 6 months from the, America, and generally it’s all going well
I’ve had about 3 scans since I have been back, and they’ve all looked fairly positive
I think they’ve looked more than positive but yeah, go on
Carry on
(laughing)
Um, yeah, so the tumor, well the enhancing part of the tumor is getting smaller
Basically there’s such a small little part left that I’m sure when you watch this you’ll be able to see some images so people can see your scans
December 7th 2011 scan
Yeah, mhmm
March 21st 2012 scan
and we know that if Hannah hadn’t had this treatment, with the type of tumor that she had
May 2nd 2012 scan
she might already be dead, or she probably wouldn’t be here
June 13th 2011 scan
Yeah
much longer
July 29 2012 scan
She is very much alive at this point in time
Yeah
And what’d you think about all this controversy, because the controversy around what we’re doing, and it’s just, just
I can’t believe it personally
I find it very, very hard the, the hatred and the skepticism, of, um, what Hannah’s doing
What, what, what’s that like for you ?
Well, as I, as I’ve always said along the way, you know, any of the skeptics, what would they do, if they were in my position ?
Would they want to die in 3 to 5 years or ?
Probably less than that
Uh (both)
And that’s a horrible thought
Um
Yeah, uh everyone has a, has a right to be sceptic and everyone has a right to their own opinion
Yeah, they do
Um, and, but the funny thing about people’s opinions is, opinions are often based on, what they’ve heard
Yeah
or what someone hasn’t done, whereas uh, we spent 7 weeks at the Burzynski Clinic uh
And we saw everything
We saw everything
We spent time with this man um, and I tell you from my, from, from, I think from both, I can maybe speak for you hey ?, but uh
(laughing)
he’s one of the most honest, kindest people
Yeah, he is
‘Cause I, I said to you, the other day, about making this film, and you said: “Even if I was going to die tomorrow, I would still want this to be made”
Yeah
You remember saying that ?
Yeah
What, what, why did you say that ?
Why ?
Because, it might give other people a shake up
Mhmm
Yeah
Yeah, because uh, yeah
Why did we make this ?
Well I made this because I thought it was a journey that was well worth documenting
(?)
and maybe could help other people, and maybe help people realize there are other options, apart from the conventional treatment for cancer, and to inspire people
I hope you’re inspired by Hannah’s story because she’s an amazing, she’s a, honestly she’s annoying sometimes
(laugh)
but not very often
So are you. Yep
She has such a desire to live, uh and to enjoy her life, and I think
I don’t know, if there’s anything else that we
Ok, that’s enough for now
Hannah’s most recent scan confirmed she has now had a complete response to the treatment
—————————————————————— (39:35)
—————————————————————— Special thanks to
Bacon, Lesley
Bradley, Jeremy and Irene
Cank, Elizabeth
Cohen, Judith and David
Gooden, Lindley
Jones, Dr. Hilary
Levitt, Chris and Gina
Martinez, Dr. Juan
Merola, Eric
Newman, Ofir
Norouzi, Minou
Ramsey, Anna
Rowkowski, Dr. Bob
White, Gemma
Hannah Bradley’s GP The Eagle radio station
—————————————————————— (39:40)
—————————————————————— Dr. Stanislaw Burzynski
and all the staff at the Burzynski Clinic
—————————————————————— (39:48)
—————————————————————— camera Pete Cohen
additional camera Lindley Gooden
editor Jamie Lowe
—————————————————————— (39:54)
—————————————————————— A film by Jamie Lowe & Pete Cohen
—————————————————————— (40:00)
——————————————————————
This film is dedicated to all the people who donated their time and energy to raise funds to save Hannah’s life
—————————————————————— (40:08)
——————————————————————
To follow the progress of Hannah’s recovery and find out more about the treatment she received please visit: http://www.teamhannah.com/blog
====================================== [15] – 2/17/2012 – Friday – REAL LIFE – ‘I’ll try anything to beat brain cancer’
—————————————————————— http://m.gulfnews.com/i-ll-try-anything-to-beat-brain-cancer-1.981203
====================================== Team Hannah Blog (2:46) 4/1/2013 – Posted by Hannah
======================================
(laughing) Don’t
‘Cause you’ll put this bit in
Promise ?
Yeah
Ok
(laugh) Ok, so, it’s April the 1st and it’s 2 years on since I had my operation and but ? obviously is out
So, I just wanted to (laugh)
Start again
Start again
Start again
Start again
Ok
Ok
I don’t believe you
I have
Start today again
(laugh) I don’t believe you
It didn’t go “beep beep”
Because it’s on silent
(laugh) Do you think that I’m an idiot ?
No
(laugh)
Ok
3 2 1 go
Hi there um it’s (laugh) the, the 1st of April and it’s 2 years on since I had my operation and I’m pleased to tell you that I’m obviously still here, and um that’s thanks to you guys and thanks to me I suppose from, for fighting so hard for my life
And what, and what have you been up to then ?
I have been up to um just resting a lot and uh making up new recipes uh
Your next book
Yeah, for my next book and
Yeah, that’s pretty much it
And when are you thinking you might be able to come off the treatment ?
June
End of May
June
I have a scan in a couple of weeks and we’ll update you after that
And what will that be like, coming off the treatment ?
Oh, it’ll be amazing
Yeah, amazing
So you won’t be walking around with
No
this fellow here ?
No
Ok
Is there anything else you’d like to say ?
Um, just love to you all
Oh
The wave
—————————————————————— Team Hannah Blog (3:34) 3/2/2013 – Posted by Hannah
======================================
Hi
This is the Team Hannah blog and it is the 3rd of March and Peter is actually filming me today
He’s not there, where he normally is
Yeah
Exactly
So I’m on my own
Flying solo
Um I’d just like to say how well I’m doing and my last
Ohhh went a bit northern then
My last scan um was mid-February and it showed no enhancing tumor
So that’s really good
Um I’ve just got um a really cystic area in my head
So it looks like they’ve predicted June me me to be off the treatment
So, fingers crossed for June
What will that be like to, to come off the treatment ?
Um, yeah, it will be
The treatment is so uh, restricting I would say
Yeah, it would be good to come off
And what else have you been up to ?
I have been (holding up Team Hannah Cookbook) selling lots of copies,
Yeah
and, and,
the other book a little bit
I know that you mentioned in the last blog, but just
What, what’s the book about ?
Well it’s low-carb recipes and I’ve
Been on the radio
I did a radio
promoting it and um it’s great for anyone who wants to cut out sugar
to lose weight and decrease their, and what, decrease their
Risk
Yeah, risk of getting disease
Yeah, ’cause we saw a doctor in America, Dr. Rowkowski
and he, and one of the things he said to you was you really need to cut sugar out of your diet
to
sugar is what he said
Yeah
Um, and you’ve been getting a lot of people that
trying your recipes and taking photos
Yeah
picking up
on Facebook on Pete’s favorite page
to cook something from the book
put them up on the
page as well
And um where can people find out about your book
Um just slide over to, to Hannah Cookbook and you will find it there
And your blog as well, yeah ?
Yeah
So, I think we’re done
I just want to say there’s an airplane going overhead
Thank you to everyone whose supported us
it seems a lot of, a lot of film
And why are you laughing
Pajamas
pajamas
I didn’t quite
yep
What are those
(laughing)
This bench has seen a lot of action
Yeah, it has
Video action, that is
(laughing)
And we’re very thankful to everyone
Yeah
Thank you, yeah, again
Yeah
We try and do one after next scan
Big wave, please
Bye bye
Bye
====================================== Sapphire Sings For Team Hannah
1/3/2012 – Posted (3:00)
====================================== (Last) Christmas, I gave you my heart
The very next day, you gave it away
This year, to save me from tears
I’ll give it to someone special
Once bitten, and twice shy
I keep my distance, but you catch my eye
Tell me baby, do you recognize me ?
Well, it’s been a year, it does not surprise me
Happy Christmas, I wrapped it up and sent it
With a note saying, “I love you”, I meant it
Now I know, what a fool I’ve been
But if you kiss me now, I know you’d fool me again
Last Christmas, I gave you my heart
The very next day, you
—————————————————————— (1:04)
——————————————————————
Ok Sapphire, all I have to say is “Thank you, thank you, thank you
You have compiled a CD, um, in aid of Help for Hannah, and you have had quite a lot of sales so far, and you have got a beautiful voice, and I’m sure you’ll go very, very, very far, but “Thank you”, and this is just a little “Thank you” for you, but obviously other people are going to hear it Thank you Love you
Bye
Did you
Sorry
Did she also, sing this yesterday, uh, somewhere?
Yeah, she sung it at Aldershot uh Football Club
Again, so Aldershot was playing football against another team
Plymouth, yeah
Plymouth
And she sang it for everyone ?
Yeah
And they raised some money for you ?
Yep
Yes, so this has been a big “Thank you” from both of us (laughing)
Let’s, let’s play out a bit more of that song
Ok
‘Cause we love this song
It’s off
Uh yep, it’s my favorite Christmas song
It’s the only Christmas song
(gave it away)
we can hear when it’s not Christmas This year, to save me from tears
I’ll give it to someone special
A crowded room, friends with tired eyes
I’m hiding from you, and your soul of ice
My god I thought you were someone to rely on
Me ? I guess I was a shoulder to cry on
A face on a lover with a fire in his heart
A man undercover but you tore me apart
Now I’ve found a real
Thank you so much
——————————————————————
An Update For You
10/21/2011 – Posted
A Message From Pete About Team Hannah (3:07)
A MESSAGE FROM PETE
Hi it’s Pete Cohen and I just wanted to share something with you
Uh in February this year my girlfriend was diagnosed with a, with a brain tumor and when this happened it really obviously rocked our world
You know, everything seemed to be ok
Everything was great in life
And then something happened, and everything changed
And I don’t know whether anything like that has ever happened to you
But these things happen don’t they
And when they happen they really test you
They really challenge you
They, it’s very easy
It made me question lots of things
It made me think to myself, well, you know, what, is life, really fair ?
You know, should this happen to such a young person ?
These things do happen
And it really puts us in a position where it questions what we have
What we have to deal with such difficult circumstances
And I’ve definitely found things in myself that I didn’t know wa was there, you know, resolve, compassion, determination just to, to keep going
And this is the thing human beings we all have this kind of, we all have something else don’t we
All, we all have something more than our stress, and our worry, and our anxiety
We have a our true nature I think can overcome so much, of what life throws at us
You know, obviously we can’t overcome, everything
But what I really wanted to share with you is something that I’ve been so taken aback with, and that’s the beautiful nature of human beings, because we’re trying to take my girlfriend over to America to be treated over there, and we’re having to raise a considerable sum of money, and we’ve actually had to ask people, for help
Now that’s something that’s a bit alien to me, is to ask people and say, you know, can you help me, can you help us
Maybe that’s an insecurity that I have
Bur we’ve asked for help and it’s been amazing to see people all over the world spread the world, donate some money
And I’ve been so touched by that
It’s so life affirming
It so, it gives us such great strength
Any my girlfriend and I have been
so touched by that
So what’s my point here ?
Recognize how important it is for all of us to support each other
Recognize how important it is to affirm each other
You know, that’s one of the most important human needs we all have;
affirmation, it’s the fact that, to take the time to recognize each other
Hello
How are you
I care for you
So, thank you so much for watching this, and if you want to help us out please just uh visit the web-site we’ve put together for Hannah
It’s just called Team Hannah . com, and on there you can see a little more about Hannah and what’s happened to her, and the treatment we’re looking for her to have, in America
So, I hope you all have a great day and please, take the time to be there for other people, to care for other people, because that’s what makes this world great
Thanks for watching
Bye, bye
======================================
v=p5tAeYsNOZQ?rel=0
======================================
——————————————————————
Hannah’s message [3]
——————————————————————
(3:02)
——————————————————————
Ok
So what’s your name ?
I’m Hannah Bradley, and I’m 27 years old, and I come from North Hampton
And what happened to you ?
I had a seizure in middle of the night and my partner tells me I was rushed to hospital
That was in February 2011
And from there I had lots and lots of tests, and they decided that I had a brain tumor, and they were going to operate, and they successfully operated on the 1st of April, 2011, and they, the biopsy went off to be um checked
I found out that I had a grade 3 tumor
I then, under, underwent a, I had a 6 week course of radiotherapy, and that left me with no hair, and can’t remember what else (laugh)
And um that I went under another MRI scan 6 weeks after radiotherapy and we, that again wasn’t particularly good news, and we found out that there was still remnants of the tumor, and the future for me is very uncertain
So what, what are you looking for ?
What are you looking to do ?
Um, I, sorry
What do you want Hannah ?
What is it you’re looking for ?
Um, mainly I, um, I can’t
You just want to live, right ?
Yeah
So what are you asking for ?
What, what, what do you need ?
I um, I need people to raise money, for, uh, my treatment
I’m looking to going to America because there are things that they can offer me here on the NHS or locally (?) is very, very limited, and there’s a doctor in Houston, and he’s able to help
So you want some help in raising some money, yeah ?
Yeah, it’s completely out of our reach to raise that much money, and it’s, I’d like help to raise the money
——————————————————————
9/17/2012
Monday, 17 September 2012 07:23 | Written by Administrator
Hannah Bradley
Hannah’s amazing story, fighting and winning over her Brain tumor (Anaplastic Astrocytoma) is available on her support site
Team Hannah
There are more videos by Pete and Hannah, documenting her fight and the Burzynski Clinic
======================================
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/
======================================
[15] – 1995 (4/3/1995) – Dr. Mario Sznol to Burzynski
——————————————————————
Department of Health and Human Services, Public Health Services, National Institutes of Health, National Cancer Institutes
Dear Dr. Burzynski,
Dr. Friedman asked me to respond to your letter of 3/29/1995 regarding the change we have been considering in eligibility criteria for the Memorial Sloan-Kettering and Mayo Clinic phase II studies of antineoplastons
At the investigator’s request, the amendments to modify the eligibility restrictions for size of tumor, number of tumors, and leptomeningeal spread, and to allow entry of patients with KPS of 60, have been approved
These amendments were initiated by the investigators when it became apparent that many good candidates for the study were being excluded because of what were perceived to be overly stringent and unnecessary eligibility restrictions
Approximately a year ago, we wrote to you asking for your concurrence to make similar changes to the protocol
(see enclosed letter)
We have documented that the revised eligibility criteria are consistent with those used in your very own protocols that employ identical or nearly identical treatment regimens
Furthermore, in a review of the 7 patients in the best case series presented to NCI, we have found that perhaps 4 of the 7 patients who apparently had tumor shrinkage would not have been eligible to enter the NCI phase II studies under the original stringent eligibility criteria
(see attached)
These types of patients will now be eligible for study using the revised eligibility criteria proposed by the investigators and recently approved by CTEP
Despite the difficulties in accrual, we are committed to completing the phase II evaluation of the antineoplastons
Our goals remain unchanged, that is, we wish to determine whether the drugs used in the similar manner as you recommend, and in the similar population of patients, will yield results consistent with those in the best case series
As noted above, our careful evaluation of the materials you have provided indicate that the amendments to the eligibility criteria do not deviate from the eligibility criteria and methods you have employed in your experience
We would appreciate the opportunity to review your data, alluded to in your letter, that support the contention that inclusion of theses patients requires a different treatment regimen or is unsafe
In the meantime, we will allow the amendments to stand, since all evidence you have provided to date indicates that these newly eligible patients may have a chance for benefit without undue risk of harm, and are appropriate candidates for evaluation of the drug
We will forward the data on the 1st 5 patients in a separate mailing as you requested
Pg. 2
However, you have asked that we suspend accrual while you review the data
There is no medical or regulatory reason to suspend accrual at this time
Suspending accrual will likely further damage the efforts the investigators have made to increase accrual to the trial
Mario Sznol, M.D.
cc:
Dottie Tisevich
Michael Friedman, M.D.
Mary McCabe
Office of Alternative Medicine
Pg. 3
Antineoplaston Cases
1. Histology partial lobe glioblastoma multiforme
Size 2.3 cm largest diameter
Response CR possible
prior Tx RT, surgery
2. Histology anaplastic astrocytoma stage IV grade 3
Size 3.0 tumor 3.5 tumor and edema
Response CR possible
prior Tx RT
3. Histology infiltrating glioma (astrocytoma or mixed astrocytoma / oligodendroglioma)
Size 4.4
Response good PR, possible CR
prior Tx 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 Tx vitamins and laetrile
6. Histology glioma consistent with anaplastic astrocytoma, differential: anaplastic astrocytoma or spindle cell variant of oligodendroglioma
Size 5.1 x 2.2
Response CR
prior Tx RT
7. Histology Infiltrating anaplastic astrocytoma
Size 4.0 (L) 4.8 (bifrontal)
Response good response – possible CR
prior Tx RT
——————————————————————
======================================
1995 (4/3/1995) – Dr. Michael A. Friedman to Burzynski [16]
1995 (4/3/1995) – Dr. Mario Sznol to Burzynski [21] (3 pgs.)
1995 (3/29/1995) – Burzynski to Dr. Michael A. Friedman
======================================
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/
======================================
[9] – 1993 (11/2/1993) – Michael A. Friedman, M.D., Associate Director, Cancer Therapy Evaluation Program (CTEP), Division of Cancer Treatment, National Cancer Institute (NCI), Department of Health & Human Services (HHS), Public Health Services, National Institutes of Health (NIH) to Burzynski [3 pgs.]
Department of Health and Human Services, Public Health Services, National Institutes of Health
Dear Dr. Burzynski:
With regard to your letter of 10/26/1993, you specifically state
“The medicine will be sent to you immediately once you make the corrections to the protocol that we have requested”
We have substantial factual disagreements and scientific reservations with many of the comments made in your 10/26/1993 letter, including your preposterous claim that the NCI wasted 8 months
Nonetheless, we will accede to all the modifications that you have stipulated
We do so because we are committed to beginning the clinical studies as quickly as possible
We presume that these are your final comments, since all the changes will have been made and we will have addressed all of your concerns regarding these studies
The revised protocol will be sent to you as soon as it is received from the investigators
Based on the promise in your letter, we expect that the drug will be shipped to the NCI repository the next day
The changes to made to the protocol are as follows:
1. The dose and schedule will be modified as exactly as your require
We believe this to be the dose and schedule found in your protocol BT6, with dose escalation and maximum dose guidelines for adults clarified in your letter of 10/13/1993
2. The Memorial study, as written, has 2 separate components, one for patients with glioblastoma multiforme and one for patients with anaplastic astrocytoma
Accrual to each stratum proceeds independently, and analyses of each stratum is separate
However, we will ask the investigators from Mayo Clinic to join the Memorial study, rather than conducting an independent trial
This will effectively evaluate on the one hand patients with glioblastoma multiforme, and on the other hands those with anaplastic astrocytoma
Pg. 2
Patients with either disease will be enrolled at both Memorial and Mayo sites
This modification has 2 advantages — it limits total accrual to 35 patients per histology, as you request; and it accelerates accrual, since each institution can enter both types of patients on the studies
3. As you stipulated, Fleming’s original statistical design will be used utilized
15 patients will be entered independently to each stratum; for each stratum, if there is 1 response, accrual will proceed to a total of 35 patients
Thus total accrual will be 70 patients if both strata proceed past the 1st stage
(the initial 15 patients per histology)
4. According to your wishes, all scans for tumor measurements and laboratory test will be performed within 7 days of initiating protocol therapy, rather than the standard 14 days now specified in the protocol
5. The eligibility criteria will be modified to accept only patients with a Karnofsky performance status of 70-100%
6. As you require, the protocol response criteria will be based on objective tumor measurements and will not include assessment of neurologic status
Neurologic status will be evaluated separately
7. In accordance with your letter, we will arrange a review of data after accrual of the 1st 5-6 patients, which should occur 6 months after the study has been initiated
This should be sufficient to assure that the conduct of the study is satisfactory
The Theradex database is also available to precisely determine if the conduct of the study has followed protocol guidelines; the study centers will also be audited on-site by Theradex (independent contractors) every 3 months
In your letter you express concern regarding what you perceive to be bias against alternative treatments by Mayo Clinic and Memorial investigators
Please note that the investigators participating in the antineoplaston studies volunteered to do so because of the findings of the NCI review of your best case series
To my knowledge none of the participating investigators have expressed (publicly or privately) a position for or against Antineoplastons
Both institutions have a distinguished record in clinical investigations, and have been leaders in subjecting all treatments (including alternative interventions) to fair and objective clinical research
We are confident that credible clinical studies will be conducted
Pg. 3
Finally, if even after modifying these studies in accordance with your stated wishes, you are unwilling to supply the antineoplaston materials, please inform me as quickly as possible
We will then seek alternative sources of this family of molecules for proper clinical evaluation
Michael A. Friedman, M.D., Associate Director, Cancer Therapy Evaluation Program, Division of Cancer Treatment, NCI
cc:
Dr. Samuel Broder
Dr. Jan Bruckner
Dr. Bruce Chabner
Dr. Jay Greenblatt
Dr. Joseph Jacobs
Dr. Mark Malkin
Ms. Mary McCabe
Dr. David Parkinson
Dr. Mario Sznol
Ms. Dorothy Tisevich
——————————————————————
======================================
1993 (11/2/1993) – Dr. Michael A. Friedman to SRB [9]
1993 (11/2/1993) – Dr. Michael A. Friedman to Burzynski [14]
1993 (11/2/1993) – Dr. Michael A. Friedman to SRB [19] (3 pgs.)
1993 (11/2/1993) – Dr. Michael A. Friedman to Burzynski [24]
1993 (10/13/1993) – Burzynski to Dr. Michael A. Friedman
1993 (10/26/1993) – Burzynski to Dr. Michael A. Friedman
======================================
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
======================================
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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
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