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
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
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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
——————————————————————
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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 ?
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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]
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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)
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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
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====================================== 1/2012 – Sonali Patil, Ph.D., Research Scientist at The Burzynski Clinic (18:22) 9/18/2012
======================================
So you, you, you’re a scientist here ?
I’m a scientist here
And, and you work, just with antineoplastons ?
Not necessarily
This is our cell biology lab, and in molecular biology we do basic research on the antineoplastons
Sometimes we also study it in combination with the other, uh, medicines that Dr. Burzynski is interested in
So, but mostly antineoplaston
This is looking at mechanism for action
Trying to understand how it treats the cancer cells, is able to kill the cancer cells without damaging the other cells of the body
So mostly antineoplaston is the target here
And what do you think about antineoplastons ?
We have found, uh, very interesting, uh, molecular pathways targets that antineoplaston is targeting, working very effectively to kill the cells, um, probably better than many other drugs, because, um, it has multiple targets, and so attacks the cells from many different angles, and is able to kill the cancer cells, more effectively
So, can I ask you, how did you come to work in, th, the Burzynski
the institution ?
Through an advertisement, it was
My position was advertised
I started 8 years ago, and
So ok
So it was advertised
Mhmm
So when you applied for the job, were you aware of the controversy of, (comments to self: learn to talk)
So when, when did you find out ?
Uh, eh, as soon as I joined (laughing)
Oh yeah ?
Few months later
I thought, it’s easy to find
It’s not hard
Of course
It’s not even, uh
Wha, what about any of you other colleagues, that prior to coming here ?
I mean, did they say anything to you, like, you know ?
Well they brought something up
(?) in, uh, uh, being there for him during this trial, my boss, my previous boss was here before me
Uh, so I have a very open picture of it, and it doesn’t bother me
He came up against it and won
Yeah
So that’s a good thing
An, and why do you think, it kinda hasn’t been, kinda lost the word, hasn’t taken off, you know ?
Has the scientific community hasn’t really embraced ?
Well anything that is non-traditional always, you know, takes its own time to get to people
Besides, the traditionalists don’t want it coming out because, uh, it affects, a lot of other things, um, finance, in, in the big Pharma
Right
that is affected by this
So, um, if it, if it were, um, a medicine already with another big company, it probably would already be out in the market by now, but, uh, it’s because it’s one man’s show
He’s fighting against, uh, traditional medicine, big, big centers like M.D. Anderson right here in Houston
So, most people want to believe, uh, what the other doctors, the oncologists, are telling them, because that’s what everybody does
So very few filter out of that and come looking for him, because they’ve lost hope there, and they’ve tried everything else, and they come because; which I wish they wouldn’t, come here as a last resort, you know
Mmm
and, by then, sometimes, uh, enough damage has been done that is sometimes even he cannot cure
It’s not magic
It’s
There’s a logic to the way the medicine works
The science behind it is not, it’s not just a magic bullet
So, and you have to target it at the right time
Catch cancer at the right time
So I have a, friend of my mother’s at home, whose spent, her whole, academic career, 20, 30 years, researching, astrocytomas
Mhmm
And, uh, you know, I did my research, and, I was no doubt that we were coming here
No question
My, my research was more based on people
Excuse me
On people
Talking to people who had been treated, and seeing the results, and then looking at the research afterwards, and she was just saying that “I’ve spent all my years, research, and research, and research, I can’t find anything, that validates, this, this treatment”
Now I’m not asking you to comment on what she said, but,
No, validation, validation basically means, uh, proof in scientific community
If you’re not accepted into the scientific community, you’re not going to be able to present that truth, and we go and present at conferences all the time, eh, when it comes to publishing papers, uh, we haven’t been very successful Dr. Burzynski has published, uh, a lot of data of his patients
So it’s out there
Yeah
If you, if you want to believe it, and you’re looking for it, you’ll find it
Yeah
It’s just, um, it’s not in the mainstream places, because it gets rejected out of there
Um, it’ll probably take some time to get into those spots where everybody else is publishing, and everybody else is talking about it, but it doesn’t mean that it’s not true
So obviously you’re here on a daily basis
So when was the 1st
Last 8years
So the last 8 years
When was the 1st time you actually saw, was it in the dish where you actually saw it ?
Well we see it, we’ve seen it for years before I came here
Yeah, but when was the 1st time you saw it, when you came here yourself and you saw ?
Well we see it every day
Um, we have cancer cells in the lab, that we treat, with the medicine
We see them dying
We see them undergoing a necrosis, which is the cancer deaths, pathway, that most people study and talk about
So
So, it’s happening, it’s happening in front of our eyes everyday
So, we have proof for it
you know (?)
We just have to get it out there, and there’s a, there’s a system to all that
Um
and were trying to, get it through the system, and get it out there
So what, when you 1st realized there is something here, did you not just feel like just shouting from the rooftops and telling everybody?
Well I wasn’t the one who discovered
He did, in the ’80’s
Yeah
and since then he’s been shouting from the rooftop
It’s just, nobody would listen to him
Yeah, yeah
So, you know, we’re just doing the, uh, actually it’s backwards
People usually do, uh, pre-clinical research 1st, because the medicine
Mhmm
goes out and to the patients, and we, we are kind of doing it, the other way around
He already has patient data
He’s been treating people
on this
People, survivors walking around, to tell the story, and now we are being made to understand how it works in the cells
So, it’s, it’s kinda doing, the research, after the trials
Just tell me
One more question
What’s it like
How would you describe Dr. Burzynski?
I admire his, uh, passion, for what he does
He truly believes in what he does, and to me that’s, that’s a big thing
If you don’t believe in yourself, then nobody else will, and, his memory
He, he has tremendous memory, and, uh, uh, quick thinking
He’s able to piece together stuff, uh, research articles, papers, put together puzzle, come up with a theory
He does that every day, every time I meet him it’s, it’s interesting to me to see how his brain works
you say, in, in the purest sense, he’s a scientist
I think he’s a doctor 1st, but a doctor who’s very, very interested in science, and that’s an important thing, because a lot of, uh, doctors don’t care about the research, and he does
I think, I think his primary aim is to treat patients, mostly
So if there were any type of skeptic, research scientist out there, what would you say to them about what goes on here?
We do, we do, everything that happens in any other lab, anywhere else
I went to school at Houston, ah, so, I know exactly how the labs work
We do exactly what they do
Yeah
Um, we try to write up our papers, and send them to the journals, just like everybody else does
Uh, present at conferences
We try to get our data out there
Um, we’re trying to do our best, just the way everyone else is
I, I suppise trying to do your best it, it, it’s fascinating because you actually have something
Yeah
that really, really does work
Mhmm
I mean, it’s a cure, right ?
We believe it is
It’s a cure for cancer
Not for all cancers
I actually asked Dr. Burzynski
Mhmm
I filmed him the other day and said to him, why do you, specialize in brain tumors ?
Mhmm
Do you know what his answer was ?
What was it ?
He said it’s because it’s the most difficult type of cancer
Well it is if, if you think about it
I don’t think there are many doctors who claim to have survivors, eh, at least in the numbers that he has, to present
Yeah
and, um, I hear that at conferences too when we, were standing around, they will look at the slides, eh, eh, which is a tumor, and they will say: “Well that’s not a tumor,” ye, “it’s just necrosis
It’s just a patch on the skin, and you just cured nothing, and”, uh, all the, “the patient was probably cured from, the therapy that he took elsewhere, you know, the radiation he got 10 years ago”
“That’s probably what cured him,” but, you know, th, those kind of patients will be rejected from other, hospitals, don’t survive, that far enough to, to tell a story
So what is it ?
Just people living in denial ?
Is it fear ?
Is it ?
Fear or denial
I’m going to do what everybody else does
Why, why should I go out and do something different, here ?
Yeah (?)
And, and lastly, you know the, the power the pharmaceutical companies have
Well of course
I mean, but I’m nobody to, comment about that
Yeah, yeah
You know
There’s, there’s a lot going on behind the scenes that we are not even aware of, but this is just what, um, my experience is, when I talk to other doctors at meetings and conferences, and they, you’re immediately dismissed as, oh, you know: “What you’re going to say doesn’t really make any sense because you work for, Dr.”
His name has been tarnished
——————————————————————
There’s a lot more, to that, than just, people playing politics, this, this, a whole lot of stuff going on behind there
So, I don’t think it’s, it’s (supression ?) as much, it’s just trying to tell your story, uh, so that somebody would listen and accept it, uh, maybe using, the right channels, going, presenting it in a different way, make it more convincing
All that, would help
So if it, if it was you, in his position, would you not have just given up ?
Or would you
Oh, definitely
We all talk about it all the time, that the amount of determination that he has, most people, would back off and leave, but like I said, he believes in what he does, and that’s what keeps him going
Yeah
As far as publishing is concerned, ’cause a lot of scientist want to see
We’ve tried
We, we, don’t get past the initial screening
We repeatedly send it back to other journals and that’s the process I keep doing all the time
Comes back, I send it back to another journal
Hopefully, one day it will get it
So, let, let, let, let me get this straight, ok ?
You write articles, right ?
Papers
Papers
Mhmm
and you submit them to, medical journals
Mhmm
and then what happens ?
They come back
Why do they come back ?
Sometimes, um, if they get to reviewers, uh, it’s not enough data, or, which I understand
We can work on changing, modifying papers, but, many times they come back, without any reason
They just get rejected, at the 1st, screen itself
So they come back without any reason
And why do you feel that is, in your own humble opinion ?
Wha ? (laughing) not humble opinion
It’s, it’s hard, um, publishing is a tricky game, you know ?
You have to publish once, to get your name in there, and then, they might publish you again, but, uh, with the negative publicity that we already had, and most of the community would look at the name and say: “Oh we, we just don’t want to, want to even read it”
So, it, it doesn’t even get past the 1st screen, because they don’t turn, flip the 1st page even
Ok, so, what you’re saying is that you see things that are published in these journals
Oh yes
And, you see ?
very similar stuff
We try to, we try to do research that is on par, uh, with what everybody else is doing, as far as the techniques, the ana, the data analysis
We, we try to do everything which is the standard for, uh, the research community, but, doesn’t get past
Um, how frustrating must that be for you ?
Mmm, it is (laughing), it is
So do you feel like you’re a party, or you’re trying to get into a party, and knocking on the door, and no one’s letting you in ?
I feel like that at the conferences too because, um, sometimes they come up to your, poster presentations, and, um, they’ll ridicule you right there, while you’re standing there by your presentation
Ok, just last thing, because one of the things I heard
Mhmm
recently, which were, that, uh, there’s some evidence that Dr. Burzynski has from, from the phase 2 clinical trials, showing people who have, uh, glioblastomas who’ve been alive for 10 years
Mhmm
and there’s something there that they want to try and get published
Mhmm
What you’re saying is, that might never get published ?
Well, Dr. Burzynski’s case is different
He has published some of his patient data
I’m talking about the research, uh, the pre-clinical research, the cell culture data, the molecular data
Um, we haven’t had success getting that out, but, he has, he also faces rejection a lot, but he doe, he has managed to get ta, a few publications in
So how does it work ?
If, if you submit something they can
What’s the process ?
They can submit it back ?
That’s not, there’s a review
There’s a whole review board
Um, you can select your reviewers
It goes through couple of cycles of review before it’s, agreed that they will publish it
So,
And in case they say no to publishing it
You can
do you, can you take it somewhere else ?
Yeah, you can take it somewhere else, but, um, but it’s, the peer-reviewed journals that are the ones that you want to get into, you can publish whatever you want, ah, that doesn’t count
That’s why when, somebody who’s of, uh, any significance in science would not even look at those articles if they’re not in a peer-review journal
So, they have to get into a decent place to make a mark
Do you think that will happen ?
What do you think has to happen in order for ?
It’ll happen, in, in time
They can’t keep refusing you
We, we try again and again
——————————————————————
But in time they just want to, not focus on it, and just have’m, bring in more numbers, and keep doing this, and in the meantime keep treating, some number of patients
On, on, top of everything, my personal belief is, uh, brain tumors are not, uh, a money-raising factor, because it’s a, it’s a minority cancer
If this were treating, uh, mainstream cancers as they’re called, as, uh, breast cancer, maybe they would look at it more seriously, but the numbers, with the brain tumors, which is a good thing
I mean it’s a deadly cancer
You don’t want more people to have it, but, that puts it in the category of, um, you know, not so feasible, as far as the money-making
And so, the priority; even though, it’s the most vicious, and it should be looked at more seriously, but, it’s not the one that brings the big bucks
So
So, put it aside
So why would the FDA, haven’t closed him down then ?
Because they, they, uh, believe the data that he’s sending them so far, and they don’t have a valid point to, just say no, it doesn’t work, and put it away
They see effect, and so they want, more numbers, more data
Is it, it the phase 2 trial is finished ?
Mhmm
but they’re still accepting people ?
Yeah
on more like a special ?
Special basis, and, um, sometimes compassionate grounds
(compassion exception)
Uh, exceptions
That’s normal ?
Yes
So
(Yes I guess it is a funding issue ?)
Right
(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)
(?) and that’s stalling
(even more, millions dol, millions of dollars, to go through the 3rd phase of clinical trials, and)
(?)
(he’s a single doctor
It’s a 1st case)
Yeah
(probably in American history)
It is
(that single doctor is trying, to get a his job)
Self-funded
(approval
Self-funded
Whatever you’ve seen on that plant, everything came out of his practice
So he was the one who funded, literally the, the, research and development phase, but those installation, operation, all this big plant was built ?)
Yes, ’cause, uh,
(private)
one of the things I hear a lot, I’ve heard slot in the U.K. is that: “Why is he charging people for clinical trials ?
Well, uh, how else would you run this place ?
Exactly
How will you run this place, and how else will people be on the trial, because
Right
you know, there’s no pharmaceutical company involved here, right ?
There’s nothing
Nothing
It’s all out of his pocket
Every single bit
So
And what is stalling (?) is (?) again is, is funds
Money
Yeah, I also heard that the phase 3 they wanna do radiotherapy with, with it
Mmm
Hopefully, that will not be the case, but
we’re trying to
I think, uh, he is trying to fight against that, but, the FDA is the FDA, so
And what do you think about this case, he’s now got coming up in April ?
You know, he’s got this court case
Well there’s always something
Yeah (laughing)
He, he’s won before, so
Yeah
Do you think he needs the support, do you think he feels the support from, from all of you ?
I think so, for sure
(Oh, absolutely)
Yeah
Nobody forced us to work here
(Ah-hah)
Yeah
We get paid, but, you know
I could always look for another job if I needed to (laugh)
Yeah
So would you stay here because you really believe in what’s going on here ?
(?)
(Yes, that’s one thing that’s unique about our operation, and I’m talking about this location is, uh, whoever joined the company; and we have a guys who joined the company in the 80’s, 90’s
They stay with the company
Turnover is zero)
Yeah
(Joined the company
Stays with the company
It’s a challenge)
Yeah
(It’s a (?) challenge for us)
======================================
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 –
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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!
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====================================== [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
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Didymus Judas Thomas' Hipocritical Oath Blog 