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
This is our the best and the dearest, uh, patient who came to our clinic 20
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2
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2 years ago
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22 years ago
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and she was in the, she came with Hodgkin lymphoma, and a stage 4, and she didn’t have good, uh, prognosis
How long, did they tell you
—————————————————————— They told me that I was gonna die, of non-Hodgkins lymphoma
That I had a fatal disease
They would treat me for awhile with, uh, chemotherapy and radiation, um, a bone marrow transplant, and, um, we, they, we would see what would happen, but no cure Not a cure at all
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So
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That was 22 years ago
Um, I thank God everyday that I found Dr. Burzynski’s clinic, and Dr. Burzynski and his staff
Um, I was on his treatment for, um, 3 months when this huge tumor on the side of my neck started to reduce and finally disappeared
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So we adopted her as our, uh, family
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(laughs)
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Yeah
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and now, she is our family member, and many others
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So tell me, uh, how did you find out about Dr. Burzynski?
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I was in a cancer support group, and, uh, one of the ladies in there said, you know, you have non-Hodgkins lymphoma
There’s a doctor in Houston whose been treating it with very good results
You should go and check it out
Which I went back home to my husband and said: “There’s Dr. Burzynski in Houston, Texas, and he’s having good results,” and, ah, Steve said: “You know, I’ve heard of this doctor
You know, I wrote his name down”
He’d heard about him
Wrote his name down for future use, and I think about, uh, the next couple of days we were in Houston, and we got to the clinic and I just felt I was in the right place
Everybody there
It was
The feeling was so different than being at a UCLA or a USC or Dana Farber
It was just
I knew immediately I was in the right place, and I met Dr. Burzynski
Well first of all Dr. Barbara came out and hugged me, and, uh, it was, it was so wonderful and I’ll never forget the feeling of, of, uh, my first walk into the Burzynski Clinic
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So tell me, what did, uh, any, did, did you have an oncologist at home and tell them that you were coming here ?
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Yeah, we did
Um, uh, I had an oncologist at UCLA who was a lymphoma specialist, and he was the one that told me I would die of the disease
Um, when we told him that we were going to see Dr. Burzynski, he wasn’t, uh, overjoyed, to say the least, and he told us very negative things and, uh, but I thought, he wasn’t offering me anything, and, uh, when I did get to the Burzynski Clinic, Dr. Burzynski said to me: “I think I can help you,” he said
He didn’t
He didn’t tell me, he was going to cure me
He didn’t
He just said: “I think I can help you,” and, it was non-toxic, and the, um, conventional medicine was offering me high-dose chemotherapy, radiation, and in fact, in mu, as much radiation as people who were, uh, within one mile of ground zero at Hiroshima, and, and they were going to bring me as close to death as possible, and then, rescue me
Uh, and then Dr. Burzynski was going to do this and actually have, where actually I would have hope of a cure, non-toxically
My hair never fell out
I felt well
Um, I lead my normal life
I drove my kids to school
I cleaned the house
Whatever
You know
It was
It’s a wonderful treatment
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So, at what point did you realize, I’m free of cancer ?
Do you remember that point of ?
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Uh, well I remember the point
I remember it very well
Um, the, it
It’s so big
Um, I had, uh, several CAT scans
I had 2 CAT scans in a row
The first one that showed no cancer at all, and, um, I had them done at UCLA, and, um, and then I had a second one, 3 months later, and that one was, was absolutely clear
So, um, it was, it was an amazing feeling, and actually 48 hours was following me, because it was, it was a really a big story, um, you know Cancer throughout my body
No, no cancer at all and, and my medical records show, um, you look at my X-rays, my CAT scans, from starting Dr. Burzynski’s treatment, um, to approximately 9 months later
Reduction, reduction, reduction, until there was no cancer
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So what did, what did your oncologist say ?
Did you, did you go back to your oncologist and say: “You said I was gonna die”
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Uh, yes, we did that
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And what did he say ?
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And, and actually people would call him and a, people who were interested in Dr. Burzynski, and he would say: “Oh, she’s a spontaneous remission”
He would never accept the fact that I was treated, and cured by Dr. Burzynski, but my medical records prove it, and of, you know I, There are so many patients like me
I’m not the only one
So
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So ok, tell me
Let me ask you a couple more questions
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Mhmm
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What sort of a person do you think Dr. Burzynski is?
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Well aside from being the most wonderful, gentle, sensitive, caring doctor, and you don’t find many of those
I went to many doctors, while, while we were trying to find the answer
Many, and Dr. Burzynski is so above them
He, because he really makes you feel like a person, and that he cares, and, he’s also a genius
He, I know that he speaks about 8 languages
He’s an expert on the Bible
He, he just knows so much about everything
Um, I love to be in the room with him
He’s a very special man
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So, you recovered, and then, ’cause you, when did you set up the patient support group, and why did you do that ?
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Uh, actually my husband and I did that together, and it was during, um, the trials, uh, the Texas State Board started, in fact, I became a patient, and 2 months later, ah, he was brought to a hearing in front of the Texas State Medical Board, and so Steve and I, um, organized the patients to, um, be at that hearing to support Dr. B, ’cause he’d been going through this long before I became a patient, but, um, we wanted to show support, because I was already starting to fe, I was feeling better already
I was already seeing some reduction, and now my, the medicine was in jeopardy
I, It could be taken away from me at any time
So we decided to organize the patients and to show support, and all the patients wanted to help, a, uh, obviously
So, um, we’d go to every hearing, every, uh, the trial, we were there every day, um, and we would, patients would march in front of the court building, um,
It was, it was really a sight
An unbelievable sight
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And why do you think that he was treated the way that he was treated ?
Why do you think they wanted to take him down ?
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I think it’s because
There’s many reasons
I think the main reason is because what Dr. Burzynski does is making what all other conventional doctors are doing wrong, because chemotherapy is not the answer Chemotherapy makes people sick, and, uh, most of the time it does not cure people
Um, all that poison and radiation
There’s gotta be a better way, and there is a better way Dr. Burzynski has found it
I was sick
I had cancer 22 years ago
Um, my hair never fell out, and, uh, it was a treatment that I was grateful to be on every day
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So how many patients have you come in contact with that Dr. Burzynski
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Hundreds
Hundreds, and as you say by my patient group web-site
Um, I think I have about 90 stories on there now, and there are many more, because, um, I haven’t been able to get in touch with everybody, but over the years, uh, people give me their stories
Sometimes people will call me, um, but we, we are a patient group because we, we’ve all been helped or cured by Dr. Burzynski, and we, we want everybody to have access to this treatment
Steve actually had the chance to ask one of, uh, one of the prosecutors, um, at the trial, that exact question: “What would you do,” and he was prosecuting Dr. Burzynski, and he actually said: “I’d be first in line”
So, once you know the whole story, and you know the science, and you, especially if you do the research, um, you, you can come to the truth, and the truth is, Dr. Burzynski, has cured cancer
He cured me
I’ve been in remission for, in remission, for, uh, 22 years, and that’s a cure, and, uh, he could help so many, many, many more people
The, he has breast cancer patients now that are, that are doing so well
He has many
I just talked to an ovarian cancer patient
He has, um, all, all different types of cancers
What he needs is funding from our government
Um, all other doctors and, and, um, institutions, they get ah, mu, get so much money from the government Dr. Burzynski doesn’t get one penny
If we could just think
If, d, if the government would just fund Dr. Burzynski, he could have a cure for all cancers
I believe that with all my heart, and somehow, some day this has to happen
—————————————————————— The Sceptics (10:37)
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Yeah, just tell me what this whole kind of skeptic movement
You do any research on Dr. Burzynski there’s a few things
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Yes
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that always come up
This guy Saul
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Yeah
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Mmm
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and some other stuff
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Yeah
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So just tell me
What’s that all about and where did that all come from ?
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It stems from, uh, a lawsuit that was filed against, uh, Dr. Burzynski
Actually it was, uh, an insurance company, that didn’t wanna pay for, uh, for the treatment
A particular patient had been treated here in Texas, uh, was put into remission
Was successfully treated and then it turns out the insurance company did not wanna pay for it, so they brought in these people
These quote unquote experts Cancer experts of, you know, rather dubious backgrounds
This is all that they do, is they look for ways to demean people
They look for ways to blacken their reputation
They ultimately became a group known as Quack watch, and these were brought in as the expert witnesses to say that this is not an approved treatment, albeit, was not true
They said the treatment didn’t work and clearly it did, and, uh, they have since gotten funding from insurance companies, from the government, private funding, and they go around to debunk things that are against mainstream, um, medicine, and, uh, their, their support comes from the insurance company and from the pharmaceutical companies who benefit from, from their work, and, uh, it expanded
Expanded all over the world to, uh, they’re in the United States, they’re in the U.K., they’re in Australia, and, uh, they have a very big presence
When the internet came into being they, you know, they went viral with this kind of stuff
So when you type in Burzynski, uh, a lot of the negative comes up first
So that’s the first thing you see is all this negative stuff, and it’s all hearsay
None of it has any basis in fact
It’s all lies
Um, you know, he, Dr. Burzynski never did anything illegal ever, and it was all based on, on very questionable legal grounds that he was ever sued, that he was, that any case was ever brought against him by the FDA or the Texas Medical Board, and all of those cases failed
They never held up to scrutiny
They all failed, and here Dr. Burzynski is today, and he’s thriving, and people come here from all over the world to be treated
Many are cured of their cancers, and, uh, all of these people in the Quack watch are gone
Uh, Saul Green has passed away
Uh, I don’t wish him ill, but I’m glad he’s not here, thank you, and all of these other people are gone and they’re not thriving, and they’re just like, you know, they’re like bacteria or like fungus under rocks, and when you shine a light on them, they can’t hold up to the scrutiny
The real light is here
The real truth is here in Houston at the Burzynski Clinic
—————————————————————— Thoughts onDr. Burzynski(13:46)
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What do you think of Dr. Burzynski, yourself ?
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I, I, I think Mary Jo’s pretty much summed it up
Uh, I, am of course
It, it, it’s not an unbiased opinion
It can’t be
He’s the man that saved my wife
Uh, she was cast off, um, as, as, as an incurable
She was told time and time again, not just by her on, oncologist at UCLA, Dr. Peter Rosen, but we went all over the country
We went to USC in, University of Southern California, UCLA, Stanford Medical, Dana-Farber; which is associated with Harvard, uh, in, uh, Boston, and everywhere we went, she was told: “There’s no hope”
“You’re gonna die”
“It’s just a matter of time”
“We have to see how long, how long it’s gonna take”
Um, against my better wishes, we came to the Burzynski Clinic, and she said: “I’m starting today,” and I said: “Don’t you think we should go back and discuss with Dr. Rosen at UCLA ?
She said: “No, they have nothing to offer me”
She was that brave, and we started that day, and we’ve never looked, we’ve never looked back
So to ask me about what I think about Dr. Burzynski, when my wife was told she was gonna die, and I was already making plans for how am I going to take care of my children without Mary Jo; my life partner, and he saved her life, I’m not gonna give you unbiased
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Mhmm
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an unbiased opinion of how I feel about the man
There’s probably nobody, that I have greater love and greater respect for, uh, in, in the whole world, and, uh, to add about how, how smart, how intelligent this man is, ah, expert on, on history as Barbara was saying
Expert on religion
He’s an expert on mushrooms
He knows more about mushrooms than any 10 mushroom experts in the world
Bees
He knows about bees
Who cares about bees, but he knows everything, because bees happen to be a rich production source of antineoplastons
Who knew ? Dr. Burzynski knew, and that’s why we need to listen to him
We as a society
The world needs to listen to this man
—————————————————————— Conventional Cancer Treatment and The FDA (16:05)
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When you put some critical thought, critical analysis, you find that chemotherapy initially works
What it is, it’s a good, the first time around it’s a good tumor shrinking, they’re good tumor shrinking agents, but over the long run they create so many problems that eventually, the tumor becomes, the cells become resistant and the tumor takes over, or, if it is successful in shrinking the tumor to, to a, a size where the patient can survive, what happens after that is there’s a secondary cancer that’s created by the chemotherapy, with very few exceptions Testicular cancer is one exception where it works
Some childhood leukemia’s they’ve had some great success with chemotherapy, but by in large it’s a failed modality, and the side effects are so bad as, as to be called horrific, uh, is how I would describe them from what I’ve seen in, in my family and in my friends, and my associates that’ve had to undergo it
So why do we allow that, when something like antineoplastons and Burzynski’s treatment, totally non-toxic, working with the body, allowing you to lead a normal life, and on it statistically for the number of people that have been treated, uh, compared to the number of people that have walked out of here in remission, or cured after 5 years; whatever definition you wanna use, we don’t allow that
We look at that as, uh, conventional medicine looks at like that as, looks at that as some sort of quackery
This is, this is, uh, critical thinking and science turned on its head, and it doesn’t make sense, and it goes back to what I was saying before
Why it doesn’t make sense, because there’s entrenched financial interests, and there’s a paradigm that says we do for cancer, we do chemotherapy, we do radiation, we do surgery, and that’s it
Anything else is not acceptable, because it goes against the paradigm
In the bureaucracy we know as the FDA
We’ve been fighting them for so long and they’ve been described as “The B Team” “The B Team” is,that they be here when you come in and you start complaining, your problem starts, they be here, and when you decide to quit complaining because you’ve beat your head against the wall for so many years, they still be here (laugh)
So it’s “The B Team”
They’re bureaucrats
This is what they do
There, they have a certain set of tasks
Certain things that they’re tasked with
Protection of the food and drug supply of the United States, whatever that means
Whatever they deem it to mean
Whatever they decide it means
That’s what they’re gonna do, and it’s pretty hard to fight that
It’s pretty hard, unless you have a political, unless you have a, a, a, a political, ah, constituency, and you can put a lot of pressure on them
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So
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and that’s the only way
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So what’s the answer ?
What will, uh
How will Dr. Burzynski prevail ?
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Ultimately, in, in my, in my, in my view, the real tragedy is, is that he’s not going to prevail here in the United States
It’s going to be extremely difficult
It’s an uphill battle that, knowing Dr. Burzynski, he’s gonna keep fighting it, uh, and, and he’ll keep fighting that battle, but the real opportunity for him is to, uh, move this product and license it overseas, and, uh, other countries are interested
Other countries are more open, uh, to new modalities
They’re not entrenched, uh, and don’t have the financial, uh, interests, the, that are, the entrenched financial interests like we do here, like chemotherapy and, and, uh, radiation therapy, and I think that’s where ultimately we as Americans, as sad as it is, are going to have to go overseas to be treated and to get this medication
The FDA is so capricious in their decision-making, and in their exception granting, uh, that if Pat had AIDS, and this was anti-AIDS medication; proven or not or only with limited, uh, proven efficaciousness, uh, and proven limited proof that it was somewhat non-toxic, she would be able to get approval like that
The FDA has taken a drug approval process that generally takes anywhere from 10 to 15 years, and where there is political, successful political pressure applied, they have reduced that down to some cases 4 to 8 months as in the case of the anti-HIV drugs, and that’s because there is a very strong, very powerful political lobby in Washington, and throughout the country, and they have been able to apply pressure at key points in, uh, Congress Congress puts that pressure on the FDA, says: “C’mon let’s get the ball forward
These are voting people
We have millions of people in this country with HIV who are compacted together and make a viable political force
Let’s move forward”
In the case of multiple-myeloma
In the case of these cancers or these people that wanna be treated, who have failed all conventional therapy, and wanna be treated by Dr. Burzynski with something that we know works
Something that is, is non-toxic, they, they don’t have
We’re not a viable political force
We’re not important to the Washington bureaucrats, to the Washington lawmakers
So nothing gets done, and these exceptions for the use of antineoplastons are not granted, and that’s, that’s the sad truth
======================================
Steve and Mary Jo Siegel
January 2012
22:01
11/9/2012
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My name is Doug Olson
I’m from Nebraska
Western Nebraska
And, uh, my mother has been diagnosed with pancreatic cancer
So, we, uh, middle of November, now this is first of, first of the year, eh, but in the middle of November her weight, she was losing weight, you know
She was suffering from indigestion and, and stomach pain, and so we started to have her checked, uh, for problems with her stomach for ulcers and that kind of thing, and all that proved negative, and they put her on an ulcer medicine anyway, thinking that maybe that would solve the inflammation in her stomach, and, uh, then we decided that we (?) better see another physician, and so we did that, and they then ultra sounded and then CAT scanned and found that she had tumors in her pancreas and in her liver
Uh, many years ago, back in, in the late 70’s, my parents had been involved with, with the cancer, uh, subject in regards to my father’s sister, and then his cousin
He started researching cancer and cancer treatments when his sister passed away, and then, uh, they got in contact with a doctor in Orden, Nebraska, that treated cancer patients with Laetrile, and he also did other, not so ordinary things
He did duculation therapy
Uh, a number of things that were really treatments for the disease rather than just treatments for the symptoms, and, uh, during that time, dad testified at the state legislature; they were trying to work against Dr. Miller’s license
This was the Dr. Miller in Orden, and, uh, so dad testified on, on his behalf
Uh, dad’s cousin was, uh, a patient of his, and she had a brain tumor the size of a lemon, and Dr. Miller put her on, uh, Laetrile treatments on a, on a special diet and some things, uh
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And this was what, in the 70’s ?
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This was back in the, probably the late 70’s, and, so, when they
Well they cured her
She had been sent home from the Mayo Clinic Given 3 to 6 months to live, and, uh, they had, uh, burned with radiation and cobalt I believe is what they were treating her with at that time
Uh, they burned the, uh, nerves in her eyes so that her eyes crossed
Uh, they sent her home to die
They, uh
She was in a wheelchair
She was a young woman and she had a young child
Wasn’t able to hold that child, and so when my dad saw her, met her, she was in that condition
She was it, in the last 6 months of her life
Gave her a book about, uh, the subject, and told her about Dr. Miller, and her family
She then went to Dr. Miller to see if there was any help for her, and he, and he immediately put her on Laetrile treatment then and, and, uh, the interesting thing about it, looking at his doctor’s protocol; because I’ve come across his protocol, uh, Dr. Miller was also giving his patients antineoplastons, and
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Yeah, because we’ve got this thing here that you gave me
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Mhmm
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Just explain to me what this is
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This was his physician’s protocol, to list, uh, the different medicines a person should, should be on
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If they had cancer
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Uh, if they had cancer, and so, uh, this was given to another friend of ours, a friend of the family, uh, the folks that rented one of our properties, uh, the woman got a, a tumor as well, and this was given to her as part of the regimen she should follow, and she was given Laetrile injections, and then as soon as the injections, uh, were over they went then to pills as the size of the dosage went down, and when you got to pills you got to go home
So, uh, I remember speaking to her at the time
I had a
I was in high school, and I had a summer job with her husband, who was the county engineer
So, uh, we saw them all the time, and she told us, uh, the circumstances when, when she was allowed to come home
She was feeling strong
She said: “I haven’t felt better”
As a part of the diet and the things that, that they had her doing
She said she felt better than she had in many years
So she and her daughter, started a business in town in order to pay for the treatments, and, uh, she recovered
The tumor continued to shrink and shrink until it was nothing
Uh, what had been listed as inoperable, uh, after it shrunk halfway they decided, well maybe we can operate on you
Uh, we think it’s operable now
She said: “Why would I let you operate when what I’m doing is working”?
But, uh, she is alive yet today and in her mid-80’s and, uh, so, uh, when it came to my mother’s illness, we contacted her, and asked her how she’s doing, and she’s sent this protocol she’s been keeping all these years
Uh, as a result of my parents knowing Dr. Miller back when he was alive
He is, he has passed away, uh, 7 maybe years ago, and, uh, many years ago when they were taking chelation therapy from him, he had given my mother, uh, a flyer on Dr. Burzynski, and, uh, said if anything ever happens to you after I’m gone, this is the man to contact, and so we’ve had that flyer in a file for many years at my parents house, and so when mom got sick she immediately began digging that out and found
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So your mom immediately started thinking, well I need to find that leaflet
That’s what we were told to do
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Yes
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And did, and did she go and speak to an oncologist?
Did she say that she wanted to come here, or ?
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We had a local physician, who was not an oncologist, that had, that was the 2nd physician we, we consulted, that did the ultrasound and the CAT scan for her and, and they knew that she had tumors, and no we did not go to an on, oncologist from there
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Why ?
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because we knew that we did not want to take their treatments, uh, so we immediately contacted the clinic here in, in Houston, Texas, and, uh, we had to wait on, uh, certain things to be completed
CAT scans
Different things had to be done, and, and information had to be sent down here and examined, and then, uh, after a period of maybe 2 weeks, hassling with information, we were told that, yes, uh, we, they would accept her as a patient, and we were getting in towards the holidays at that time
Would we like to wait until the holidays were over, because Christmas
You know, there would be 5 days off for Christmas, uh, over a weekend and 5 days off for New Years over a weekend, and we would be down here in Houston over those times, but we elected to come anyway because we could get the treatment started right away
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Mhmm
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rather than to wait another month before starting treatments, and, uh, so they, uh, immediately put, put her on antineoplastons and, uh, they sent away the tissue samples to Arizona to have a CARIS test done, and determine what medications would be
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So did you have those results come back ?
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Yes, those results came back quicker than what we expected
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And wh, what did they show ?
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Well they, they show a, a list of treatments that are effective, and against it, and then a list of treatments actually that encourage it’s growth
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Yeah
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So you end up with a list of, uh, approximately 7 on each side
7 good
7 bad
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And these are all different cancer drugs
So what they’re looking at is all
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Yes
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is all the different cancer drugs, and which ones
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And whether we’ve got a, a thousand or 2 thousand different drugs that person might try, and, uh, so
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So the (?) for how to, to try a few of these chemotherapies, but in very small doses
Is that right ?
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There’s 2, 2 chemotherapies
One is an, is an oral chemotherapy that is, uh, quite mild in its side effects, and then, uh, there’s another much stronger one that was, uh, also one of th, the top 2, and, uh, the side effects for it are more varied and more violent, uh, if you will, and, uh, my mother’s had one treatment of that so far, and the treat, the side effects
She did, is suffering from side effects from that particular
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Yeah
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It’s Oxaliplatin, and, uh, some people have very violent side effects but she’s thankfully not had any violent side effects
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So why didn’t you go down the conventional road of having high-dosechemotherapy?
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Well, when you research the, uh, success rate, with pancreatic cancer, going the normal way, uh, or the normal, uh, road, the success rate is very, very small, and so you’re just guaranteeing, in my opinion, if, if the success rate is 5% or under, uh, you’re introducing yourself to a, a road to death, that’s very unpleasant
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Yeah
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You know, you just want to go home and make yourself very comfortable on painkillers and, and enjoy the rest of your life, uh, if that’s the, if that’s the road you’re planning to take
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Yeah
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Uh, that was our opinion, and so
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What do you think about all the resistance then of, of Dr. Burzynski and all of the kind of, uh, ?
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We have
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(?) people just calling him a
What’s the word ?
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Charlatan
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Charlatan
Yeah
Fraud
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Yes, we, uh, we have seen course, of course these things through our, our life
Dr. Miller
The whole Laetrile treatment thing was something that was, uh, thrown out
You know, it’s pretty well suppressed now
You can go to Mexico and get those treatments
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Why do you think they were, pushed aside ?
This Laetrile
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It’s
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What is Laetrile?
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Well Laetrile is a naturally occurring, uh, substance that you find in some of our foods
It’s, they call it B17 although, vitamin B17, although there’s some discussion as to whether it’s really a vitamin
Another name for it is Amygdalin
—————————————————————— Amygdalin
Yeah
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Uh, it’s found in peach pits and apricot pits in high levels but there’s a number of other foods that you find it in
Uh, it, it,
I’m not sure, whether this is 100% accurate, but my understanding of it is it’s associated with, with cyanide, and it would be, uh, like an encapsulated cyanide, that as it travels through your body, the cyanide portion, um, does not become available to your body until it becomes in, uh, associated with a cancer cell
——————————————————————
Yeah
——————————————————————
and the cancer cells attack the outer shell of that molecule, and the cyanide becomes, uh, uh, available then, and it kills the cancer cell that’s right there
So it was apparently a very nontoxic substance
Uh, you have regulated dosages
I mean, it seems to me interesting, uh, when a doctor prescribes a dose of chemotherapy, uh, there’s nothing that I can think of much more toxic than a, than a chemotherapy drug, and certainly they’ll kill you if they don’t, uh, give you the right dosage, but it was not seemed, deemed accessible that a byproduct of food; which a doctor could regulate the dosage of as well, could be used as a transfer, cancer treatment
——————————————————————
Yeah
——————————————————————
Uh, and we’ve seen things in the past, as well
When I was a, a very young child, I had a great aunt, that, uh, I was not even aware; at the time I was very young, she was traveling to Texas and getting treatments
Uh, one of them was called the Hoxsey treatment and, uh, she was living a very comfortable life on treatments that she got there
There were 2 treatments in Texas at that time, that, uh, were available
The FDA would come in and raid the clinics, and make just life miserable for them
They got one of them closed down, and that was the one that my great aunt was on, and that treatment was, was pills that she could take, uh, and live quite comfortably, in Nebraska
Once they closed that clinic down, then she had to go down, uh, to the other clinic in Texas, which was a supplement that was a liquid that tasted bad, and she had to make frequent trips, at that point, but still, as long as she could get that treatment she was comfortable and, and lived a normal life
A productive life
Uh, we knew her as our great aunt and, and didn’t even know her, uh, uh, that there was a health problem and, uh, but then the FDA got that clinic closed down
So, as soon as she lost access to those, her treatments, then her cancer which, uh, was no longer able to be controlled, came back strong and, and she died
So, uh, the family had been, had access to this knowledge and this, the FDA’s games with cancer treatments for many years
Um, I’m also married to, a, a gal whose father did blood research as a, he was a Ph.D and worked in university hospitals, in blood research all of his life
He, he discovered a blood protein that was associated with cancer
Uh, it was actually associated more with good health, maybe than you could say with cancer, but he discovered a, a blood coagulation protein, uh, or associated with blood coagulation that would, that could be used as a flag or a test, to see whether a person was healthy or not
Uh, as they applied it to patients in these hospitals, during their research trials, they found that this protein was an indicator whether a person had cancer or thrombosis
Uh, 2 of the very largest killers, and this protein, if present in high enough amounts in our blood, uh, was an indicator that you were healthy, and as the protein’s amount, uh, declined, then it was an indicator that something was wrong, and below a certain amount you knew something was wrong
You better be taking further testing
——————————————————————
Mhmm
——————————————————————
to find out what your problem was
Uh, that has run into resistance
Uh, that (?) has not been approved by the FDA, and, uh, th, our family’s experiences with cancer treatments, cancer drugs, as they’re affected by the FDA, we have determined by our opinion that, uh, it’s, un, unless there’s something that’s going to generate a, a lot of capital, and then a lot of tax money for the Federal Government, the FDA’s not very interested in it
——————————————————————
Yeah
——————————————————————
Uh, so, cynical attitude, but evidence bears it out
——————————————————————
Yeah
——————————————————————
and so we remain cynical until so, until something proves
——————————————————————
Yeah, absolutely
So this is this doctor in, uh, in the 70’s
This is information that he provided
——————————————————————
Yes
——————————————————————
and you can see here that he is obviously, antineoplastic enzymes
See, here obviously
Do you think he meant Dr. Burzynski?
He just knew of him ?
You have no idea ?
——————————————————————
I have no idea
——————————————————————
He was obviously a fan, if he was someone that eventually said
He said it to you
Did you say he said it to your mum or to your dad?
——————————————————————
To my mom
Probably to mom and dad
——————————————————————
Yeah
——————————————————————
Uh, my mom was the record keeper, and so, she kept the flyer
——————————————————————
Yeah
——————————————————————
but they both took, uh, the, uh, the therapy from, uh, well, the blood therapy
I mentioned it earlier
Suddenly the name’s gone away
——————————————————————
Yeah
——————————————————————
but, uh
——————————————————————
That’s ok
——————————————————————
So
——————————————————————
So what about, um
You know, one of the barriers that we had is, when we spoke to oncologists, they just said, no, you mustn’t come to see this guy
His work isn’t peer-reviewed
He’s a charlatan
Why, why do you think they would say that ?
What
I mean I’m surprised, that these oncologists don’t actually come here, to actually see what, what’s going on
So your opinion about that ?
——————————————————————
My opinion is, that physicians are, very much, tied up, with large pharmaceutical corporations
Uh, I spoke with my father-in-law
My father-in-law had to have research done in, in his Ph.D work, and he had to get cooperation from hospitals, from doctors, and, uh, all of these organizations in order to have the research done that he needed done, ’cause past his lab, when he wants to introduce research, onto a patients, uh, live blood, and he needs to collect specimens from patients, then a whole ‘nother group of, uh, set of authorizations have to be signed and, and he being a Ph.D working with the medical profession all his life, he knew how tied up the medical profession is, by, generally by M.D.’s, that control the money flow, uh, in the medical profession
Ph.D’s do the research, but they have to apply for grants, and typically the grants are controlled by M.D.’s, and so if an M.D. Decides that your, your particular research is either applicable to, uh, something they think will make a lot of money, or it’s the, the quote, uh, popular, popular item of the day
——————————————————————
Yeah
——————————————————————
Politically correct, you name it, then you’re going to get funded
Otherwise, uh, my father-in-law noticed at different times, his research had to be funded out of his own pocket, and at other times, it looked like, it was something that doctors would like, and so they would, he would get funding, but I think that, ah, as he commented, any doctor, coming out of med school, has been contacted by a pharmaceutical company, and has probably signed a contract, that when that pharmaceutical company wants to test a drug, or test an item, that that medical, uh, doctor, will be accessible to them, to test their products
So, with the number of pharmaceutical companies that you have, and all of them recruiting M.D.’s as they come out of med school, and saying, you know, would you be part of our group, you end up under contract with the large pharmaceutical companies
——————————————————————
Mhmm
——————————————————————
and if, if 90% of the doctors are under contract with pharmaceutical companies, to, uh, to cooperate with their drug testing, then large Pharma, has control of virtually all doctors, and so, uh, uh, if you have large Pharma saying, we don’t want to see a cancer cure, that we’re not in control of, we don’t want to see something that makes curing disease cheap, and easy, and food related, then you’re not gonna
They’re going to put the word out to all their doctors: Don’t have any wo, don’t have anything to do with this
Uh, they can come up with, some written material for their, their doctors to read
They send them the evidence
——————————————————————
Mmm
——————————————————————
It may be accurate
It may not be very accurate, and, uh, but it’s just a smear campaign to destroy reputations so that they don’t get hurt financially
——————————————————————
Mhmm
——————————————————————
and, uh, so, uh, that’s the reason I believe
You know, most of these doctors, they don’t have the time, or the expertise to do the research themselves
They can’t read everything, and so when someone they trust, or someone that they’re financially, uh, obligated to, comes down and says: Here’s the stand that we want you to take, and it’s against this particular treatment, or against this doctor, they do what they’re told
——————————————————————
Yeah
——————————————————————
They do what they know best
Uh, my father-in-law, for instance, was, uh, also involved as a professor in these med centers
He taught nutrition, and he said it’s always a, been amazing to me that you can get through med school, and never take a class on, on nutrition
So you can become an M.D., and not understand the value, of nutrition, to a person’s health
That’s a problem
Uh, he recognized it as a problem
I recognize it as a problem because I particularly believe that most of our ill health is because how we treat our bodies
What we eat
——————————————————————
Mhmm
——————————————————————
Whether we exercise or don’t
Whether we provide our body with a way to flush the poisons or not
Uh, healthy living, and if you don’t teach our medical profession, healthy living, how can they teach their patients
——————————————————————
Mhmm
——————————————————————
So this, this whole system is, is just flawed in some ways, and weak in other ways, and, uh, controlled, for the purposes of commerce, instead of the public
——————————————————————
Yeah
So you, you think it’s a good idea treating people as an individual and finding out what they need as opposed to like carpet bombing them ?
——————————————————————
Absolutely
When we understood the, the individualized approach, here at the Burzynski Clinic, that they would take where they would test the cancer cells, uh, against all of these treatments and all of these chemotherapy treatments and, and anything else that might be out there that would, would treat cancer, and come back with a, a individualized care approach to the individualized cells of cancer that my mother has, that’s when we knew that we had to come here
We wondered, and I’ve told my friends, and everybody wonders, that oughta be the standard approach everywhere
Why wouldn’t you test, every cancer, and see what it is that’s gonna treat it best ?
You, you tell me
======================================
Doug Olson chats with Pete Cohen
January 2011
25:00
11/9/2012
——————————————————————
—————————————————————— 2010 I was laying in on my couch; and I had been treated for cancer in the past, but evidentially reoccurrence, and I, I was so sick on my bed
Actually on the couch
I couldn’t get up
My neighbor called me, uh, and, uh, I couldn’t even, I had the phone next to me and I could answer it, but I think I was laying on the couch for about 2 days
Finally got a nurse over there to check my temperature, at 105.8
They rushed me to the hospital Didn’t even give me but a few days to live (laugh), and, uh, they wanted to treat me and do so forth, but my, uh, sister-in-law had been reading a little about the Burzynski Clinic
She gave me some information on it
There was a few other places that I was looking at, but I was felt lead to come here, and, uh, actually the doctors wouldn’t even allow me out of the hospital to come here They said I would never make it, and so, uh, my brother who insisted upon getting me out there
So I came out
Took a, a van
Took it
Came out here, and, uh, I couldn’t walk
Couldn’t hold a pencil in my hand
I could hardly sit up in a chair (laugh), much less anything else
And, uh, within, with just within a few weeks of, of some treatment I could actually get up and walk and so forth
Then as time went, I was able to walk a little more, and then I was able to drive, and now I’m being able to read and write and the whole thing, so, and as of today I just got my final report, and that final report, (?) the last report that I’ve actually, looked like there’s no active cancer at all
There’s some tumors left and some little shades here
Scar tissue
So, I’m continuing on, on the treatment, but so far, I thank God, and I’m still here, and, uh, gave me some extra time here
So I’m thankful
——————————————————————
Wow
So when were you first diagnosed with ?
—————————————————————— 2003 I was diagnosed with, uh, lymphoma
Uh, we were going in for heart repla, my 6th hernia operation (laugh) and the found it in my abdomen, and so they immediately took me to the, get a port and get me on the chemo and so forth, and, uh, the 1st chemo treatment I, I almost didn’t, I almost didn’t survive
I was rushed to the hospital
They, they didn’t expect me to make it the night
However, I did make it, and a couple times there were a couple problems there
Then I went through radiation and some, uh, some other treatment for about 2 or 3 years here
Some remission, uh
——————————————————————
And what was your health like during that time ?
——————————————————————
Uh, it was, my immune system was quite down
I was catching colds
I was getting pneumonia and things
Uh, not pneumonia but almost on the edge of it but always weak, and, uh, coming here, you know, it, it’s a lot different
It, its reach a little more compassionately
There’s a little bit more, uh, with not as much side effects and hardly as much side effects as, as, as the other treatments
Still been able to drive, fly, and everything else and, and, uh, so, uh, with the, I, I just find with the multi-approach that they have here, uh, you know, all the different ways they attack it, not just one or two different ways that should become standard, that doctors actually looked outside the box, and discovered things that, uh, uh, are, are just fantastic, and that’s one of the things
I like to do a lot of research, and I just found, what I found here just clicked, and thank God I’m here today
So (laughing)
——————————————————————
Wow
So the 1st time you had, when you were diagnosed
—————————————————————— 2000
——————————————————————
2000 you had chemotherapy
——————————————————————
Yes Radiation treatment, and I had some Zebulon radiation treatment and so forth
——————————————————————
And then, how long were you kinda, well you can’t (?)
——————————————————————
Well (?), 2007 and then, uh, they wanted to do a bone marrow transplant, and they had to give me more dose of chemo which would have been stronger than the 1st, and I almost didn’t make it the 1st time
So I just
——————————————————————
You said “No”
——————————————————————
I said I just, I just won’t
I can’t do that
——————————————————————
And what did your oncologist say ?
——————————————————————
Uh, well, he didn’t have much of a choice
I didn’t really wanna take that route
He says “Well, there’s no other choice,” basically
——————————————————————
There’s nothing more we can do for you
——————————————————————
Well, no
That’s, that’s, that’s
——————————————————————
(?) go home and die
——————————————————————
Well, no
That was their
That was their next line of treatment, that, and that was it Bone marrow transplants, so forth, uh, which, you know, that’s within their perimeter, but here he treats it a little but more outside, with the different, different methods that he has, with the DNA and the, and the, uh, uh, treating the vascular part of the cell, uh, and the tumor, to choke off the supply of the nutrients, and so forth
Uh, just the whole multi-faceted approach, which actually, uh, which, which I, when I read it I said “Wow, here’s one that’s really on top of this thing,” and, and I know there’s been some, uh, uh, uh, envy sometimes from the (laughing) medical field, and that’s just natural of anything
I mean, I’ve been in real estate for years, and worked, uh, different ways that, you know, when you come up with a different method, a lot of people don’t want to change so easy
So I’m pretty familiar with that
Uh, so I just, I just have found that, uh, uh, just the overall way I’ve been treated here
It’s just, it’s just really refreshing
——————————————————————
So you, you, you came down here when, which, in?
—————————————————————— November 2010
——————————————————————
You came down (?)
——————————————————————
From Miami
From actually Fort Lauderdale
——————————————————————
Right
And, um, how soon, you said it was in a couple of weeks you were
——————————————————————
Yeah, within, within a few weeks I was actually starting to feel a bit better
I was starting to walk a bit more
I couldn’t even walk 10 feet without, you know, being so exhausted
Then I’d walk up to 50 feet
Then I’d walk up to 100 feet
Then I’d, by the time Christmas came around I flew back to Orlando to visit my sister and, uh, I was actually able to walk about 5 or 6 blocks to go to the grocery store and back
Got, got lost somewhere
——————————————————————
What was that like ?
You know, the realization that you were alive and you were well again ?
——————————————————————
Well, you know, uh, uh, again, uh, I was at the point before, and I have my, I have peace with my maker so I don’t know, one way, way I’d have gone if have been happy (?) but I,
——————————————————————
You were prepared to go
——————————————————————
but I’m prepared to go, but I have a young daughter and, uh, and a lot of family still here
So I didn’t wanna, I didn’t wanna go just yet (laughing)
So I’m thankful, with the treatment and by the grace of God I’m still here, and so, I look at, uh, uh, uh, you know, where I was at
Uh, I just, uh, realized the direction I was given to come out here, uh, and, uh, uh, uh, uh, uh, took advantage of it, and you see what, what took place
So I’m thankful
——————————————————————
And, and what, what treatment were you on when you 1st came here ?
——————————————————————
I wasn’t really on any treatment at the time
I, I, I, I wasn’t going to go back and do the bone marrow although it’s still an option and some people might wanna use it
I just wanted to do it different, way
——————————————————————
And what treatment did they put on, on, put you on when you came here ?
——————————————————————
Uh, well they gave me, I did take some infusions to get my health back into shape
I was, uh, uh, a little malnourished here and there, uh, they uh, uh, uh
I’m not really coherent really what was going on back then
——————————————————————
Yeah, right
——————————————————————
My brother, and sister-in-law, and my sister were all here with me
They were kinda keeping on top of things
I was kinda trying to just keep breathing
——————————————————————
Yeah
——————————————————————
(laughing)
——————————————————————
So, uh, and what about
——————————————————————
I vaguely remember some of the things I went through
I couldn’t even get out of bed in some instances, and my folks had to help me here and there
So
——————————————————————
What about now ?
——————————————————————
Uh, in, in regarding ?
——————————————————————
Your health now
What, what
——————————————————————
Well, uh, I, I, I feel, uh, I feel good
I mean, there, there’s still, uh
I mean I
I’m, uh
I used to play football years ago
I still have a lot of injuries from that and I’m still (laughing)
——————————————————————
Yeah
——————————————————————
I’m walking around with, but other than that I feel pretty good
I mean I, you know, I’m very thankful, I’m
I’ve been able to go out and do a number of things I hadn’t been able to do before
I spend time with my daughter as much as I can, and I’m very grateful for that
It makes a big difference
Uh
——————————————————————
Yeah, I bet
——————————————————————
Um, I just, uh, uh, I’m grateful for, for, you know, the way the doctors treat and the staff here
Uh, the I.V. nurses have just, I mean, uh, have just been phenomenal for me and I’m just, I’m very grateful for what they’ve done here
The staff
The welcoming committee
Everybody else
They keep on top of what’s going on
They know where you’re at
——————————————————————
So why do you think more people aren’t treated the way you’re treated as far as cancer’s concerned ?
——————————————————————
Well I, well I think there’s, uh, you know, uh
Anytime there’s anything new, there’s always a hesitation, uh, which in a way is reasonable, but when you begin to see it documented and coming forth to be true, then you pretty much know it’s more established, and so you, uh, are more willing to go in that direction and, uh, I, uh, what I went through before I didn’t really want to go through again, uh, with the chemo and the radiation and so forth
Uh, I just, uh, uh, you know, I almost didn’t last through it
So I, I was just looking for something different and this, this is where I came
So I’m, I’m thankful for it, uh, and I’ve mentioned it to a number of people, that have asked me, uh, over the course of the year, and I’ve, been able to talk to a number of people that have been here
I mean, I’ve met people from, uh, South Africa, Turkey, uh, Japan, ah, Australia
They’d all come over here for treatment
So, I mean, I’ve kept in contact with a number of them
So it’s really a joy to meet some of the other people treated successfully here
So, uh, yeah, uh, uh, I just,
Maybe, uh, you know, with the, with the set way that the medical field is, resistant in change, plus there’s a big, you know there’s, uh, big monetary issue about, you know, something comes in, it’s a little bit more efficient
You know, I don’t want to get into a lot of the motives, but I’m just grateful for what
——————————————————————
Mmm
——————————————————————
uh, they’ve done here for me, so, and it’s been successful so far, so I’m thankful
I know how the resistance is, when there’s something new that comes along, and what happens, uh, there may be a monetary motive to prevent, uh, you know, the, the, I hate to say that but we’re human, and so, you know, if, if, if, somebody comes up with something that’s a better way to treat, there’s all kinds of things that the person goes through their mind and their heart to what they’re thinking about, uh, you know, it’s kind of a threatening thing to the industry because they, they’re going to lose out on it
——————————————————————
Yeah
——————————————————————
if they’re not on top of that
So, it becomes a threat in a sense, and it shouldn’t be, but that’s human nature
A lot of times human nature comes out that way and you see it in anything
You see it in the medical field
You see it in, in the real estate field
You see it in the legal field
You see it in all kinds of things to where it can get into a self-fulfilling type of thing, when something comes along, that’s very profitable
It’s not necessarily always going to get in the forefront because it’s, there’s a lot of, uh, blocks and blockades in the way to prevent that from happening
Some, some of it good and some of it bad, and that’s just because of human motives, uh, of competition, so forth
So
======================================
Burzynski Patient Interview #1
January 2011
11:57
11/9/2012
——————————————————————
I’ve made no secret of how much I dispute David H. Gorski, a la “Orac”, the “self-proclaimed”brain cancer doctor and brain cancer researcher who has been treating readers with an unproven, unapproved, NOT ordinarychemotherapeutic agent since Jesus just left Chicago, bound for Nawlins, seemingly Elaphe longissimaslithering around, under, over, and past all attempts to intestate him and shut him up
Along the way, GorskGeek has become a hero to the cancer hackery industry, touted as the man who can cure incurable insomnia that science-based medicine can’t, even though his treatment, insolence, allegedly pop tarts isolated from bloopers and Uranus that normally keep insomnia in check in healthy people, are by any reasonable definition NOT ordinary chemotherapy
Indeed, they are toxic, with a number of side effects reported, the most common and dangerous of which being life-threatening hyperactivity (elevated sugar levels in the blood)
All you have to do is to type GorsGeek’s name into the search box of this blog, and you’ll find copious documentation of the abuses of patience, science, and critical trials perpetrated by “Orac” and the cult of impersonality that has evolved around him
He’s even acquired his very own film perpougendist, a credulous fellow named Bob Blaskiewicz, who has made 2 astoundingly bad hackumentaries that are nothing more than unabashed hagiographies of the brave maverick doctor curing insolence where no one else can
They’re chock full of misinformation, pseudononsense, spin, and obvious emotional manipulation, and the 2nd one, at least, was very popular
For the longest time, I’ve been hoping that major mainstream news organizations would take this story on
—————————————————————— GorskGeekclaims:
“Now, thanks to Liz Szabo at USA Today, we know from her article Doctor accused of selling false hope to families [1]:
“Yet hypernatremia is one of antineoplastons’ most common side effects, known to doctors for two decades”
—————————————————————— GorskGeek, of course, does NOT care to mention the 2 hypernatremia studies that I listed in the 2nd of my 3 critiques on USA TODAY’s“hatchet job” of Burzynski[2], because, as he accuses others:
THEY DO NOT FIT HIS NARRATIVE
—————————————————————— GorskGeek continues:
—————————————————————— “showed a blood sodium level of 205 millimoles per liter, a level that is typically fatal“
“I was astounded to see that number“
“I’ve never, ever seen a sodium level that high“
“Typically, normal is typically between 135 and 145 mEq/L, with slight variations of that range depending on the lab”
“Burzynski’s excuse, which I’ve heard at various times as being due to an “improper blood draw” or as described above, is purest nonsense”
“Unless the technician spiked Josia’s sample with 3% saline or something like that, there’s no way to get the leve that high”
“Josia almost certainly died because of hypernatremia from antineoplaston therapy“
“To me, this is the biggest revelation of the story:”
“The story and identity of the child who was killed by Burzynski’s treatments“
——————————————————————
I did NOT know that GorskGeek was the Medical Examiner for the United States Food and Drug Administration
—————————————————————— GorskGeek is mistaken, as the “purest nonsense” is his nonsensical claim:
“I’ve never, ever seen a sodium level that high“
The reasonGorskGeek has:
“never, ever seen a sodium level that high”
is because he’s a “hack”, who’s more interested in churning out as many blogsplats as he can, rather than doing real“science-based medicine”research
As evidence of MY claim, I submit:
—————————————————————— 9/2004 – A Non-Fatal Case of Sodium Toxicity (Hypernatremia)
—————————————————————— “6 year old boy who was taken to the hospital following a seizure attack, and lab analyses revealed a serum sodium (Na+) levels of 234 mEq/L”
“A search of the boy’s house led to the discovery of rock salt in the cabinet and a container of table salt”
“Extrapolating from the serum sodium (Na+) level, it was estimated that the child had ingested approximately 4 tablespoons of rock salt, leading to the acute toxicity“
“A literature search revealed that the serum sodium (Na+) concentration in the present report was the highest documented level of sodium in a living person“
Non-Fatal 193-209 mEq/L have been reported previously [3]
——————————————————————
We also learn that—surprise! surprise!—GorskGeek is an enormous tool
(as opposed to having “an enormous tool” His cranium is too small to have “enormous tool”)
—————————————————————— GorskGeek then hacks:
—————————————————————— “Look at him dismiss his critics, particularly former patients, many of whom, let’s recall, have terminal cancer, many of whom are dead:”
“Burzynski dismisses criticism of his work, referring to his detractors as “hooligans” and “hired assassins.””
—————————————————————— GorskGeek, you are a “hooligan”, liar, lame, loser, et al.
—————————————————————— GorskGeek proceeds:
—————————————————————— “You know, whenever I hear Burzynski fans like Eric Merola accuse skeptics of attacking cancer patients, of accusing them of horrible things”
“I think I will throw this quote right back in their faces”
“Here’s Burzynski calling his patients prostitutes, thieves, and mafia bosses, and “not the greatest people in the world,” while accusing them of wanting to “extort money from us.””
—————————————————————— GorskGeek, LAME attempt at another LIE
Burzynski did NOT CALL his patients what YOU claim he called them
Let me repeat it for YOU, because I have the sneaking suspicion that YOU are “intellectually challenged”
BurzynskiSAID:
“We see patients from various walks of life”
“We see great people”
“We see crooks”
“We have prostitutes”
“We have thieves”
“We have mafia bosses”
“We have Secret Service agents”
“Many people are coming to us, OK?”
“Not all of them are the greatest people in the world”
—————————————————————— GorskGeek, just in case you did NOT learn this at the University of Michigan, there is a difference between SAYING“WE SEE” and / or “WE HAVE”, and CALLING someone something
Allow me to provide you with a great example
If I SAY that YOU are the BIGGEST POMPOUS ASS I’ve ever seen, and YOU are NOT a BIG POMPOUS ASS, then THAT is derogatory
However, if I CALL YOU the BIGGEST POMPOUS ASS that I have ever seen, because you really and truly are a BIG POMPOUS ASS; as you are, then THAT is NOT derogatory
—————————————————————— GorskGeek tries again:
—————————————————————— “Not surprisingly, he also liberally uses the Galileo gambit, but that’s not surprising, as he’s repeatedly made the hilariously arrogant and scientifically ignorant claim that he is a pioneer in genomic and personalized cancer therapy and that M.D. Anderson Cancer Center and other world-class cancer centers are “following his lead.””
“Indeed, he claimed to have invented the field 20 years ago”
“Sadly, his publication record does not support such grandiose claims“
—————————————————————— GorskGeek, how would you know ?
You proved that you weren’t smarter than a 5th grader when you could NOT find Burzynski’s1997 Antineoplastons, oncogenes and cancer [4]
—————————————————————— “Curious as to just what the heck Burzynski was talking about here, I searched PubMed for this alleged review article”
“I couldn’t find it on PubMed“
“Perhaps Burzynski proposed this “revolutionary” new idea in a peer-reviewed article that’s not indexed in PubMed, but if he did I couldn’t find it using Google and Google Scholar“[5]
So why should ANYONE believe that you were able to locate the rest of his publications
and review all of them?
Now THAT would be a “grandiose claim”
—————————————————————— GorskGeek was also the village “idiot savant” (minus the “savant”) who face planted:
“how Burzynski never explains which genes are targeted by antineoplastons … “[6]
GorskGeek must have fumed for days when he found I “fact-checked” his fluff and found it false: [7-8]
—————————————————————— GorskGeekhopes to wreak havoc when he harrumphs:
—————————————————————— “For instance, experts are saying the same things I’ve been saying for a couple of years now about Burzynski’s anecdotes of “miracle cures,” such as Hannah Bradley and Laura Hymas”
“The reasons for these anecdotes include:”
“Burzynski often relies on anecdotes, which don’t tell the full story”
“Burzynski’s therapies are unproven“
“Burzynski’s patients may have been misdiagnosed“
“Burzynski’s patients may have been cured by previous therapy“
“There’s a reason why I’ve spent so much time deconstructing Burzynski anecdotes, and it’s for all of those reasons plus that anecdotes are often interpreted incorrectly by patients without medical training”
“Even doctors who are not oncologists sometimes interpret such anecdotes incorrectly to indicate that the cancer therapy chosen is the therapy that cured the patient“
“It’s not just Burzynski patient anecdotes, but it’s any cancer cure anecdote“
“That’s why clinical trials are necessary to differentiate all these confounding effects from actual effects due to the treatment”
—————————————————————— GorskiGeek displays what an abject #FAIL he is, as the question he should be asking is:
Why is the Food and Drug Administration FORCING patients to #FAIL conventional treatments; such as surgery, chemotherapy, and radiation therapy, before being allowed to utilize antineoplaston therapy ?
If the FDA was NOT doing this, then GorskGeek and the “so-called experts” would NOT have this crutch to fall back on
GorskGeek, please list all the other phase II clinical trials where the F.D.A. has done this, and please also explain what would you do if the FDA did this to YOUR clinical trials ?
I know this might require some “Grapefruits” on your part, but do try and see if you can find yours in order to pull this off, if you’re NOT the coward I think you are
And when you’re done with that, please try to explain away the case of Jessica Ressel-Doeden
GorskGeekwinds up for the pitch of bullshit
He ratchets back his right arm and rockets it right into his rectum, reaches ’round and pulls out this righteousness:
—————————————————————— “Not coincidentally, Hannah Bradley had surgery, chemotherapy, and radiation, and Laura Hymas had radiation and chemotherapy”
GorskGeek, Hannah Bradley NEVER had chemotherapy, unless you are now going to claim that by “chemotherapy” you meant antineoplastons [9]
Hannah specifically mentioned:
“Chemotherapy also mentioned but not strong enough for that” [10]
—————————————————————— GorskGeek:
“Even doctors who are not oncologists sometimes interpret such anecdotes incorrectly” ?
I think you meant, even breast cancer oncologist specialists who are NOT brain cancer oncology specialists interpret incorrectly, you JackASS
====================================== [4] – 1997 – Burzynski. S.R. Antineoplastons. oncogenes and cancer. Anti-Aging Medical Therapeutics, Vol.1. Klatz RM.
Goldman R. (Ed). Health Quest Publication 1997; Marina del Rey, CA. USA
Pg. 24
——————————————————————
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!
======================================
====================================== [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
——————————————————————
Are you there ?
Okay, we might as well get started if were going to do this
Alright, so ummm I guess we can start with uhhh bit of a conversation
Uhhh
You’ve been on the Burzynski Hashtag for a long time – what’s you’re motivation ?
Okay
So what information have Skeptics posted that they uhhh that they missed that demonstrates that Burzynski’s uhhh treatments are effective ?
What, what have we missed ? Well okay, uh one of the issues that Skeptics have with Burzynski is that in order to, let’s say, elevate uh the profile of his drug, in order to make sure that everybody who needs it can get, is to complete a phase 3 uh trial uh he started uh I believe was it just the one, right ?
Uhmmm, and that’s gone nowhere
In fact, it was withdrawn this I think within the last week
It doesn’t look like its going to happen, and this is, you know, for all the the phase 1 and phase 2 trials, those are very preliminary trials
Uhmmm, the phase 3 is is will be the gold standard, and also the bare minimum that that the larger medical community will accept uhhh as evidence, so it’s like you’ve lowered the bar for for evidence in a way that that you know oncologists don’t
The the
Right
So, do you think that there is a uh uh conspiracy to keep Burzynski from publishing ?
Right
Right
So, uhmmm, as far as I understand it The Lancet, uhhh the the question of The Lancet publication ehhh is par for the course, that most people are, when they get a speedy rejection from a uh uh, uh journal, are actually uh grateful, because that means there allowed to go ahead and submit their material to another journal more quickly and get it out there
Uhm, but the reaction that we saw on the side of the Burzynski camp was that, see, they’ll never publish us
Uhm, which is, eg, taken as far as I can tell as evidence of a conspiracy or that his name is is poison uh I mean, I think it is, but uhmmm, that wasn’t indicated in the in the rejection letter in order to uh claim that it is is to go beyond the evidence which again we’re not really willing to do
So, uhmmm what is the the ration the the something that I think a lot of of a lot of The Skeptics have been curious about when it comes to your your your blog and your behavior on-line uhhh is that that that, that the format of your blog does not make sense to us, we don’t understand exactly what you’re trying to do with it
Could you kind of clarify that for us because it’s uhhh long and it’s it’s intense and there’s a lot of emotion behind it but we don’t understand exactly, what it’s supposed to mean
Alright, ah have you read The Other Burzynski Patient Group ?
So, ahmmm what is your response say to the story of Amelia Saunders ?
Okay, what part of, what did I get wrong ?
Uh was that Amelia and Luna ?
Luna was the other one, correct
Oh, I, you’re talking, oh this is one of the very 1st ones that we did on the, on the site
Uhmmm, oh, her name is, her name escapes me at the moment
Um, but she wasn’t there for for very long but uh her condition deteriorated very rapidly
Uhmmm, and one of the questions that we had, we raised, is is, you know, you you don’t need to reach full dosage ’cause the the full dosage for these ANP seem to be pretty high, at least the sodium load that that that patients are asked to to carry, or required to carry if they they go on it
And we wondered if the sodium load was ah to great for someone who has a brain tumor, I mean uh, you know uh sodium load will increase your blood pressure, and these people have extra things in their brains that probably won’t react well to swelling, right, and and wont react well to pressure, so we were wondering, if in fact you don’t have to reach the full dosage in order to have uh severe side effects
Ummm, you know maybe you haven’t reached a therapeutic dose level, but that doesn’t mean that it didn’t have an effect on her
And you can clearly tell, that, you know in the videos, well at least the videos before the family took it down, that she was lethargic and a little bit out of it, she uh the the difference in her conscious state was no noticeable for anyone to see
Ummm, to, you know where she had been up and about to in her bed kind of slurring and and, and and and, in fact just disoriented, just looked like someone had taken the piss out of her I mean, ummm, so that’s, that one, ummm, you know the critique that, reaching therapeutic levels and having a biological effect on someone are are clearly different things in her case
Uhmmm, now I never went on you know on to say ummm that uh she had uh reached therapeutic levels
Uhmmm, I I think as far as I went was that she went, she paid her $30,000 dollars and then she died
Uhmmm, and and and what part of that’s not true
Okay, so, um, going back to Amelia, um, some of the the most um I think the most serious charges is that we see a uh repeatedly in his uh uh stories of his patients, um those are all cited, those are all backed uh by, you know, um at least as good as anything the Burzynski Patient Group has ever done
Uhmmm, something that we see over and over are patients reporting over and over that signs of getting worse are signs if getting better
Um, in particular a, uh report that’s very common from from patients is that the center of their solid tumors are breaking up
One of the problems that we we we see is that that is more frequently a sign of ischemic necrosis that the tumor has outgrown its blood supply and that it’s dying on the inside
And when you see something like a 5th of the patients who we’ve been able to to document, reporting this excitedly, we get extremely concerned about what’s happening
Uhmmm, what part of that is not absolutely terrifying to you Well, the the yeah I’ve never seen anyone say that the purpose of the antineoplastons is to cause uhhh, you know, to restrict the blood flow to the tumor and and and uh cause it to die that way, which is certainly one therapeutic approach that’s been, that’s been floated and research has been done on uh and might even be promising and uh what he’s saying is that cancer is caused by a lack of antineoplastons in the system and that basically what he is doing is antineoplaston uh uh supplement therapy uh rath, what’s the word I’m looking for, uhm uh, replacement therapy
Uh and there isn’t a doctor on the planet, uh not a medical specialist on the planet, who, I, who has identified at at as a contributing factor as a contributor to cancer or antineo or lack of antineoplastons
So
Why isn’t he, you know, you understand that these doctors, ummm like nothing is true or false because a doctor says it is true or false
Uhmmm it’s it’s it but when the entire medical community uhhh who are des are desperately are are every bit as tired of seeing patients die uhmmm and seeing patients suffer or as anyone else’s families are you you imagine what an oncologist sees in that office over the course of of a year and there’s going to be unimaginable suffering
I’m sure that they’re tired of that
And that they would, you know, that if there was the slightest hint that antineoplaston deficiency was a cause of cancer that it would make it into the literature, with or without Burzynski
Uhhh ummm, why should we trust him when he has uh the sole uh the only person who had identified antineoplastons as a contributor to cancer when he is the sole manufacturer of the of the therapy uh when he is the uh sole prescriber of the therapy and when he is, where the sole distributor of the therapy from his pharmacy
He’s read everything
I think
Can you go ahead and send me that link that that I saw in the chat that you had uh posted a couple of times in the chat
Could you send me that link, to that publication
I can give you a minute to to go find it if that’s
That would be good
Uhmmm Well, yeah that’s a, that’s you know one of the major problems that this this cancer has is the location is such a pain to get to
Uhm, and often when we are talking about these cancers, the thing that gets me over and over and over, and this is something that I’ve learned from from working uh with others on the Burzynski Patient Group is what’s it like to be a cancer patient, only by proxy, man I couldn’t imagine really going through this myself, and, you know I’d hate to see my family go through this
That these people are at what could be described as a low point, they’re um uhhh, you get a diagnosis of uh brainstem glioma the prognosis is very bad
Uhmmm, there are only a few cases of people recovering from that, I mean they’re there uhm uhhh but, you know that it’s an, it’s an extremely grim prognosis
Uhhh and I worry that when they’re in that desperate state and especially let’s talk about the children, you have these kids who are uh you know 2 and 3 and have had this, you know uh awful diagnosis and the parents are willing to do literally anything to keep their kids alive
What protections are in place for patients as far as that these kids are and and their parents are protected
Who had the better results ?
Okay
Hmmm, yeah, the, Guy Chapman has just um uh tossed in a a, a comment
I guess uh that there are a lot of people who wanna talk to you (laughter)
Uh, Guy Chapman has just jumped in and said it looks like you forgot the phase 3 trial is withdrawn and none of the phase 2 trials were published
Uhmmm, this, this is not a minor thing for for for Skeptics
This, this is exactly what will convince us to get on board the Burzynski train is the publication of these trials
But even the preliminary trials, one has been finished, and none has been published in its entirety for over 15 years
When you consider that this is a, as you just pointed out, this is a a cancer, the, especially the brainstem gliomas
That these cancers uh the cases resolved fairly quickly, we know what the outcome are fairly quickly
Ummm, do you have any sense of when these trials are going to be published ?
From Laura ?
Right
When you, when you think about a major, sorry, go ahead
Yeah, right, uh
Antineoplastons has a better rate ?
Right
Right, one of the things that that there there are 2 points to be made here
Uhm, the 1st one is that major pharmaceutical companies that are getting this accelerated approval have a track record of producing results which Burzynski does not have
Secondly, when it comes to ummm the rates of antineoplastons, how can we possibly say without a single published trial he, that he has an improved rate over Temodar or anything like that, and that’s exactly what would show to us whether or not his rate is better, the the types of publications that he’s done, that look really good on paper, ummm, to the to the, the common persons eye are these case series where he goes through and picks out people who have happened to have survived
But what that doesn’t tell us is whether or not the antineoplaston had anything to do with it
What you need to do is go and separate the background noise, the random weird rare but very real survive, unexpected survivals that occur, and separate those, uhhh, from any effect of antineoplaston, he’s never done that
But if you think about that, I mean that if it does have a a an improvement rate above uh other treatments
That still has an improvement rate, you know, that, that would give another option to people, ummm, even if in the aggregate their rates aren’t better
It might work on some individuals tumors rather than on, you know, you you it it is it taken as a, as a lump but extend life by uh quality of life for 3 months or something um in some cases but, you know, it it still has an effect, a real effect, and deserves to be out there
That’s a long time when someone is dying Well, one of
One of the problems that that doctors have in in this country when it comes to doing ummm antineoplastons studies to verify any any effect that uh Burzynski has uhhh I i think back to the one where people say well that the FDA sabotaged his trials, and Well, if if you think about it though, um, the, the proposed action as I understand it of the antineoplaston is that it’s a deacetylase inhibitor, which slightly unspools DNA, that allows uh, which would allow uh proteins to get into a pair of damaged DNA
And we have drugs that do that which carry a much lower sodium load
Uh, um, it, that would have a therapeutic effect on and that the risks outweigh the possible benefits of using this one particular drug
Um, I’ve seen any number of people looking at um, if you look at the Luna ah Pettiguine uh uh story on The Other Burzynski Patient Group um you see that the doctor is absolutely horrified by the insane sodium load that that Burzynski’s patients are carrying
Um in in some ways that that sodium load is uh leading people to constantly drinking up to I’ve seen 12 liters of water a day
That’s not necessary for other deactsylace inhibitors
Um the, why would you prefer that to to another drug if it did essentially the same thing, that didnt have this massive side effect ?
thats not necessary for other deactsylace inhibitors Well that sss I believe that that’s proposed by the researchers, the design trial, you know they they sign off on it but that is is, is up to uh Burzynski uh my uh David James @StortSkeptic on the
ah he has asked everything that Burzynski does looks sort of like the behaviors of pseudo-science
So what we’re saying uhhh he does uh uhhh Burzynski like for instance like I said he has vertically integrated, ah, he controls all parts from identification to the creation of the drug uh to the diagnosing uh well he doesn’t do the diagnosing but he does um um prescribe and distribute, he does all that vertically, which is actually something that snake oil salesmen do
Another thing that that’s a red flag in Skeptic circles is that his one compound seems to be a sort of panacea for all sorts of different types of, of of cancers, um where we know that cancer has a a varied uh, uh, ideology and and the uh panaceas are are are to be and a variety of different types of causes um, in fact in any one tumor you would, you could say that these, these tumors are are completely uh heterogenous
The idea that there’s gonna be one knockout, it seems rather unrealistic
Um, additionally he charges immense amounts of money for this drug, um, even though the components cost pennies
Um, on top of that, um, there’s something that he asks for a a huge payment up front
That’s something that’s been warned against for generations of uh by anti-quack um uh crusaders if if they’re asking for everything up front, then be afraid
Ummm, another thing is that uh the kind of cult that’s sprung up around Burzynski, uh, one that is immune to uh criticism, reason, and pits people who are doing standard cancer research, as enemies, um, creating a black and white version of the world where there are good people and there are bad people
There are people who are fighting the disease, and then there are people who are really helping the disease
I mean, if you look at the, the new web-site by the Burzynski patients fighting back group, they say support the cure not the cancer
That’s a manikin world-view of black and white
Um, these are all huge red flags, that you’re dealing with a quack
Um, why hasn’t Burzynski done anything to change that ?
Right Well, there, this is important
This is really important though
Wha, when she’s talking about, that’s Luna Pettiguine’s mother, is is talking about the costs there
Uhmmm, you, when someone is not insured in in this country,
Ahm, the, the the base cost that that’s calculated is, is the hospital only expects to get a fraction, a tiny fraction of that back from the insurance companies, and that’s why the costs are so inflated
Um, usually, when a patient is self-pay there is a self-pay price which is a more reasonable price
Additionally, all of those therapies, have demonstrated efficacy, and if Burzynski were to demonstrate his efficacy, $30,000 dollars to start on a life-saving treatment for a child would be a steal, and he would earn every nickel of it
Um, so, those arguments hold very little weight with us
He has a a an enormous house that’s valued in the tens of millions of dollars, he could do that if if the other, the other thing he could do, and this, we would love to see him do this, wousa, would be apply to Federal grant
That, that would be amazing, if he could get a grant to study this stuff
But, you know, um, I I don’t think he’d be able to get one, I don’t think he’s shown uh that he can carry off a uh a research program responsibly
Uhmmm Well
Oh he, have you noticed the the, the thing on his web-site where if you make a donation to the clinic it goes directly to him ?
Right You know, you know
Ummm, o-kay
Uh, I want to turn this over to the people who are watching
Um, I want to give them a a chance to address you as well
Uhmmm, hi everyone
Uhmmm, so, um, let’s, let’s wait for for that to roll in, and I do wait to go back to the, the the, the and let’s be very specific about this, the the things that you see on The Other Burzynski Patent Group, a patient reporting that um uh getting worse is getting better
How do you explain that ? Well that’s just a known side-effect, your going to know that going in, but we actually have people say
Are there, why why why not, these people, see this is the thing though
The reason that site was started was because the people that don’t make it don’t have a voice
And when you, when you whittle away, when you only look at the at the, the positive outcomes, which is exactly in Burzynski’s favor to only look at the positive outcomes, and to have no sense of how other people’s diseases progressed, right, you’re gonna get a skewed and inaccurate version of the efficacy of this particular drug Now lets lets lets go back and not talk about Laura, lets talk about these patients who report symptoms of getting worse, as if they were signs of getting better
Some people say that oh it’s a healing crisis or it’s progression of the disease
Or other people say it’s breaking up in the middle, hurrah
No, it’s actually a tumor that’s growing
That record there, that’s being left by patients, whose stories are every bit as important as the as the stories of the patients who have lived, are painting a completely different picture
How do you explain that ?
Are they feeding these people their stories ?
Are they feeding these people their stories
Okay I’m going to go back, I want to point something else out to you
Um, I have to, I don’t remember the exact patient so I have to go back to my web-site to take a look at it
Um
Because we are, because we’re on a Google+ stream that that’s a lot of data it takes awhile to bring up my, my site
Let me
Uhmmm Well, that seems to give him an instant out, no matter what happens
That turns his claims into something that’s unfalsifiable
If I could give you an example of what unfalsifiable is
Um, and I’ll I’ll draw an uh, uh, case, uh hypothetical case of um uh proposed by Carl Sagan as the invisible dragon in your garage
If you say you have have a dragon in your garage, um, you know, you should be able to go over and verify that there’s a dragon in the garage
So let’s say we go over to Carl Sagan’s garage and, you know Well, I don’t see anything Well it’s an invisible dragon Well okay, well then, let’s uh spray paint it Well, it’s incorporeal Well, uh, let’s measure for the heat of the breath Well it’s heatless flame that it breathes
And, you know, okay, well then we’ll put flour down on the ground to see that it’s it it’s standing there
And, oh no it’s ah it’s floating Well, you know, at some point, when you can’t falsify something
When you cannot, even in principle, prove something false, it’s indistinguishable from something that’s not there
And that kind of out, that oh well the tumor can keep on growing
Th (laugh) that that that’s an invisible dragon, as far as I can tell
A every time that I and and and and , and David points this out, that um, you you know your not going to speculate about the the FDA but then at every turn your invoking the FDA as being obstructionist
I, I just find that to be contradictory and and self-defeating
Um, let me see Well, that’s not necessarily true
I mean uh when it when it comes to the case um I’ve i’ve talked to oncologists about this
And when it comes to uh for instance in in this case it sounds like it was a pediatric patient who was dying, ummm, who had died, ummm, the,
the 1st inclination is to ascribe the death to, um, to the tumor, which actually, would be to Burzynski’s benefit if there were other cases, I’m not saying there were, but if there were other cases where this type of complication arose, and it was ascribed to the tumor they might well not do it, uh, do an autopsy
Um, it’s ah as you could imagine it could be very difficult for the families to do that especially when they have ooh ah, a possibility of what, you know, led to the ultimate demise, that didn’t involve them ultimately somehow being responsible for it, right ?
So, it it it doesn’t seem to me that necessarily an autopsy would be um a a done deal
Um, let me see
No we don’t and it would be irresponsible to completely speculate on on, on, the outcome of that uh, uh, uh, individual patient, I am still scrolling through looking for this story that I wanted to talk about
Uh, and, I guess I’ll
It should be in Amelia’s I I, I packed Amelia’s story with all the stories, um, that I could find um in what we’d written up already
Um
Hold on a sec
She is a cute kid though
Um, alright
Now, our favorite oncologist (laugh), as you keep putting it, um, uh, with with the Amelia story, um, uh, was able to correctly determine that the Saunders family, had a, did not understand the significance of this cyst that had opened up in, uh, that had opened up in the center of the tumor, in fact they were ecstatic
They were delighted
Um, the family, of Haley, um, S, also
Uh, the the family of Haley S., also, had the same reading given to them
Um, the same diagnosis uh same prognosis was to, was given to Justin B in 2006
A similar cyst in Lesley S’s story uh ah, was in 2006
Um, and that kept her on uh treatment for a a another month so that could be another $7,000 some odd dollars
We same thing in the, in the case of, uh, Samantha T in 2005
We see it again as far back as 1994, in Cody G’s story
And then lastly and and the worst uh thing that we’ve seen, the patients report that Burzynski himself told Chase uh Sammut
The exact same thing
Um, and that was a
Have you read Chase’s story
It would stick with you, because that case is grotesque
The parents, uh, there was even a uh, uh, a fight over whether or not the parents should be allowed to continue treating this kid
He was basically lying, uh, in a uh uh brain dead uh for all intents and purposes, uh, in a in a coma uh without possibility of reversal, in his parents living room for months
Um, eh, all the while, he’s still on the, uh, well I don’t actually, I can’t say that, I don’t exactly know if he was on the treatment the whole time
Um, but, we do have this pattern, that is there, of people believing, that this particular pattern is, uh, progress, a a is not progression of disease but is is inducement to to stay on, um, eh, and this has been going on for decades
Eh, eh just based on what we’ve been able to find that patients have been reporting this for decades
At some point, you would think that a doctor would realize that perhaps what these patients are walking away with is inaccurate
Why hasn’t that changed ?
E wel that that that that’s not it
This is this is like the 2nd day of oncology class, that that’s what the tumor looks like
People are reporting that the tumor is no longer growing, um, or that the growing has slowed after they’ve started Well, okay
There, there is an explanation for that, and why you can’t take that as necessarily being evidence of efficacy
Ah, the tumor grows exponentially while the resources are available to it, but then it reaches a point where it’s a self-limited growth, so it, the time between uh doublings in size decreases logarithmically
Um, so this is, this is like basic tumor physiology that we’re talking about, and his patients don’t leave his office, knowing these facts, for decades
This doesn’t have anything to do with the, do with the drug
This this
But, but when it’s, this treatment is working or this is not evidence that the treatment is working
That’s pretty basic
I mean we’re not, we’re not talking about deactsylace inhibitors or anything like that were you’d really need to know something about
This is, whether or not, you’re getting the outcome that you want
This is the whole reason for going
And it has nothing to do with the with the with the drugs
Which is, which is like which we just pointed out was a was an invisible dragon
you’re you’re you’re assuming
You’re you’re you’re assuming that
You’re assuming that
Um, I’m not assuming that
Ultimately it would, but whether or not it it it had a genuine therapeutic effect is a different matter all together
Um, this, what would, what would convince you that you’re wrong
So you’re saying because the Orphan Drug Designation and the face that there’s a phase 3, therefor it works ?
So what you’re saying is there’s nothing that would convince you now, that it doesn’t work
O-kay
Um, it’s it’s it’s not the FDA’s, but you understand it’s not the FDA’s job to tell someone that their drug doesn’t work
it’s it’s it’s up to Burzynski
It’s up to Burzynski to show that his drug does work
And it’s always been his burden of proof
He’s the one that’s been claiming this miracle cancer cure, forever
Um, I don’t know if you’ve read Jaffe’s book
There seems to have been a lot going on there you really should look at it because it’s it’s it’s kind of revealing
Um, that that that it seems that there was a lot of political pressure applied to the FDA which may have been, uh, uh, have influenced the way in which these these trials were approved
I I would say that it is a genuine con uh uh bit of confusion on the parts of Skeptics
We don’t know why the phase 3 trial was approved
I don’t know that we’ve seen even the phase 1 trials, we don’t know why he’s getting a phase 3
And there’s a real story in that, we think
Um, that we’d love to see, however we can’t see, however we can’t see it because of proti protri proprietary uh protections that the FDA is giving to Burzynski, right ?
They’re not sharing his trial designs because they are his trial designs, right?
That the makeup of his drug that he’s distributing are his, uh design, and his intellectual property
So the FDA is protecting him, uh from outside scrutiny
While you may imagine that that, that that the FDA is is somehow antagonistic toward him
They’ve given him every opportunity, over 60 opportunities to prove himself worth uh their confidence and hasn’t
Um, but I definitely recommend that you look at Jaffe’s book and you will see, I think, um that um it’s called um, uh Galileo’s
You know what it’s called, okay, yeah
Um, definitely look at that
Um, you, you will see, the ways in which, the way that we got to this point, isn’t necessarily having anything to do with the efficacy of the drug
That comes across very clearly
Um, you, you mentioned it yourself, he he’s done well to listen to Jaffe’s advice, right ?
So, there there’s a lot to that
Um, uh, but yeah, let me go back to the Twitter feed
Um
Well it sounds to me like they’re they’re not um, the the the you know, they’ve put the clinical hold on now because they now have evidence that somebody may have died because of the treatment
Um, I don’t know what the state of that is right now
Um, uh, oh my gosh, um, let me see
Someone has just sent me a, a ah a link to, are you following the Hashtag, as this is going on
Okay
I’m doing, I’m doing the 2 things at once and it’s um, ok ok well it’s well ok I can’t I can’t go in and read that right now
Um, I would, ok let me tell you exactly what it will take, for me to come around and promote Burzynski
Um, for me, he needs to get a publication in a uh, yeah, uh uh uh publication in a peer-reviewed journal, a respected peer-reviewed journal, not like the the Journal of Medical Hypothesis or things we just made up
Um, something, you know, a a good, respectable journal that oncologists would read, that research oncologists would read
I would need an completely independent group to replicate his findings, and then I’d be all for it
I would say that right now, the business model that the Burzynski Clinic seems to depend on, as best as I can tell from an outsider, that, um, uh, that it depends on people paying money up front
It doesn’t depend on him developing and taking away a viable drug, that he can market to the entire world
His business model as best I can tell, is to keep it in house
That seems, if it works, if his drug genuinely works, and he hasn’t sent it along to mass approval, where he gets, for a couple of years at least, you know, exclusive rights to produce and sell this stuff, for one of the most intractable diseases, uh that man eh can can can, you know, can get, um, that suggests to me that there’s something else going on here
Now, someone has just sent a a note, uh that he has failed 3 different Institutional Review Board audits; this is Guy Chapman, uh no other institution has a 3 for 3 fail, according to to Guy iye he knows no other one
Um, that 45% of phase 3 clinical trials fail due to deficient phase 2 design
Um, he has an approved phase 3, but phase 2 was deficient so phase 3 fails
Do you think that that could possibly have anything to do with why we’re not seeing the phase 3 advance
He’s claimed
He’s claimed
That’s a different thing altogether
And in fact
Well, you understand why they do that, because in order to, it’s
No, they do do this with other drugs, well, it depends on the type
Some drugs it’s ethical to give something completely questionable, what they want to make sure that they at least get the standard care, you know which includes radiation
Um, and radiation does seem to extend life, reduce the size of some tumors some times
Um, do you concede, that in order to have a phase 3, you do not need to have a successful phase 2 ?
When 45% of phase 3 fail because they have a deficient phase 2 design, do you concede that ? Well, ok
It doesn’t matter where
It doesn’t matter where it comes from uh, um
So-kay, um that would be shooting the messenger as opposed to dealing with the question, but
the idea, the best, well, the best, well in that case the best response is “I don’t know”
There’s something that that we don’t know, you’re coming, honestly we didn’t know what to expect when we talked to you
We, were looking at the design, of your web-site and wondering whether or not we would be able to get a a coherent sentence out of you, because the web-site is disorganized, uh
Um, at at at at least it’s the organization is not apparent to the readers
Um, and um according to
No, that is tied together
But let me, we know that that the the, the central concern is Burzynski
Ah, the source of this ah of of those #’s that I just gave you, Chapman has just updated me and he says um that it is, and I’ll go back to the, the ADR research . com issues in clinical research, so it’s the question, Bay Clinical uh Research and Clinical Development, a white paper called “Why do so many pase 3 clinical trials fail ?
Uh, it’s prepared by Anastassios Retzios, Ph.D
Is Anastassios Retzios reliable ?
There is a correct here
Exactly
That’s the right answer
You don’t know
You don’t know
You need to look into it
Alright ?
Before you dismiss it you have to look into it
Everytime somebody throws uh uh something to me, I have to look into it
That’s just, it’s my responsibility as a reader
Um
What, what stuff would you like
What stuff would you like me to do ?
I generally, I don’t read your blog
Uh um, alright
Okay, I’ll look at that, and I will respond to it once I’ve taken a look at that, okay ?
Um, and I’ll respond on your web-site
Um, seems only fair
Um, one question I’d wondered, what is the Didymus Judas Thomas reference to
Oh, so this is the Doubting Thomas
This is the Doubting Thomas
Okay, so this is the one, you show me the, you put your your, the, your hand inside the wound You know, Jesus says, basically, ok, bring it on, check me out, right ?
Okay
Alright
That that, I didn’t, I didn’t realize that he was also, that that was the same guy
So, it’s it’s the Doubting Thomas
Um, what we would say, um, is that if Burzynski is the savior that he claims to be, that he should, open up his trials, he should open up his uh research uh protocols um and just say, “Look, bring it on”
Check out these wounds
But he’s never done that
Instead he he he wants us to just take the words of of of of his apostles
I don’t necessarily trust his apostles
I don’t think that they’re unbiased
I wanna see the data
I wanna see the the wounds in his hands and the the mark on his side
Oh, hey when when we talk about The Other Burzynski Patient Group, I don’t make any pretensions to make that my site proves anything
I I I really don’t
It’s not my job to prove anything
It’s Burzynski’s job
It is a researchers job to prove these things
But we just pointed out, we just pointed out, that the FDA, often approves, phase 3 trials, based on flawed phase 2 clinical trials
That is therefor a real possibility in this case
Yes you would
T t and what I would honestly expect and hope, is that you would be honest about this, to yourself, and and and that’s the thing we don’t, we often don’t realize that we’re not being honest with ourself
I try to fight against it, constantly
But, um, uh but the way that you’d earlier phrased your uh your response to “could you possibly be proved wrong ?”, . . really did exclude other possibilities of of of of yourself being wrong
So if the FDA Well I’m not talking about the Guy Chapman
What you off, when I asked you, yourself, you know, what would prove you wrong, you said that the FDA hasn’t approved a phase 3 Well, ok
Let’s let’s back, let’s back up
What would the FDA, what happens if the FDA occasionally op op opposes, approves uh phase 3 trials, based on bad phase 2 trials
Would that be, would that cause any doubt in your mind ?
About the efficacy of ANP
Yeah, hello, yeah, you’re back
Yeah Google+ is a little wonky sometimes
But, would, does, if you were to learn, that sometimes phase 3 trials, uh, are approved, and failed, based on flawed phase 2, would, would that make you reconsider your position of the phase 3 being evidence that it works
Uh um could you send me that link, the, the, um . me see
I’m just looking at other things that are coming in on the Hashtag right now
Um, so the ANP is Orphan Drug status but is it Orphan Drug for glioma ?
Is it sodium phenylbutyrate or is it the the versions of the drug, the AS10 stuff or A1 or whatever it’s called ?
Okay, that’s what has Orphan Drug status
Alright, I’ll look into that I hope somebody is writing all this down out there, so that we can go back and look at these claims later, right ?
So, oh, um
Do you have any questions for me ?
I’ve spent a lot of times asking questions of you
Mhmm
Guy Chapman, throws up the the, the comment, permission to investigate is not evidence of anything other than evidence of a valid protocol, not a uh, evidence of efficacy, in and of itself
That’s another comment
Um, alright then, this is your chance t, there are lots of people have lots of questions about me out there
Uh, about what my motivations are and such
I might as well put that out on the table just so it’s on the record, is that I am taking exactly no money from anyone for this, and have gotten nothin’ but grief from a lot of people, even people who, even people who support me have given me grief for this
Um, just so that you know, um, there have been, some of the things that have happened, oh, this is an important point too
Um, that when we have criticized this, uh, a # of us, especially Gorski, uh myself, uh Rhys Morgan, uh, um, and and uh Popehat, the the lawyer, blog, uh, um, who else was on there, um, oh, the Merritts, uh, t, uh Wayne Merritt, and his family, people have been critical of of of Burzynski have faced retaliation for opposing him ah and intimidation, and including, um, I had my uh a couple weeks before Christmas my, my, the Chancellor of my University was contacted via e-mail, and uh Eric Merola said that I had been um, uh, been spreading mis truths about Burzynski, that I had been a be, on my my show um had said things that were demonstratively untrue, and he also said that the drug was FDA approved, which it, you know, that’s not right
But um, he said that he was gonna do, talk about me in his new movie, in, uh, relat, in millions of homes, um, and he wanted to get a statement from the University
The University of course ignored him, and immediately let me know that I was going to get smeared
Um, I consulted my lawyer and uh uh, you know, the best course of action was figured out, and um uh a Gorski has had his accreditation board contacted, he’s had his bosses contacted, Rhys Morgan received threats of liable suits from somebody who had been hired, by the clinic, to clean up his on-line reputation if he didn’t take down his on-line review of Burzynski, uh, had his a picture of his house sent to him, clearly the message being, “We know where you live kid,” uh, Wayne Merritt; a pancreatic cancer patient, this is something that, that people generally, do not recover from, like generally, die from, received phone calls at home, from, this individual, threatening him with lawsuits; he doesn’t have a law degree so he’s misrepresenting himself
Um, but all of this, was done, to critics
Do you think that is deserved ?
Do you think that that is right ?
Mhmm Well to be fair
It it it doesn’t strike me as necessarily a “Free Speech” issue, you know
Was it down-voted ?
No
Mhmm
Mhmm Well we do have for for for for one thing, um, I guess to understand is that we are uh motivated by um uh a respect, this is the one thing that that all Skeptics I think um are uh respect critical thinking, um, and um respect scientific uh a we we’re mostly scientific enthusiasts, there’s some Skeptics who are not um, uh, you know oh u space nerds, or whatever who are um just sc scholars and the humanities but for the most part we all respect scientific consensus and we respect scientific method and have an enthusiasm for living in the real world, this is something that like all of us us are about
And to that end, sometimes that influence is how we run, is how we decide to run our personal web-sites
Um, uh, that whether or not we want our, to give a platform to people who disagree with us, um, you know, uh, when we do, uh . . it it is our sandbox, you know, right ?
This, this, we’re allowed to to let whoever we want into our sandbox if we, you know, uh if we want
Did he, did he leave them up ?
Did he leave them up ?
Right, um, do you think that he is required to answer you
Right
Mhmm
Um so a a question uh why were why do you have so many Twitter and Wikipedia sock-puppets
Wikipedia
You left Wikipedia
Mhmm
Um a
Uh We have uh a response from David James, everyone uh gave you a fair shout
You were a spammer plain and simple
You couldn’t, you couldn’t
work out your questions
Twitter does not
Twitter does not block people for for arguing
Only for spamming and policy violations
Mhmm
Okay
Um, let me see
Each new account was blocked for additional violations of policies
Um, this is a uh uh referring to the Wikipedia rules too
Um, so
Um, Wikipedia, do you know why um they’ve locked the Burzynski page ?
Did you notice the part where he threatened, did you notice the part where he threatened to expose Wikipedia
We have to, well, they they uh are looking that it’s not one-sided information they want to show
Like they discuss, there is controversy about this guy
Yeah, Jaffe’s on there
Jaffe’s on there
uh well you could add that if you hadn’t gotten blocked
Okay
Um, so, who are you
She’s gotten threats
So we don’t know who you are
Like, she has suffered at the hands of some really mess, and she’s also, you have to realize she’s in the U.K, where libel laws are very lax at this point
That’s changing, ah, but uh, the the legitimate criticism, there is a big case last, me maybe 2 years ago of Simon Singh, talking about an alternative therapy, and, um, he was just saying that there’s no evidence for it but it’s promoted by um chiropractors, or something, or something like that
And he got slapped with a libel suit that cost him several years of his life and a lot of money
Um, so, there are several reasons why someone in the U.K. might uh be uh reticent to use their real name um, uh, and legitimate reasons
Um, in the U.S., I’m not sure that there is
I’ve been using my real name for a long time now
Um, you know, Gorski blogs under his real name, and is critical of uh, uh, also, let’s face it, everyone know, knows who “Orac” is
Um, how do we know that you don’t work for the clinic ?
Mhm Well see, one of the the problems is, Ju, I don’t know if you were around for the BurzynskiSaves thing
Did you ever see that account ?
Mhmm
Right
Oh no, I mean you have a right to do that but but I I’ve found that posting under a pseudonym diminishes my credibility
Um, so, . . the quote was uh um, uh, “Happily promotes bogus therapies,” was Simon Singh’s quote that got him sued
Um, but Josephine Jones does it to, quote “protect her family”
Um
So there’s that
Um, are you afraid for you’re family ?
Um, you don’t see that there would be anything to gain from, from going on-record ?
Um I I haven’t, I’ve never, honestly, I’ve never seen a Skeptic actually go after a person individually
Um, you know, uh, you, unless they were doing colossal harm to people
Um, to to focus on an, uh, let’s say, call someone’s work for um, yeah
Cite one example, of a Skeptic making shit for a Burzynski shill or anyone else in real life
That’s a quote
That’s, that’s something coming in from, from Guy
Like had anyone ever contacted Sheila Herron, or has anyone to to um, go after her job, or go after um, you know, my brother has gotten stuff from people
He didn’t tell me because he didn’t want to upset me, but my brother gets things from Burzynski supporters that are violent and threatening
I get letters telling me that I suck cancer’s dick
Um, I I’ve all sorts of things um, and I just, I’ve never seen that, that intrusion into real life on the part of uh, um, uh, Skeptics
I’ve never seen them doing that type of of of stuff
I’ve never seen them threatening bogus lawsuits
Um, and I I I wonder there, if there is some sort of, what do you think accounts for that, that difference?
Mhmm
Mhmm
I’ve I’ve I’ve shown up on, you know, as you, as you might, I imagine you moni, you monitor the Hashtag, right ?
Okay
Um, which is, which is your right
Um, uh, but every so often I jump in and say, you know, this movie has some flaws in it You know, that’s something I say rather frequently
Um, and I invite people, if they’re interested, to take a look at a couple of links
I don’t, I, you’ll notice that I no longer force people to like, “Well how do you explain this ?,” because that doesn’t seem to be very persuasive, or work at all
Ah, only people who are open minded to having their mind changed, those are the only ones I want to talk to
So I give them a choice
Kind of like Morpheus in The Matrix really
Um, b, that was a joke for me
Um, um anyway
Um, but, it it I, honestly, I would encourage you to go on-record, um, but I have, less than nothing invested in that, so, um
Uh, what’s next for you Well what happens Well what happens if he doesn’t understand what you’re saying ?
I mean one of the
I mean seriously Well, one of the problems I think that a lot of Skeptics have had, in in back channel discussions about this is that we don’t understand exactly what you’re saying
We certainly don’t understand why you’re so attached to him if you’ve never had any uh, you know, close dealing with uh, uh, with Burzynski
We don’t really understand that
Actually, especially when you consider, that all the information that we’ve put forward, that we’ve backed up with statements from uh, you know, uh, it, it, the statements that we have from from patients saying that you know, we’ve we’ve, we were told that, no that’s not exactly, they put it usually that but that that we believe that getting worse is getting better
Like how could someone continue to defend someone, when we pile up all of these different, you know, sources, saying the same thing ?
It it is, it is beyond us and we wonder if there’s absolutely anything that we could say that would convince you otherwise
But, I mean, but that means
Everything on The Other Other Burzynski Patient Group is referenced
It goes
There’s very little on
thehoustoncancerquack
There’s very little on
thehoustoncancerquack in the 1st place
Eh, right
The they both go to the same place
Uh un but, you know, we, the thing that that totally befuddles us, and is just endlessly frustrating, is like how many more examples, of patients believing that getting worse is getting better, and it’s not us saying it, it’s the patients saying it
And how many more of those patients do we need to to give you before you will like reconsider that perhaps you might be wrong ?
I don’t, the thing is though that, that that’s a inver, shifting the burden of proof off of Burzynski
Burzynski has to prove them wrong, has to prove him right
The FDA is not there to say this doesn’t work
The evidence would be
The evidence
The evidence would be phase 2 trials
And ev the evidence would be a completed and published phase 3 trial
That’s not forthcoming
The phase 3
You don’t know that he’s trying
He’d start completing these trials
And he would, he would be soliciting um, uh, lots of um, uh, you know, you know he’d be putting out papers constantly um and if the the British Medical Journal example’s anything uh representative of how Burzynski works, he’d immediately tell everyone that his he’s being . . blackballed by the, by the journal, even when it’s just a courtesy that he gets a a rejection
So, I mean, honestly, um, saying “Well, when the F, FDA tells you that it doesn’t work, the FDA’s never gonna say that because that’s not their job
So, given that what would, how many more patients do we have to show you before you consider that you may be wrong ?
That’s not an option, because they’re never gonna do it
They relinquish, a lot of authority, over to Burzynski, and his Institutional Review Board, which, I would mention, has failed 3 reviews in a row
Right ?
It is Burzynski’s job to be convincing
It is not our uh, uh, it it it he hasn’t produced in decades
In decades
In hundreds and hundreds of patients, who’ve payed to be on this
Hell, we’d we’d we’d like a prelim, well when you’re talking about something that is so difficult as brainstem glioma, that type of thing gets, really does in the publishing stream get fast-tracked there
they test it
Yeah, and they they they want uh, that was evidence of fast-tracking is what, that rejection was uh e was very quickly
Um, so, uh, uh again, the FDA is not the arbiter of this
It’s ultimately Burzynski
So, how long will it be before Burzynski doesn’t publish, that you decide that uh perhaps he’s he’s, doesn’t have the goods ?
You’ve been speculating about what the FDA’s motivation are like crazy
Why not speculate about Burzynski a little bit Well actually I’m not even asking you to speculate about Burzynski, I’m only asking you to tell me, how long would it take, uh how, for him to go unpublished like this, um, for this long, before you would doubt it ?
What ?
But these but but but that doesn’t have any bearing on
That doesn’t
Oh I’m not asking you how long, how long, would it take you for you to start doubting whether or not he has the goods ?
How long would it take ?
It’s a it’s a it’s a question that should be answered by a number uh uh months ?
Years ?
How long ?
It’s been 15 years already
I could push it back to 36 years
He hasn’t shown that it works for 36 years
I can do that
I was being nice
Perhaps based on bad phase 2
He withdrew
He withdrew the the phase 3 clinical trial
I that before recruiting,
although I’ve seen lots of people say they were on a phase 3 clinical trial
I wonder how that happened
Uh did do do you think that if they thought that he was a real doctor that they all would have refused like that ?
He’s changed things
That The Lancet is a top-tier journal like New England Journal of Medicine
It’s basically be, besieged by uh 100′s of people submitting their, their, their reports
Um, it’s just, you know, let’s say he, someone has such a thin publishing record as Burzynski does, do you think that it’s likely that he will ever get in a top-tier journal ?
What about the the Public Library of Science ?
It’s not the only journal there
What about BMC Cancer ?
There’s lots of places that he can go
Um, and he doesn’t seem to to have evailed himself of that, as far as I can tell
And I would know because he’d get rejected, or he’d be crowing, you know
Either way, he’s gonna tell us what happens
He told us what happened with The Lancet, you know
I don’t have any evidence that suggests to me that he’s even trying
So let’s go back to this
How long will it take ?
How long will it take before you, the Japanese study’s interesting too because we should be able to find that in the Japanese science databases, and we can find, we can’t find it at all
We can’t find it anywhere
And, and those are in English, so it’s not a language problem
We can’t find that anywhere
We’ve asked
We asked Rick Schiff, for, for that study
And, and it hasn’t come to us
He is now I believe on the Board of Directors, over there
He should have access to this
We can’t get it
How how long will it take before you recognize that, nothing is forthcoming ?
How long would that take ? Well, I mean, were talking about a blog here
We’re talking about life
No, we’re talking about a blogger’s feelings in that case
In in this case we’ren talking about, 1,000′s of patients, over the course of of of generations, you know
This is important stuff
This is not eh eh equating what’s happening to to patients with what’s happening to you is is completely off-kilter as far as I can tell
It’s nothing
It’s nothing like you not getting to say something on my web-site
You know
This is they they have thrown in with Burzynski, and they’ve trusted him, and he’s produced nothing
Nothing of substance
Nothing thas that has made all of that um, uh, n nothing th th th that uh his peers would take seriously
The other thing that that that strikes me now is that, you know, you you you you keep saying that, well Eric is going to to share things with you
Does it ever concern you eh uh eh occur to you that Eric might not be reliable ?
He then, and then he
And then he he, you know, the the the the dialogue that sprung up around that was, well see, he’s never going to get to get published Well you’re just setting yourself up for wish fulfillment
You want him to be, persecuted, so you are ecstatic when he doesn’t get to publish, which is unfortunate for all the cancer patients, who really thought that one day, all the studies were going to be published
Where has Eric been wrong ?
It’s it’s it’s it’s a form letter You know
They’re just saying, “No thanks”
“Thanks, but no thanks” is what they were saying, in the most generic way possible
Like I said, they’re besieged by researchers trying to publish
So, so, possibly
So possibly what you are saying is that they in fact have read it, and after having read it they’ve rejected it
Is that what you’re saying ?
Because that’s what peer-review is
Do you know it was the same editor, that it came from the same desk ?
You can’t make that assumption that that the form letter will be the same form letter every time
I mean you just can’t
I mean in in some ways we have a lot of non-information that you’re filling in, with what you expect, as as opposed to what’s actually really there, and I I I just think you’re putting too much uh stock in one uh, uh, in in in in this uh the publication kerfuffle
Um
Well, not necessarily
I’ve been in any # of professional groups where the organization is just not optimal, and publications certainly th there are all sorts of pressures from all sorts of different places
I I have no problems whatsoever with seeing that this might not be completely uh um uh streamlining uniform processes as possible
The fact that it’s not uniform, doesn’t have anything to do with Burzynski not publishing, not producing good data
Not just going to a, you know, god, even if, even if, let’s put it this way, even if he went to a pay to play type publication where you have to pay in order to get your manuscript accepted; and he has the money to do this, it wouldn’t take that much, and he were to put out a good protocol, and he were to show us his data, and he would make his, his his stuff accessible to us, then we could validate it, then we could look at it and say, “Yeah, this is good,” or “No, this is the problem, you have to go back and you have to fix this”
Right ?
So we really, every time we talk about the letter that he got, yeah that doesn’t have much to do with anything, really
We wanna see the frickin’ data
And if he had a cure for some cancers that otherwise don’t have reliable treatments, he has an obligation to get that out there anyway he can
And if if peer-review doesn’t, you know, play a, if peer-review can’t do it, you know, isn’t fast enough for him, then he should take it to the web, and he should send copies out to every pediatric, uh, you know, oncologist that there is
That’s the way to do it
Oh I, I I I certainly don’t think that he would put a lot of stock in it, but I, I, I know Dave Gorski enough, he wants this to work
He has patients who are dying, you know
And if if if let’s say that that Burzynski could get ah his gene-targeted therapy to work on breast cancer patients in in a reliable way, that would be, such a help to these people, that that Gorski’s trying to help
And, it it it doesn’t make sense, I mean, there, some of the best um, one of the the most important developments in medical history, was the development of of just washing your hands uh uh before uh uh going in and delivering a baby
Right ?
The guy who did it, was a colossal jerk, but it still worked and it’s the standard now
Right ?
Um, yea, it doesn’t matter now whether or not Burz, whether or not Gorski agrees with how Burzynski publishes
It’s the, it’s the data itself
If if Burzynski is is, is confident in his data, he will put it out there
Right ?
One way or the other
But he is a, the thing is, the thing is, you thing you have to understand is Gorski, Gorski is a genuine expert, in matters re re regarding on oncology studies
I mean, he has a
He, He’s able to convince people, he’s able to convince people, on the strength of his record, to give him money to carry out research
People who know what they’re talking about
To give him money to carry out his research
Right ?
Well what about all the other physicians, um, going back long before the Burzynski thing broke on-line
Of all these patients, with whom they have long-established relationships, and then doctors essentially after years, of treating these patients, basically saying, “I can’t work with you anymore if you go to Burzynski”
What about that ?
Di, are all of these doctors just as biased ?
Did he get burned at some point ?
We don’t know
Yeah, well, you wouldn’t expect Eric Merola to say that he got, that a doctor got burned
Would you ?
But he, he doesn’t have, he hasn’t given us his data
He’s given, he’s given, he’s given case studies
He’s done
Okay
Except for a ph, completed phase 3 clinical trial
Yeah
One of the things, one of the things that I’ve noticed going through these um, well, well there there is that
Uh, Guy Chapman, “It’s a blog, not a peer-reviewed publication”
Um, almost no treatment goes out without trials
Massive amounts of data are required
Um, so, it it is kind of, slightly disingenuous to hold uh Gorski to the same . . standard that you would, it on his blog
I think that professionally he would make, he he he would follow-up on these things, but u what I’ve noticed when you you mention these other people who are working with with Burzynski as co-investigators, the co- investigators don’t seem to have access to these, to these records
Um, you know, when they have to, when a patient has to, and often you have someone like a pediatrician, uh, signing on um uh to eh eh to work with with, uh and arrange care for patients when they’re out of state, away from Burzynski
Um, it’s it’s it’s often not an oncologist
It’s accurate to say that B Burzynski is not a board s uh certified oncologist
It’s accurate to say that no trial has been completed and fully published
Um, yeah it’s um, it it it if, all of the arguing on behalf of Burzynski doesn’t give him a single phase 3
It doesn’t give him um a uh uh of of a completed and and published phase 2
Uh, in in in that sense, you know, uh all the the the, you know, kind of back-peddling and and and trying to defend him is is going to, not going to help his case at all
You are, honestly as far as I can tell you are doing the um, you know, you’re you’re ah throwing up uh, uh, uh, you’re giving me another uh invisible dragon in the garage, um
What is the issue were not talking about
Yeah, but they
But they have track records that support the idea that you should trust them
Okay, so
What you’re telling me is that you trust the FDA to to be able to tell you when he’s not doing, good science, but also that you don’t trust the FDA
Do you see an inherent conflict there ? Well, when I, whenever I would ask about, like, why would these trials aren’t happening uh and, you know, you say well the the FDA’s arranged it
The FDA’s in control
They sign off on these things
But they’re they’re they’re they’re at the same that they’re, they’re trustworthy they’re also not trustworthy depending on what you need for the particular argument at the time
You’re suggesting that they’re untrustworthy
I I would say that the the FDA has given Burzynski every opportunity for decades
Every opportunity
When he didn’t have r r really, he got special treatment as far as I can tell
Uh, the, I’m rather stunned every morning I wake up and don’t see in the paper, that that place has has been closed down
I, I really am
Uh, so, you know, that one doesn’t really fly with me either
Um
Do you know that the FDA pulled out of the prosecution ?
Did you know that the FDA pulled out of the prosecution um of his criminal case, because they were backing a researcher ?
Yeah, the the the it wasn’t the FDA who was pressing charges, it was a Federal prosecutor
Right
And and, they declined to provide information that the prosecution needed
That’s important
That that that’s really important
That he has been given the benefit of the doubt, and he has come up wanting, for decades now
The, no, claims works
He claims works
One of the things I think
One of the things that I think is happening here
One of the things I think is happening here, is that lots of people have worked with Burzynski and then have stopped working with B Burzynski
Uh, you know, uh lots of uh uh uh these partnerships do not seem to work out in the end
I often wonder, if the uh, the way that these things are, are are playing out, because it’s s so reliable that they’re, that these partnerships are going to fail, I I wonder if th they are designed in such a way, that for instance, um a, uh, a a partner would be uncomfortable working
with him
Or um or that the specifications for what it takes to enter one of these trials is so high, that nobody will ever enter the trials
I mean, I wonder if they are, what, especially, like why hasn’t Burzynski left the country ?
That’s what I want to know
Exactly
If he was so, if he was s so persecuted and really cares about getting his treatment out to the world, why wouldn’t he ?
They’re, they’re lots of things going on here
David James has pointed this out, that a lot of questions I’m asking are not going answered
“I still don’t know how long it would take before you would have any doubts about Burzynski”
“I still have no idea, how often we can see patients reporting that signs of getting worse are getting better, before you would change your mind”
I’ve made it very clear that he just needs to have a completed study published and replicated before I support his right to go out and charge people what he’s charging for these, for these drugs, and I’m I’m just not seeing that here with you, and I I wonder what could come from, and don’t worry I will go to your site and I will comment on on on what you’ve run
Um, but, you know, I I I I it’s hard for Skeptics to imagine, what could be gained from engaging with you, if there seems to be no conceivable way, that we can, one, get a straight answer for, how many patients will have to report that getting worse is getting better before you starting doubting your opinion, or, uh, how many uh, uh, how many years does this have to go on before you decide that, “No, we probably just can’t produce the goods”
One of the interesting things about Doubting Thomas that I think you should definitely consider for yourself, is that at some point, when faced with the real opportunity to prove or disprove his assertions, he doubted himself
And that’s important
And that’s where you’re falling short in the analogy
I’ve laid out exactly what it would take for me to turn on a fucking dime
I have, I have made it abundantly clear what I need
Gorski has made it abundantly clear
Everybody else, Guy, and David, and Josephine Jones, uh, the Morgans, all of them have made it abundantly clear, what it would take to change our minds, and you’ve never done that
And even in this, this was an opportunity to do that
To come up with a basis for understanding, where it’s like, you know what, If we can show this, you know, if we can show a this guy, that, that, there, that his standards are not being met, then, you know, we could possibly have some sort of ongoing dialogue after this
Why wasn’t that study
Why wasn’t that , that that that, still . . again, it it doesn’t seem really to to approach the the the, main question here You know, um . . what are the standards that you have that it isn’t, what are your standards to show that it isn’t efficacious ?
Why was the Mayo
Why was the Mayo study delayed ?
Well you said you had so many years before you finish it and go in
Why, why did it take so long ?
I have something for you, okay ?
Send me that
Could you send me that study the way that it was published because um, just just send me the final study, um, to my e-mail address
Um, because, I can ask that question of those researchers, why was this study in this time, and what happened in-between
Why did it take so long for it, for it to come out
Right
Um, but it it would, perhaps, answer the question; because you’re using it as an example on the basis of which to dismiss criticism, whether or not, uh, it is the standard, and therefor you’re allowed to accept that Burzynski hasn’t published until 2016, or, um, it’s an anomaly, which is also a possibility, that most stuff comes out more quickly
I I, yeah, the other thing that David James points out is, you know, why 2016 when he’s had 36 years already ?
Treating people
You would expect the Burzynski Patient Group to be a lot bigger after 36 years, and in fact is
So, if you’re unsure about this stuff, if you’re unsure about the the time to publication, why are you defending it so hard, other than saying, “I don’t know, I really need to”
Uh about the
The reasons, the reasons for which that he’s, no, why are you defending him so hard, when you’re unsure ?
I’ve backed-up everything that
Every time that I’ve tried
and then other people
Way back
It is about
It is about as efficacious
Yeah, I’ve, and and I based that on a a a that type of thing
You, you, you can read that how you want, right ?
There
He does have the accent though
Right ?
No
Alright ?
No, but listen, like, it it it’s not, it, we we don’t understand why you defend himself so hard, when there is such a paucity of of of information out there
Um
Even if it’s true or false you, honestly though
Even if it’s true or false, in in that particular instance, you know, eh let’s just say that you’re right
Gorski gets that point completely wrong
It has no bearing on whether or not, ANP works
That’s a Red Herring
You’re just focusing on this, on this little niggly stuff, where the real question, is does it work ?
Are patients getting better at a better rate then not
or otherwise ?
We’re were talking about whether or not there’s evidence to suggest it works
The FDA, see that’s the thing
You, the FDA are are, you know, you invest them with, we’re just, we’re just circling around again
Uh um, alright
Well, this has gone on for rather a, longer than I thought it would
Um, I, uh, wanna thank you for coming on here
I wasn’t sure that you would actually do it
Um, I’m glad that you did
I’m glad that we talked
Um, I will look at your web-site, and we will, uh, we, uh, you, oh make sure that I I go to your blog and and I talk there
Um
Please do
And I will look at those
Maybe not in the next few days; I’ve got a lot going on but
Alright
Um
I don’t think he is
I don’t think he’s afraid
I just think he’s got a lot going on
He is act, a full-time surgical oncologist and researcher
He does have insane am, he has to pick and choose his battles
And if, if if he saw that we were going to ultimately be circling around our same arguments again and again; kind of like we’ve done here, um, he uh, you, he doesn’t have time for that, I don’t think
Alright
I I would ask that you to to go back over The The Other Burzynski Patient Group and take their stories seriously, because they deserve at least the same amount of consideration that the survivors do
That’s my
That’s my kids, okay Well, Thanks for much for talking
I greatly appreciate it
Alright
Take it easy
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