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
—————————————————————— Pat Clarkson, and I come from Danville, California, which is near San Francisco, and I have multiple myeloma; which is not a common cancer
About 20,000 people in the United States have the disease, and about 10,000 die every year, and 10,000 get the disease
So it’s a relatively small number of folks,that have it
So it’s not well
It’s not as well researched as some of the other cancers, um, but we’re hoping that the, um, Burzynski Clinic can help me
There’s not much hope for me
I, I have probably, a, uh, prognosis of a couple, couple years
Maybe a year or two to live, um, without, um, without I, I, an alternative method of treatment, and that’s why
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If I could say this a little differently
The conventional medicine, or what we would call conventional medicine, which is, you know, chemotherapy, radiation, uh, surgery; which is not possible with, uh, multiple myeloma because there is no, no large tumor that can be surgically removed, uh, the doctors have told us basically there is no cure, and that, and I, I say doctors; this is our local oncologist, um, and the head of oncology at, um, University of California, San Francisco; which is a very well respected school, uh, hospital, that there is no, uh, no reasonable possibility of a cure
Um, by contrast, uh, Dr. Burzynski, we have found out, has, uh, cured several people with myeloma, and he’s cured many other people with different kinds of cancer
The problem is, uh, that the FDA in its wisdom, will not allow us to, uh, be treated with the, uh, antineoplastons that are the backbone of the Burzynski therapy
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Well they’ve told us that they don’t have evidence that it’s, um, that it’s an effective treatment
Uh, that, they don’t have evidence that it’s not, non-toxic; which in fact, uh, is incorrect because the FDA does have evidence that it’s non-toxic
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Through the Senator’s office at the, the FDA is saying that they, they don’t know for sure that it’s not toxic; that’s not true, uh, and they don’t know that it will cure the disease, and therefor they can’t approve it
We’re willing
Pat’s willing to take the odds of a treatment, that is not 100% guaranteed, and let’s face it, most of the treatments that are approved by the FDA, are toxic, and are not guaranteed
So we don’t really understand, uh, why they have an issue with it, except that, uh, there’s an awful lot of money involved
Um, one of the peculiarities of the FDA, we understand they’re, by law, required to get much of their funding from the very companies that they’re supposed to be supervising
As, as I understand, uh, the Constitution, there is no basis in the Constitution for the Federal Government to be telling, an American, who they can use for a doctor or what drugs that they can use for, uh, their, their illness
Yet, over the years this, uh, this power has grown and been accepted at the FDA, and now it’s a, uh, uh, it’s, it’s out of control
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We have asked the FDA what is different about my case
Why I don’t get an exemption
We don’t have a response yet to that, to that question
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While doctors are generally very bright; they have to be to get through medical school, but they don’t have any training in critical, critical thinking, and most of them that I run into are not particularly good critical thinkers
The world they live in is to memorize a set of symptoms, then to look up or remember what those symptoms suggest in terms of a disease, and then remember or look up what the treatment is
So, here we have, um, uh, Dr. Burzynski, who is also a Ph.Dbiochemist, which is a, a interesting and, and very useful, uh, combination, who discovered that, um, in people who have cancer, they generally don’t have, or they have very reduced levels of what he now calls, uh, antineoplastons, and neoplaston is simply the medical jargon for cancer; so it’s anti-cancer, in effect, um, he discover the people who, uh, don’t have cancer, do have, high levels of this, and determined from research that these are controlled by, um, by the genes, and it’s part of the body’s immune system, in effect
We all produce cancer cells everyday of our lives
Like we produce bac, or have bacteria in our gi, digestive tract, that is controlled, by certain genes
In this case, um, he discovered that by, uh, by injecting, uh, or infusing, uh, these, they’re called peptides, peptide, that the patient could be helped
How, how innocuous, or how anti-toxic, can you have
It’s a, it’s a substance th, the body itself produces, unless the genes have shut down
Which is the case in, uh, some, in most, or at least half I guess, of multiple myeloma cases
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My, my message would be that they don’t have the right to tell me to hold a, a life or a death, um, decision
They, they don’t have the right to tell me that, um, I can’t have treatment that I seek, or I will die
I don’t think they have that right to do that
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Treatment is available
Uh, it is our choice
We are free Americans
We’re well informed
Uh, well educated
It should be our choice, and the Federal government in any, in any form should not have the authority to interfere with that
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Uh, nothing’s guaranteed in this world, um, but we’ve got, um, we’ve got some confidence in this clinic and in this treatment
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Pat & Steve Clarkson
January 27, 2012
Houston, Texas
6:25
2/3/2012
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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
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Yeah
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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
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Yeah
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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
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Mhmm
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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
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Yeah
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Uh, so, cynical attitude, but evidence bears it out
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Yeah
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and so we remain cynical until so, until something proves
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Yeah, absolutely
So this is this doctor in, uh, in the 70’s
This is information that he provided
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Yes
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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 ?
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I have no idea
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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?
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To my mom
Probably to mom and dad
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Yeah
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Uh, my mom was the record keeper, and so, she kept the flyer
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Yeah
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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
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Yeah
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but, uh
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That’s ok
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So
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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 ?
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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
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Yeah
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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
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Mhmm
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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
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Mmm
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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
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Mhmm
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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
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Yeah
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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
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Mhmm
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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
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Mhmm
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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
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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 ?
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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
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Doug Olson chats with Pete Cohen
January 2011
25:00
11/9/2012
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Dana-Farber Cancer Institute Board of Directors MemberJames Rappaport discusses Dr. Burzynski and The Cancer Industry
—————————————————————— “When you look at what is going on and how Dr. Burzynski’s being handled, it is clearly a function of, (?), anytime you have big business, big government, big labor, Big Pharma, Big Cancer Industry, whatever, they become so, wrapped up in protecting the institution; whatever it is, that they forget what their fundamental job is, you know, and what’s happened with Big Pharma and, and Big Cancer, is they kinda, you know, they’ve forgotten to be curious that there might be other op, opportunities and options out there, and they’re focused on protecting their turf”
—————————————————————— 00:41 – Peer-review chauvinism
—————————————————————— “Most of the stuff is peer-reviewed, in order to get into, the starting gate, of their process”
“Well, if you’re all of the peers, are vested in one piece of the business, something new, is frightening, and is not going to be given the same shot, as something that’s within the construct of what they’re used to”
“That’s the problem, uh, and the idea that something different; less catastrophic to the body, um, could possibly, uh, work, would upset all of their training, all of their thinking, and, it, it’s very hard for them to, to to do that”
—————————————————————— 01:24 – The anointed Evangelical Guardians of the Status Quo
—————————————————————— “The doctors I know and, and the clinicians I know, and, and these people are evangelical”
“I mean, they are hugely, vested and invested, in doing what they believe is very important and good work”
“It helps them get up in the morning, to go to work”
“So, folks who are, invested that kind of, uh, you know, zealous way, you know, are going to look at anything that isn’t within that, that, that, that vision, you know, they’re going to look askance at it”
“They’re going to look at, say that, that, that’s really weird, or, that’s a charlatan”
“What they were in essence saying is, that if you do, the Burzynski treatment regimen, you are foregoing the treatments that we know and understand, and thus we can’t, guarantee that you’re going to have a success”
“Well, you can’t guarantee that you’re going to have a success with chemotherapy, or the normal regimens of chemotherapy“
“So, they came from a place of saying: ‘We are protecting you from going down and taking a, uh, the placebo approach,’ which is the way they look at it”
“The fact that it’s been effective, and the fact that, uh, you know, when you go through the numbers, uh, and the analysis, and you go through, uh, that if you’ve not gone through chemotherapy, and you go through the Burzynski’s treatment your odds are 2 or 3 times as high, even if you have gone through chemotherapy it’s 1 or 2 times as high”
“You know, those are, un, those are high enough numbers to push the needle, and, oh by the way, it’s less expensive, than Big Pharma“
—————————————————————— 02:56 – Protecting the business at all costs
—————————————————————— “Which is another big piece”
“Big Pharma is protecting a huge, multi-billion dollar business, and they’re going to protect it to the death, even, to the adverse impact of patient outcomes”
“They won’t say it that way, and, but that fact of the matter is, if you’ve got an approach out here which could be significantly, less costly, and significantly less adversely impact-full, to the patient, um, then you’re gonna, um, you, you, you can understand why they’re, to doing”
“You don’t have to agree with it, but you can at least understand why they’re taking the position that they’re taking”
—————————————————————— 03:34 – The fiber of an innovator’s background
—————————————————————— “I think that what is amazing is that Dr. Burzynski has had a vision, and a passion, and a zeal, for 40-odd years, put up with being called everything, short of, and probably even including ‘Witch Doctor,’ um, because of his firm belief that he can save people’s lives, and, and what that says about his character and his just his, the fiber of his backbone, to, um, to be willing to take that on”
“You know, you’re talking about a man who spent the last 40 years, um, you know, working on, on a different form of treatment that is more patient friendly, than chemotherapy“
“You know, I explain to people about, you know, what chemotherapy is”
“What chemotherapy is, is putting poison in your body”
“Killing everything that is fast-growing in your body”
“Starting first with cancer cells”
“Then next with white-blood cells”
“Then with your hair”
“Then with your, you know, the inside lining of your mouth”
“Um, then your fingernails”
“I mean, you know, that, that’s what it’s meant to do, and what you essentially do is you give this chemotherapy to, as much as a person can take, uh, uh, uh, in order to, you know, in, in, in order to get out the other end where’ve you’ve killed cancer and hopeful not everybody else or the patient”
“That’s what it is”
“So, if you’ve got a different approach, which is, essentially is saying, well, you know, we’re not, we’re gonna go in and stop the cancer cells from growing and we’re going to actually, and, uh and work on shrinking them, without the ancillary effects, is pretty powerful, you know, and, uh, and you would think that, that, that, the Big Cancer Industry would say: ‘That’s something we outta be looking at'”
Burzynski needs to be given the right to prove the efficacy of his treatment, and if he can, uh, show that his treatments are as or more effective, and / or, significantly better for the patient, with better patient outcomes and, and limited side effects, he’s gotta be given that opportunity to compete out in the marketplace”
“That’s what America’s about”
====================================== 12/4/2013 – Jim Rappaport, Board Member of Dana-Farber Cancer Institute discusses Dr. Burzynski and the obstacles he faces within a Cancer Ind (5:49)
——————————————————————
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This telephone interview with Dr. Burzynski was held in December 2002. The purpose of the interview is to inform people about Dr. Burzynski’s cancer treatment, Antineoplastons. It will be circulated for free on the Internet. I have no affiliations with Dr. Burzynski either personally or professionally.
Hello Dr. Burzynski. I would like to thank you for taking the time to inform people about your cancer treatment Antineoplastons, and your experiences in the area of cancer over the last 25 years.
Is it true that you were the youngest person in Poland in the 20th century to earn two advanced degrees, an M.D. (Medical Doctor) and Ph.D. in biochemistry at only 24?
I’m not sure if I was the youngest, I was among the youngest. In Poland, its 15 years average (Gavin. For a Ph.D.) after you receive an M.D.
What motivated you to come to the United States? When did you arrive here?
Well basically freedom. You see, I could easily stay in Poland. I was a prominent student, one of the best they ever had in medical school and certainly if I would become a member of the Communist Party I would accomplish a lot in Poland. But I didn’t want to be a Communist and after I declared, “forget it, I’m not going to be a Communist”, they persecuted me. So, practically, it would not be possible for me to do any research in Poland. I arrived in the United States on the 4th of September 1970.
You began working at Baylor College of Medicine in Houston?
I was not employed for 6 weeks, then I got the appointment at Baylor in the position of research assistant. A couple of years later I became Assistant Professor.
I have read that your cancer research was motivated by your observation of a cancer patient in Poland that was missing a particular peptide in their blood, is this correct?
Well Yes. First I discovered some peptide fractions in blood and then I was trying to determine their significance. This means that I was screening the blood samples from people who suffer from various illnesses, among them cancer patients. I found some remarkable changes in concentration of these Peptides in cancer patients. Basically there was a great deficiency of these Peptide fractions in the blood of cancer patients.
What are peptides and how did your research develop from there to developing Antineoplastons?
Peptides are chains of Amino Acids, so if you put together 2 Amino Acids, you have a Peptide.
You have said, “Cancer is really a disease of cells that are not programmed correctly. Antineoplastons simply reprogram them so that they behave normally again.”
They do, but we are not really interested in making normal cells out of cancer cells. What we are interested in is correcting one basic difference between cancer cells and normal cells, and this is the mortality of normal cells and the immortality of cancer cells. Cancer cells are immortal. And if you change them into mortal cells again they will die and the tumor will disappear.
I read a humorous part in Daniel Haley’s chapter about you in his book, “Politics in Medicine.” He says that initially you derived Antineoplastons from your friends blood, but had to change because your friends stopped coming around, is that correct?
Certainly it was difficult to obtain a lot of blood for the research. It was a necessity to look for a source that is widely available. I realized from the very beginning that once I use urine, my critics will use this against me; try to just smear me, “That’s the doctor who is using urine to treat cancer.” But there was no other way to do it.
There are plenty of ignorant remarks about your treatment because it used to be derived from human urine. The process you use now does not involve collecting human urine. Please describe the complete process you use.
Ever since 1980, we are using synthetic analogues of Antineoplastons, made in a state-of-the art biomedical manufacturing facility. These have nothing to do with urine or blood.
Would you describe Antineoplastons as natural?
They are natural of course, they exist in our body.
Your treatment does require a strong commitment from your patients as they must be infused with Antineoplastons for many weeks or months, is that correct?
But most of our patients are taking oral formulations. I would say that perhaps 15% of our patients are taking intravenous infusions of Antineoplastons; the rest take capsules or tablets.
The patients who have the most advanced type of cancer will require heavy dosages. There is a limitation of how much medicine you can take by mouth. Fifty or sixty tablets a day, that’s pretty much all you can take by mouth. But if you give intravenous infusion you can deliver the equivalent of 3,000 tablets a day.
You went into private practice in 1977. How was this funded?
Well, I started private practice in 1973. It was not necessary for me to have any funding, because I joined with other physicians.
Is it true that Dr. Mask at a hospital in Jacksboro, Texas ran your first human clinical trial? What types of cancers did you treat? What were the results of these trials?
I would not call it a clinical trial, because only two patients received initial treatment. They were very advanced, close to death and unfortunately, both of them died. But these cases were not lost because we found we can administer Antineoplastons without having bad side effects.
What is the general side effect experienced by your patients when using Antineoplastons? Does it damage the immune system as chemotherapy does?
We are not talking about one medicine; we tried 12 different pharmaceutical formulations. Basically it depends what formulation we use, but when we give them orally, we see practically no side effects at all. Patients may develop skin rash, which may last for a day or two.
But, when we give large dosages intravenously, we have to watch fluid balance…and electrolyte balance. We don’t see any delayed toxicity once the treatment stops. Everything practically goes back to normal within say a day or two. It does not even come close to the adverse reactions that you experience with chemotherapy.
What is the cost today for a patient using your treatment in a pill form and do insurance companies pay for it? *
Well basically, we do not charge patients for medicines, Antineoplastons are given free of charge. What we are charging for are supplies, and we are charging for standard services such as office visits, nursing services, Lab tests, consultation, evaluation etc. And these services are priced the same way as the average medical services, and they are covered by the insurance.
*(Gavin. Insurance companies will rarely pay for Antineoplastons, which is considered an experimental treatment. It also depends on the type of insurance plan someone may be on.)
So if a patient were using the pills, what would it normally cost per month.
About $2,000 a month.
Antineoplastons is most effective against brain cancer, is that correct?
Well, it’s not really correct. Because brain tumors are very difficult to treat, we concentrate our efforts on the toughest type of cancers. Out of our clinical trials, we have eight that came to the final point, which means they proved that there is some efficacy, and six of these are in various types of brain tumors. But there is another clinical trial, which deals with advanced colon cancer, which also proved efficacy and another one with liver cancer. But we still need to wait a little longer to have a larger number of patients treated and then statistically find out if this is going to work.
Basically the treatment works when we have involvement of the gene, which can be activated by Antineoplastons, and such genes, like gene p 53, are involved in 50% of all cancers. The treatment turns on gene p 53. So it has more to do with what kind of gene the patient has in his cancer cell, rather than the type of cancer.
Is there a special diet to follow when using your treatment?
Yes, since we are expecting there may be some changes in minerals, we usually emphasize a diet that is relatively low in sodium. We treat every patient individually. Every patient has a consultation with a dietary expert who tries to individualize his diet
Is your treatment being used in any other countries?
Yes, we have people coming to us from all over the world. I think we can probably count easily 70 to a 100 countries from which people are coming. But the main effort is now in Japan, outside the US. In Japan there are 2 clinical trials being conducted by Japanese doctors. Also, a group of doctors in Mexico obtained approval from the FDA and Mexican government to do clinical trials.
Now I have several related questions about brain cancer in children.
Dustin Kunnari and Dr. Burzynski. Dustin is one of Dr. Burzynski’s great success stories.
Dustin had brain surgery at 2 ½ years old. The surgery removed only 75% of the tumor.
Dustin’s parents, Mariann and Jack, were told that Dustin would only live for 6 months. Chemotherapy and radiation may extend Dustin’s life slightly, but at a very high cost in quality of life with very serious side effects.
Mariann and Jack decided to look into alternatives. They found out about Antineoplastons and after only 6 weeks of intravenous treatment, Dustin’s MRI showed he was cancer free.
One year later another tumor appeared on the MRI. By this time Dr. Burzynski had developed a more concentrated form of Antineoplastons. After 5 months the tumor was gone. Dustin has remained cancer free ever since and was taken off Antineoplastons when he was 7. Dustin is 12 today.
About how many children suffer from brain cancer in the US each year?
The statistics are available for 1999. The new cases of brain tumors in children were counted as 2,200. Now around 3,000, I would say.
Approximately what percentage of children is still alive after 5 years using orthodox treatments for brain cancer?
It depends on the type of tumor and it’s location, some of the toughest are those that are located in the brain stem. Up to 5 years, you have practically no survival when you use the best treatment available, which is radiation therapy. Chemotherapy usually doesn’t work for such patients. After 2 years, 7 % survival. After 5 years, practically none.
Dustin, after brain surgery.
To further complicate matters, Dustin’s oncologist kept threatening his parents with a court proceeding to take Dustin away and force him to take Chemotherapy/Radiation treatment.
This continued for a year, even after Dustin’s success with Antineoplastons.
You may also e-mail Mary Jo Siegel, the lady who runs the web site. Mary is also a cancer survivor using Antineoplastons.
maryjo@siegel.net
Is it correct to say you have had very good results when treating brain cancer in children?
Yes we have. I gave you the example of the toughest, which is located in the brain stem. We get about 40% survival rates after two years. After 5 years at the moment we have about 20% survival rate. The reason is that most of the patients who come to us, have received prior heavy radiation therapy, or chemotherapy. They usually die from complications from these treatments. Those who survive the longest are patients who previously did not receive radiation therapy or chemotherapy. The longest survivor in this category is now reaching 15 years from the time of diagnosis; and she’s in perfect health.
With the more common variety, which is aciotoma located outside the brain stem, we get much, much better. We have 75% of patients who are objectively responding to the treatment. This means that the tumor will disappear completely or will be reduced by more than 50%.
This is another strong point. It’s extremely important. Children are usually damaged for life after radiation therapy, when we can avoid it and bring them back to life.
What criteria must parents of children with brain cancer meet before being able to have their children treated by you?
Well, practically all of these brain tumors must be inoperable. This means that it’s not possible to remove them with surgery. Except for one category, they should have advanced disease. The tumor should have the size of more than 5 mm in diameter and be located in a place that cannot be operated upon.
There is one category of these tumors, medulloblastoma, where the FDA requires that the patients would receive prior standard treatment and fail before we can accept them. In the rest of these children we can accept them without failure of prior treatment.
You may also e-mail Mary Jo Siegel, the lady who runs the web site. Mary is also a cancer survivor using Antineoplastons.
maryjo@siegel.net
Let us talk a little about some of your most successful stories using Antineoplastons with children. Probably the most remarkable case is that of Tori Moreno . In August 1998 Tori was diagnosed with a stage 4 brainstem glioma that was inoperable. Her parents were told she would die in a few days or at the most, a few weeks. When did you start treating her?
Tori had Stage 4 brain stem glioma. The tumor was too risky for surgery. She was diagnosed shortly after her birth. The tumor was very large, about 3 inches in the largest diameter and located in the brain stem. Her parents consulted the best centers in the country and they were told there was nothing to be done. So finally she was brought to us, when she was about 3 ½ months old. This was in October 5 years ago. She was in such condition that we were afraid that she might die at any time. Fortunately she responded, and about 5 months later we determined that she obtained a complete response, which means complete disappearance of active tumor by
MRI criteria. She is a perfectly healthy child and tumor free. She still takes small dosages of capsules of Antineoplastons, but we will discontinue this shortly.
Tori Moreno 9.28.98. Temporarily enlarged due to taking Decadron.
Tori’s parents were told there was nothing that could be done for her and she would be dead in a few weeks.
Tori is alive and well today thanks to Antineoplastons. See photo below.
At the end of this interview, there is a short interview with Kim Moreno, Tori’s mother.
Kim Moreno has set-up a Yahoo e-mail account to answer peoples cancer related questions.
kimmoreno5@yahoo.com
And today she is over 5 years old?
Yes, she’s 5 years old and living a pretty much normal life.
Tori 22.10.02. A perfectly healthy child. Orthodox treatment consists of high does of radiation therapy and possibly toxic chemotherapy as well. Most of the children are dead in a few years. The ones that survive suffer from permanent retardation, along with other serious side effects from the radiation.
Please do not forget about the interview with Kim Moreno, Tori’s mother, at the end of this interview.
But mainstream medicine has been trying to kill the cancer cell using chemotherapy and radiation, is that correct?
That’s right, yes.
Chemotherapy and radiation cannot differentiate between healthy and cancerous cells?
They can differentiate to some point, but basically, this difference is very small, so ultimately, the normal cells will be killed.
Is that why they have such a terrible effect on the immune system?
That’s right, not only the immune system, but also many other systems in the body. Practically, the treatment is destroying healthy parts of the body.
Chemotherapy and radiation also cause cancer, don’t they?
Yes. For instance right now we see a lot of patients who in childhood were successfully treated for leukemia or for Hodgkin’s disease. Then they develop cancer that is practically incurable, like lung cancer, breast cancers; I even encountered a patient in my practice that developed three different types of cancers, and was only 28 years of age. First she was treated for Hodgkin’s Disease, then she developed bone cancer in the places which were radiated for Hodgkin’s Disease, and then she developed breast cancer after that; it’s really horrible. So there is increased incidence of secondary cancers in patients who were treated previously with chemotherapy and radiation.
Shontelle Huron. In remission for several years after using Antineoplastons.
You may also e-mail Mary Jo Siegel, the lady who runs the web site. Mary is also a cancer survivor using Antineoplastons. maryjo@siegel.net
Ric and Paula Schiff write about the torture their daughter Crystin had to endure during chemotherapy/radiation treatment.
Crystin was diagnosed with perhaps the most malignant tumor known, which is a rhabdoid tumor of the brain. Of course, historically, there was no case of such a tumor ever having a long response to chemotherapy or radiation therapy. She received extremely heavy does of radiation therapy and chemotherapy, because nobody expected that she would live longer than a year or so. So unfortunately she was terribly damaged with this. She responded very well to Antineoplastons. We put her in complete response. But unfortunately she died from pneumonia. Her immune system was wiped out, so when she aspirated some food, she died from it. The autopsy revealed that she didn’t have any sign of malignancy.
But there are also likely permanent severe health concerns related to taking chemotherapy and radiation.
In young children there is permanent damage to the brain. Unfortunately some oncologists who are dealing with such cases are really cruel to the parents, because they are saying, “well, your child will survive, but you are going to have a jolly idiot for the rest of your life.”
Is it true that if parents refuse chemotherapy/radiation treatment for their children the hospital, via the courts, could have the child removed from the parents care and forced to take chemotherapy/radiation treatment?
Yes, unfortunately in some States, the law may require taking children away from the custody of the parents to send them to such treatments.
Jared Wadman. In remission for several years after using Antineoplastons.
You may also e-mail Mary Jo Siegel, the lady who runs the web site. Mary is also a cancer survivor using Antineoplastons.
maryjo@siegel.net
Isn’t this what happened to Donna and Jim Navarro when they chose your treatment over orthodox treatments?
That is correct. Thomas Navarro was diagnosed with medulloblastoma. He was operated on and the tumor was removed. Then he was scheduled for radiation therapy. Since he was only 4 years old, the parents knew that he’d be damaged by radiation therapy. Nobody at his age survives this type of tumor anyway after radiation therapy. So that’s why they decided to come to our clinic. Unfortunately I could not treat him because FDA requires failure of radiation therapy for such patients.
And tragically he died in November 2001.
What happened was, the parents decided not to take any treatment. We asked the FDA several times to allow administration of Antineoplastons, because we have already had successful treatments for some other children without any prior radiation. Then ultimately he developed numerous tumors in May the following year. Then we suggested to the parents of Thomas, that if they are not going to take our treatment, they should go for at least chemotherapy. They went for chemotherapy to one of the best centers in the country, to Beth Israel Hospital in New York. The chemotherapy was successful, but he almost died from it. It severely affected his bone marrow. I remember a phone call from Thomas’s father telling me that the doctors are thinking that they won’t do anything else for him and that Thomas will die within a week because of severe suppression of bone marrow.
But I encouraged his father to do whatever is possible because such patients may turn around. Fortunately he turned around, but about a month or two later he developed 15 tumors in the brain and the spinal cord. Then, when he was close to death, when nothing was available for him, the FDA called us and told us now we can treat Thomas. When we treated Thomas he survived 6 months, and the tumors had substantially decreased, but ultimately he died from pneumonia.
Is it accurate to say that the initial orthodox treatment for brain cancer is surgery to remove the tumor?
If the tumor is located in the proper part of the brain. For some locations it is out of the question. But, you are right, that is the first step.
Does surgery alone ever cure a patient with brain cancer?
Well, some cases, with benign brain tumors, when the tumor can be completely dissected, yes, it’s possible. But in most cases it’s not possible.
How much of a risk does surgery present regarding spreading the cancer more quickly and other complications?
Well, not so much regarding spreading the cancer more quickly in the case of brain tumors. Such a spread may happen only with a small percentage of brain tumors that have the highest aggressiveness. But for most of the patients the tumor is not going to spread just because of surgery. Certainly surgery may damage the brain and patients may even die during the surgery. It’s not the ideal thing to do of course because you are removing the tumor and you are removing a healthy part of the brain at the same time. The patient may be permanently damaged by such procedures.
Would you warn against rushing into surgery in light of how effective your treatment is? Would you most times recommend trying your treatment first?
We really would like to know what we are dealing with. This means that we would like to have at least a biopsy; if by chance it’s not going to create sufficient risk for the patient. If the tumor was located in such a place in the brain where surgery is possible, then certainly we could try to remove the tumor. But I think it would be best if we can treat the patient with brain intact and get rid of the tumor completely, because then we risk the least damage possible.
Now I will turn my attention to your legal battles with the FDA. They began in 1983 when they sued you in civil court, is this correct?
In 1983, that was the first court battle with the FDA. The FDA sued us. It took about 6 weeks in court and again, we won.
Then there was an enormous raid by the FDA at your offices on July 17, 1985. What was the reason for this raid?
We were never given a reason. I think there was a concentrated action against a few alternative medicine centers because at the same time there were similar actions in the Bahamas and in some other places.
In the four court cases the FDA has brought against you, have any of your patients testified against you?
Well, on their own will, nobody testified against us. But the FDA encouraged some of our patients, and threatened them in various ways. They forced them to come to the witness stand. But really, once they were on the witness stand they behaved more like our witnesses, not FDA witnesses.
According to Daniel Haley, after the FDA lost its last court case against you in 1997, Congressman Richard Burr said it was “one of the worst abuses of the criminal justice system”. Did Burr ever speak to you about it?
Yes, we talk with Congressman Burr. I believe he is right, because certainly there was no reason for such massive action on the part of the FDA. They knew that the treatment works; that the treatment helps patients, that the patients will die if they win, so they should not do it. All of this was with the taxpayer’s money.
So the FDA has wasted many millions of taxpayer dollars trying to convict you on false charges of transporting Antineoplastons across State lines. What was the motivation for this vendetta?
Well, it’s hard to tell, because it was never properly investigated; why they did it. But, we have some leads. For instance, on one side you have a large pharmaceutical company, which was very interested in getting hold of our patents; this is Elan Pharmaceutical. It happened that I treated successfully a close relative to the CEO of Elan. Elan became very interested in what we have. They came close to signing a final license agreement. But after they learned what we have, they decided to withdraw and then suddenly the FDA and NCI gave their full support to Elan, to do clinical trials with one of the ingredients of Antineoplastons, phenylacetate.
This was a large pharmaceutical company that was trying to appropriate my invention. On the other hand, within the FDA and NCI you have had people who were working closely with this company. For instance Mary Pendergast, who was responsible for the legal action against us, became Vice President of Elan. Also Doctor Michael Friedman, who was initially in charge of NCI cancer research, and who knew that our treatment works, later became commissioner of FDA and he did whatever he could to put us out of business. Not only that, but to simply destroy me.
On the other hand, suddenly the government decided to file for the patents, which claimed the same thing that our patents did. Never in the history of the United States do you have the issuance of two patents for the same invention. It was really a breach of patent procedure. The patent office allowed them to patent something I invented, and which I patented. And dishonest scientist Dr. Dvorit Samid, who initially worked for us, was receiving funds from us and finally went for the higher bidder (Elan).
So you have a lot of leads, which indicate that there was something between the government, dishonest scientists like Dvorit Samid and the large pharmaceutical company, Elan. And it was in best interests for them to get rid of me, destroy me, so they could appropriate my discoveries and benefit from that.
When did you initially apply for your Investigational New Drug (IND)?
We applied in May 1983.
When did you receive it?
Well, it took an extremely long time. Ultimately most of our clinical trials began in 1996, a long time after that. FDA did not allow us to proceed with clinical trials for an extremely long time. Please click here to read the
conclusion of this interview
E-mail this sites address to someone and help spread the word
You may also e-mail Mary Jo Siegel, the lady who runs the web site. Mary is also a cancer survivor using Antineoplastons.
maryjo@siegel.net
It is important for everyone to understand the economics of the drug industry. I have heard that the cost today for bringing a drug to market is upwards of 500 million and takes about 12 years, is that true?
Yes, you’re right.
The drug company is then given a 17-year patent so that it can make a profit on the drug. It is little wonder the drug companies fight against natural treatments such as Laetrile, because they are unable to patent them and they pose a serious threat to their profit margins. But you are able to patent your treatment, so why was there no interest in it from the drug companies?
Basically you have 17 years from the time when you have approval of the patent and this is independent from FDA’s approval process. You file the patent, once you make a discovery, and then you go through FDA procedure. You spend say 12 years or 15 years for the approval process, then you have only 2 years license from the FDA, because license is going to expire in another 2 years. Certainly the pharmaceutical companies are spending a lot of money in this process.
In our case I decided to develop this on my own, to generate money from my private practice and use the money to support the research of Antineoplastons. Again we were approached by many different pharmaceutical companies, which were interested in working with us. Certainly after the bad experience (with Elan) we are very cautious with whom to deal. On the other hand pharmaceutical companies were afraid of action from the FDA.
The NCI put off testing Antineoplastons using the fact that it failed their standard P388 leukemia mouse test, is that correct?
Yes
What is the P388 leukemia mouse test and why did Antineoplastons fail it?
Well we had informed the NCI that this was a bad type of test for antineoplastons. Antineoplastons seems to be specific for species. Different animals have different antineoplastons; mice have a different composition of antineoplastons than humans. Practically, human antineoplastons may work well in humans, but they may not have much activity in mice. We knew this, even before the NCI began testing. On the other hand we didn’t have good results at all in the acute form of leukemia and we didn’t even accept such patients. It was known that if they only do this type of test, it was not going to work. They still tested and used this to say that Antineoplastons don’t work against cancer. Certainly the fact that something works or doesn’t work against mice leukemia is irrelevant.
I’d like the reader to bear with me in the next few questions, as the point will become clear. One of the chemicals you identified in the peptides was phenylacetate. But it was far inferior to the others and you chose not to patent it, is that correct?
This is not a peptide, this is a metabolite of our antineoplastons and it’s an organic acid. So this is a final metabolite of antineoplastons. It has some anti-cancer activity, but the weakest of all antineoplastons. We knew about it and that’s why after some preliminary experience in the treatment of phenylacetate back in 1980, we decided that it’s not worth pursuing this and then we used antineoplastons that have higher activity.
But didn’t you later find out that the NCI actually holds the patent for phenylacetate?
You’re right. NCI is the owner of the patent, Dr. Samid is the author but Elan has the license to use these patents. All of these three work together.
Why did the NCI patent something that was far inferior to your other Antineoplastons?
Because they knew that this was the only chance that they can get hold of something which has to do with antineoplastons.
The NCI ran clinical trials on phenylacetate in 1992 and found it to be worthless, is that correct?
Well, the clinical trials began in 1992 but it took a few years to have the results. It shows some effectiveness in brain tumors and in prostate cancer. But of course it was far away from the results that we can get with antineoplastons.
When did the NCI eventually start clinical trials of Antineoplastons?
In 1994.
I assume you gave the doctors running the trials all the information about correct dosages, is that true?
Yes, well, basically they used dosages that were 50 times lower than what we feel are effective dosages. We have some patient’s relatives who were present when the treatment was administered. Formulations of antineoplastons were badly diluted. This means that the patient was receiving very little antineoplastons and some of these patients were removed from the treatment after a short period of time because they were overloaded with fluid. Well normally we see fluid overload in perhaps less than 2% of our patients. So it makes sense that perhaps the formulations of antineoplastons were diluted and when the Mayo Clinic (1999) determined the concentration of antineoplastons in blood, we realize that it was something like 50 times lower than what it should be.
Do you think the NCI purposely sabotaged your trials?
I have no doubt about it. They sabotaged the trial; they accepted patients who were too advanced. Their main effort was to give a low dose of the medicine for a short period of time and to stop treatment just for some minor problem, like if a patient developed a skin rash. They were trying to give the treatment only for a very short period of time, like for instance a couple of weeks or a month. And then of course the patient was dying after that. It was completely unethical, it was horrible. As you probably heard recently, the pharmacist who was diluting an anti-cancer drug, was sentenced to 10 years in prison. I think the same should happen to these guys who really were trying to use this for their political manipulations.
Jessica Kerfoot. In remission for several years after using Antineoplastons.
You may also e-mail Mary Jo Siegel, the lady who runs the web site. Mary is also a cancer survivor using Antineoplastons.
maryjo@siegel.net
How much influence do the pharmaceutical companies wield in medicine in the US?
Extreme influence. Most of the oncologists, I’m talking about reputable oncologists, they work for pharmaceutical companies, they work in clinical trials, they receive various type of incentives from pharmaceutical companies. And basically these doctors are approving medicine, FDA may approve the medicine, but finally this advisory board may advise FDA to go ahead with this or do not approve that medicine. So really the doctors who are deciding if the medicine should be approved or not, practically all of them have some type of relation with large pharmaceutical companies.
Is there a conspiracy to suppress other treatments or is it just a case of avaricious businesses, the pharmaceutical and hospital industry’s, doing everything in their power to protect their bottom line?
Well certainly they have a lot of power. When I filed my application for IND, the standard FDA policy was such that they would never approve a new drug for an individual owner, only for the large pharmaceutical companies. And that’s why I believe we waited for such a long time to receive the go-ahead for our clinical trial. So certainly there were obstruction tactics. Whether this is a conspiracy or not is hard for me to tell. As you can see, the leads which I presented, like for instance a researcher who worked for me initially and then decided to go to the higher bidder, which was a pharmaceutical company; then the relationship between the pharmaceutical company and governmental agencies. All of this indicates that there is some type of conspiracy. I think a Congressional committee should study this.
Turning our attention to the doctor/oncology profession. When reading Thomas Elias’s excellent book, “The Burzynski Breakthrough”, I was struck by how many times patients said that their oncologists were aggressively opposed to them taking your treatment.
Even after a patient’s success with your treatment, very few doctors give you the credit. Is this due to jealousy, arrogance, plain old denial or something else?
Probably a lot of arrogance. We have some prominent specialists, the best specialists in the world who really acknowledge our results and would like to work with us. On the other hand you have some doctors who hate to see a patient with success on our treatment. The fact that the patient is coming to their office, years after the patient should be dead, is something like a slap in the face. They hate it.
They will do everything they can to lie, to obstruct the information about this patient. We have a lot of evidence that oncologists were lying about the patient’s condition. For instance the patient recovered completely from highly malignant cancer and the oncologist was telling us the patient died from cancer. So certainly, we have a lot of evidence about some of these doctors who are dishonest, who are liars, who cheat. But on the other hand you can’t really put the same label on the entire profession. There are many other doctors who are honest and who like to know about what we have. Of course our clinic has board certified oncologists who are taking care of our patients.
I found an interesting quote by David Stewart, a philanthropist who helped fund Gaston Naessens cancer research in the 70’s. He says,
“I can say categorically that most scientific researchers with whom I have had to deal are highly opinionated, arrogant, condescending, and have built-in, insurmountable prejudices.”
Would you agree with these sentiments? What have your experiences been?
Well certainly, I think he’s right; unfortunately that’s the truth.
We spoke about Crystin Schiff briefly before. This is a particularly despicable story, because when Ric Schiff asked Dr. Michael Prados, then head of neuro-oncology at University of California at San Francisco Medical Center (UCSF), if he knew of any other treatment besides chemotherapy/radiation for Crystin’s brain tumor, Prados replied in the negative. But a few years before, he had sent you 14 letters documenting the effectiveness of Antineoplastons on Jeff Keller, another patient with brain cancer. Is this story true?
Yes, it’s true; of course Jeff Keller had an extremely malignant brain tumor. He had a high-grade glioma of the brain; he failed radiation therapy and additional treatments. He responded extremely well to our treatment. He was one of the patients whose case was presented to the NCI. So there was no doubt about his response. Dr. Prados knew about it. If he was dealing with a hopeless tumor like Crystin Schiff, why didn’t he call us?
Ryan and mother Cindy. Ryan is in remission for several years after using Antineoplastons.
You may also e-mail Mary Jo Siegel, the lady who runs the web site. Mary is also a cancer survivor using Antineoplastons.
maryjo@siegel.net
Do you know why Prados did not tell them about Keller’s success with your treatment?
It’s hard for me to tell. It happens that Dr. Prados and Dr, Friedman, who became the boss of the FDA, came from the same medical school. So they work closely together, and perhaps there is something to do with the general action against us. It would be inconvenient for Dr. Prados to say that the treatment works if FDA was trying to get rid of us and when his friend was Commissioner of the FDA at that time. Perhaps that’s the connection….
One of your greatest critics is Saul Green (Ph.D. Biochemistry), a retired biochemist from Memorial Sloan Kettering. In 1992 the Journal of the American Medical Association (JAMA), published Green’s article, “Antineoplastons: An Unproved Cancer Therapy.” What were his conclusions about Antineoplastons?
Well, Green is not a medical doctor, he’s a retired biochemist; he never reviewed our results. He got hold of some of our patents and that’s what he based his opinion on.
He was hired by another insurance company (Aetna) that was in litigation with us. He’s like a hired assassin. Not telling the truth. So really to argue with him is good for nothing. Even if something were completely clear he would negate it. He is simply a guy who was hired by our adversaries. He would do whatever they paid him to do.
Paul Leverett was diagnosed with a glioblastoma multiforme grade 4 brain stem tumor in May 1999. The prognosis was that he would probably be dead before the end of 1999. Orthodox medicine gave him no hope of survival.
Paul was given the maximum amount of radiation he was capable of receiving. It slowed the tumors growth slightly, but this did not alter Paul’s prospects for survival at all.
After completing some research on the Internet Paul learned about Dr. Burzynski’s Antineoplastons. Paul began taking Antineoplastons intravenously, administered by his wife, in September 1999. After 6 weeks Paul’s tumor had grown by only 2 %, Glioblastoma’s normally double in size every 2 weeks.
A PET scan in December 2000 confirmed that Paul was in complete remission. He stayed on Antineoplastons until August 2001 to ensure the tumor would not reoccur. There is just under 20% tumor necrosis remaining in his brain stem, which is probably scar tissue.
Paul’s oncologist (at MD Anderson, Houston) initially wanted to show his scan’s to his hospitals (MD Anderson) tumor review board. But then, for whaever reason, he refused further contact with Paul and did not go ahead with it.
The photo was taken with his wife Jennie. Paul had a web site created in order to inform people about his cancer experiences. http://www.dontevergiveup.com
E-mail: pjleverett@ev1.net
Did Green ask to look at your patients’ files or even talk to any of your patients themselves?
No.
You responded with an article with 137 references, did JAMA publish even part of it?
JAMA refused to publish the article. They decided that they would publish a short letter to the editors. And obviously this is another dirty thing, because letters to the editors are not in the reference books. If you look in the computer and try to find letters to the editor from JAMA, you’ll never find it. So people who are interested will always find Green’s article, but they will never find our reply to Green’s article, unless they go to the library. Then they can look in the JAMA volume in which the letter was published, and then they will find it. So many doctors were asking me why I did not respond to Saul Green’s article because they never found my letter to the editors.
Are they obligated to publish your rebuttal?
Certainly they are, because they put Green’s article in JAMA in the first place, they accepted it without any peer review and then they did not allow me to honestly respond to it. I should be allowed to publish my response to the article in JAMA.
At the time of the publication Green was working as a consultant to Grace Powers Monaco, Esq., a Washington attorney who was assisting Aetna insurance agency in its lawsuit against you. What was the Aetna lawsuit about?
One of our patients sued Aetna because Aetna refused to pay for my treatment. Then Aetna got involved and Aetna sued us. Aetna really became involved in what you can call racketeering tactics because they contacted practically every insurance company in the US. They smeared us, they advised insurance companies to not pay for our services. So based on all of this, our lawyer decided to file a racketeering suit against Aetna. This was a 190 million dollar lawsuit against Aetna. So certainly Aetna was trying to discredit us by using people like Saul Green. And they hired him to work on their behalf.
So there was an obvious conflict of interest for Green because he worked for Monaco who was assisting Aetna. Was this information published in the JAMA article?
No.
Green also questions the fact that you have a Ph.D.. At the American Association for Clinical Chemistry Symposium, July 1997, Atlanta, GA., he says in part
“Burzynski’s claim to a Ph.D. is questionable. Letters from the Ministry of Health,
Warsaw, Poland, and from faculty at the Medical Academy at Lublin, Poland, say,
respectively:
1. At the time Burzynski was in school, medical schools did not give a Ph.D.
2. Burzynski received the D.Msc. in 1968 after completing a one-year laboratory
project and passing an exam. (3) Burzynski did no independent research while in medical school.”
He cites the people below as giving him some of this information.
1. Nizanskowski, R. ,Personal communication. Jan 15, 1992.
3. Bielinski, S., Personal communication, Nov. 22, 1987
First of all, do you have a Ph.D.?
Well, the program in Poland is somewhat different than the US. What I have is equivalent to a US Ph.D. When a medical doctor in the US graduates from medical school, he receives a medical doctor diploma. In Poland it’s a similar diploma, but it’s called a physician diploma, which is equal to medical doctor. And after that, if you would like to obtain a Ph.D., you have to do independent research, both in the US and in Poland. So you have to work on an independent project, you have to write a doctorate thesis and, in addition, to that in Poland, you have to take exams in medicine, in philosophy and also you have to take exams in the subjects on which you have written your thesis, in my case this was biochemistry.
As you can see from the letter from the President of the medical school from which I graduated, this is a Ph.D..
Saul Green got information from the guys who were key communist figures in my medical school. The second secretary of the communist party in my school, hated my guts, because I didn’t want to be a communist. So, somehow, Green got hold of “reputable” communist sources (laugh) to give him that information. It is exactly the President of the medical school who certified that I have a Ph.D..
So you are saying that theses people he received his personal communication from, Nizanskowski R, and Bielinski S, are both Communists, is that correct, or they were?
Not only communists, but Bielinski was one of the key players in the communist party in my medical school. So certainly he was extremely active as a communist. And, you know that communists, they usually don’t tell the truth.
So there is absolutely no question about it, you have a Ph.D. and Green’s doubts are totally without foundation. Has he ever acknowledged publicly the fact that you have a Ph.D.?
He’s never got in touch with me regarding this.
There are some mainstream oncologists who have stated publicly that your treatment works such as Dr. Robert Burdick, oncologist and professor at the University of Washington Medical School.
He is one of the top experts in this field.
Dr. Burzynski, there are undoubtedly many people alive today solely because of your treatments, but there could be many hundreds or thousands more alive if the public was given free access to your treatment. Do you see this ever happening?
I see this happening within a few years. We already have 8 clinical trials that prove efficacy of the treatment. However, we still need to treat more patients, because in each of our clinical trials it is required that we treat 40 patients. If we are talking about 78 clinical trials, then the number of patients that need to be treated is about 3,000. We are moving forward, probably in another 2 to 3 years we will have final approval.
A group shot of some of Dr. Burzynski’s patients. Please see the Burzynski Patients web site for more information,
http:// http://www.burzynskipatientgroup.org
You may also e-mail Mary Jo Siegel, the lady who runs the web site. Mary is also a cancer survivor using Antineoplastons.
maryjo@siegel.net
You have fought the government on behalf of your patients’ rights for over 25 years. There must have been a few times when you considered calling it quits. What has sustained you over the years and kept you fighting?
Well you see, basically the principle. Certainly I could practice just regular medicine and not
spend millions of dollars for the research, which I did. And I could go to some other country and practice. But I feel that this is my obligation because what I am doing is right. I’m saving peoples lives. So why should I give in to some mediocre characters, to liars, to people who really misrepresent what I do. And if I fail, then America will fail also. Because really America is the bastion of Democracy in the world. If America is rotten, then the whole world will go down to hell. So if something is rotten in the Patent office, in the NCI and FDA, it is the duty of the citizen to show that this is rotten and should be corrected.
There are a number of good people who can make it work, so why should bad people erode and destroy the entire system. I felt that this was my obligation; I felt that I was right and even if I had to go to prison, I would fight for it, because this is the right thing to do. Otherwise I could not look at myself in the mirror. I would despise myself.
Do you think we will we ever have medical freedom of choice in the US, where we can choose whatever treatment we want for cancer?
I am not sure if this will ever happen. But at least I am hoping that the movement, which we pioneered, like this alternative medicine movement, will bring a lot of good to the American people. After all, now you have official recognition of alternative treatment, more or less, and this is because of our fight. If we wouldn’t fight at that time, then perhaps it would not happen, but maybe it would happen another ten years from now.
Standard medical practices and the observations of physicians who are outside the medical establishment are extremely important, because anybody can make a discovery and improve the health of people. This I think is an important movement, but whether the people of America will ever have a chance to select whatever treatment they want, is another story.
Finally Dr. Burzynski, a hearty thanks to you for keeping your treatment available to cancer patients, for keeping your oath as a doctor and putting the patient ahead of financial gain, and of course, for saving lives. Please keep up the great work. Thank you for giving me the time to conduct this interview and inform people about your work and treatment.
Thank you.
End of interview.
Gavin.
Please be aware. Orthodox medicine often states that people who have recovered from cancer by unapproved methods did so due to a “spontaneous remission”. This means that the cancer just disappears for no apparent reason. First of all, I do not know of any documented cases of spontaneous remissions in brain cancer. In other serious cancers it is so rare as to be unworthy of discussion.
But here is the most crucial point. A true spontaneous remission is when the cancer goes away without any treatment, either approved or unapproved. It’s absurd to suggest that someone who received large amounts of Antineoplastons, and is then cancer free, had a spontaneous remission. If someone has surgery to remove a tumor and they are cancer free for years, we know it was because of the surgery.
Also remember that in many cases cancer patients turn to Antineoplastons (and other so-called alternatives) after chemotherapy and/or radiation have failed. If the patient goes into remission, oncologists often state that it was a delayed response to their treatment. This is a very convenient situation for oncologists. When their treatments fail, they still claim the credit for the patient’s recovery, even after the patient has been on Antineoplastons (or other treatments) for months/years.
Read about Dr. Burzynski’s treatment from the most important sources, the patients who had cancer and who are alive today because of Antineoplastons. The Burzynski Patients Web Site
http:// http://www.burzynskipatientgroup.org
Kim also has an e-mail account she specifically set-up for people to contact her about her experiences with Dr. Burzynski, oncologists, Antineoplastons and cancer treatments in general. Any e-mail unrelated to these subjects will be deleted.
kimmoreno5@yahoo.com
While searching the Internet for links related to Koch’s glyoxylide, I found a recent article on Dr. Mercola’s web site related to a drug called Methylglyoxal (the lead ingredient, which is a metabolite in our body) that has been tested in India for over ten years. Please see, http://www.mercola.com/2001/jun/13/methylglyoxal.htm
Thank you for taking the time to inform people about your family’s experiences while your daughter Tori was taking Antineoplastons.
Tori was first diagnosed with a Stage 4 brain stem glioma in August 1998, is that correct?
Yes
What was the prognosis?
The doctor’s basically told us to take her home and prepare for her to die.
Were there any records of anyone surviving with this type of cancer, using orthodox treatments?
None that they could provide us with.
How many cancer centers did you visit?
We originally were at Miller’s Children at Long Beach Memorial and then went to City of Hope. We also sent her MRI’s to Dr. Fred Epstein in New York to be looked at.
And they all said the same thing, Tori’s brain cancer was fatal and nothing could be done? How long was she expected to live?
Yes, they all said there was nothing we could do. She was given 2-6 weeks to live.
How did you find out about Dr. Burzynski and Antineoplastons?
On the Internet on a brain tumor support group. We read a letter from a father whose daughter was on the treatment.
Did you ask your doctors about Burzynski? Had they heard of him or researched his treatment?
Yes, we asked all of them about it. Most frowned at the idea, the oncologist refused to see her if we took her to see Dr. Burzynski. The only one who told us that he thought Dr. B might have a good chance with helping us was Dr. Fred Epstein.
When did you first visit him?
In October 1998
Did he tell you he could cure Tori?
No. He said he thought Antineoplastons would help her, but he wasn’t sure he had enough time. He was very upfront and honest with the statistics he had with her type of cancer but offered no promises.
How much Antineoplastons was Tori taking?
I can’t even remember what dose she ended up on when she was taking it intravenously.
What were the side effects? In the photos you sent me, Tori is greatly enlarged, I assume due to fluid retention. Is that what it was? How was that alleviated? Were there any other side effects due to the Antineoplastons?
We always had to monitor her potassium and sodium. So, she had to drink a lot of water and therefore we went through a lot of diapers. Those were the worst of the side effects. In the picture, she was so large due to being on Decadron, which we were able to wean her off of in January 1999.
Were you surprised when Tori started responding?
Yes, I have to say I was. It is hard to believe something great is going to come out of something so painful. I guess she taught me not to lose faith in life.
How soon was it before Tori’s brain tumor started reducing in size?
Immediately. It had shrunk in size by 20% after the very first MRI, which I believe was in 6-8 weeks…it’s been a long time and a lot of MRI’s later.
For how long did Tori continue to take Antineoplastons intravenously? Did you administer this yourself at home?
She took them through IV for 2 years and yes; we did this all at home.
Does your insurance company pay for the treatment? Did they try to avoid paying for it?
No, they do not pay for the treatment.
I understand Tori is 5 today. Is she still taking Antineoplastons? Has the tumor completely gone?
Yes, she just turned five in June. She still takes Antineoplastons orally…. she takes 40 capsules a day. Her tumor has decreased in size by 86% and they believe what is left may be scar tissue.
Has Tori suffered any permanent side-side effects from Antineoplastons?
Not one. In fact, it decreased her symptoms dramatically and never caused her any harm.
So Tori is cancer free and side effect free today?
Absolutely….
This is an incredible story Kim. Your child was diagnosed with a fatal brain cancer and the best oncologists and surgeons in America told you it was hopeless. Yet you found a cure for your child, without the billions, and so-called cancer specialists, that the NCI has at its disposal. Have any oncologists or doctors asked you about Dr. Burzynski’s treatment?
They tend to ask very quietly, but never really respond to what I have to tell them. There is curiosity there, just no one is really willing to step up to the plate and believe that the antineoplastons had something to do with her survival.
What do they say now that Tori is alive and well?
The neurologists told us that sometimes it happens and they called it “spontaneous remission”. Again, I asked them to provide some statistics and there were none to be seen.
That is of course the height of absurdity. To my knowledge, there has never been a documented case of any brain cancer going into spontaneous remission. Have you ever mentioned that to them?
Yes, again with no intelligent response.
So they are quite content to administer the same cancer causing, toxic treatments, when they know about your daughter’s success with Antineoplastons?
Absolutely. It amazes me that some of them can sleep at night.
Has your opinion about the medical profession, specifically cancer specialists, changed since Tori’s recovery? If it has, in what manner?
Yes, it has changed a lot. I guess the biggest change would be that I no longer sit back and believe anything a doctor tells m e and that we have to take our healthcare into our hands by searching for legitimate options. I believe we have the right to choose.
What do you think about the fact that some 3,000 children in the US (untold thousands worldwide) this year will be diagnosed with some form of brain cancer, and their families will have to face the same horror you did, the horror of losing a child. But virtually all of them will not be told about Antineoplastons, the treatment that cured Tori?
It really makes me sick to my stomach. That is why I want to talk to anyone who wants to listen about Tori’s Story
Finally, I commend you and your husband for finding a way to cure your daughter, when all the “experts” said it was hopeless. You gave her life when she was born, and then you saved her life by finding Antineoplastons.
I thank you once again Kim for answering my questions and sending me the photos of Tori. Give my best to your family.
Gavin Phillips opinion
Dr. Burzynski is a great rarity these days. He is a courageous man who risked everything battling the FDA for over 15 years so as to allow cancer patients access to his treatment. A doctor who puts his patients well being before financial gains. But how many people diagnosed with cancer this year will ever find out about Antineoplastons? A tiny percentage, because very few mainstream oncologists will inform their patients about a treatment that has yet to be approved. And why is that? The NCI and ACS have supposedly been searching for decades for any and all treatments that are effective against cancer. For over 15 years Dr. Burzynski’s treatment has shown that it is effective. Many cancer patients, including some very young children with supposedly hopeless brain cancers, are alive today because of Antineoplastons.
Here we come to the most crucial questions of all. Why did the FDA try their utmost to ruin Dr. Burzynski by involving him in 4 court cases? Why did the NCI make certain Burzynski’s clinical trials failed by diluting his treatment and enrolling patients who were the least likely to respond to Antineoplastons? If this was a one-time only event, we could dismiss it as an aberration; on overzealous government agencies. But the persecution of Dr. Burzynski is not an aberration, but the norm. There have been many well-documented cases in the last 70 some years of doctors/healers who discovered an effective cancer treatment, only to find the full force of the cancer agencies trying to destroy them and their discoveries. I have learned about several during my research. Dr. William Koch/Glyoxylide, Dr. Andrew Ivy/Krebiozen, Harry Hoxsey method/herbs, Royal Rife/radio waves, Ernst Krebs/ Laetrile/Amygdalin, Gaston Naessens/714 X, Dr. Lawrence Burton/Immuno-Augmentative Therapy, Dr. Max Gerson method/diet.
What, if anything, does Dr. Burzynski’s Antineoplastons have in common with these other treatments? Most of them are natural; all of them are inexpensive to produce, especially when compared to the enormous costs of conventional treatments. If cheap cancer treatments with virtually no side effects were allowed to freely compete with the cancer causing offerings of the pharmaceutical companies, the outcome is obvious. The pharmaceutical companies, and the hospitals that administer their drugs, will lose tens of billions in profits. And this I believe is the reason Dr. Burzynski, and the people who have gone before him, have been publicly vilified as “quacks” and their treatments discredited. The fact is that the pharmaceutical companies control American medicine, and they are only interested in treatments from which they can derive a profit.
Every cancer patient in America, and the world, should have free access to Antineoplastons. It is intolerable, not to mention totally un-American, to give a profit obsessed industry a monopoly over Americans healthcare. Nobody should have the right to force toxic chemicals down our family’s throat, especially when Dr. Burzynski’s treatment has proven effective (for some cancers) and does not have appalling side effects.
One point, in which I disagree with Burzynski about, is the possibility of medical freedom of choice happening in America. It would happen in a year or two if enough Americans demanded it. You can help make that a reality. Please forward this interview to as many people as you know, as well as media outlets. Around ten thousand Americans die every week from cancer; we simply must have medical freedom of choice. Thank you for your time.
Sincerely,
Gavin Phillips. http://www.cancerinform.org
E-mail this sites address to someone and help spread the word
====================================== 1/2012 – Sonali Patil, Ph.D., Research Scientist at The Burzynski Clinic (18:22) 9/18/2012
======================================
So you, you, you’re a scientist here ?
I’m a scientist here
And, and you work, just with antineoplastons ?
Not necessarily
This is our cell biology lab, and in molecular biology we do basic research on the antineoplastons
Sometimes we also study it in combination with the other, uh, medicines that Dr. Burzynski is interested in
So, but mostly antineoplaston
This is looking at mechanism for action
Trying to understand how it treats the cancer cells, is able to kill the cancer cells without damaging the other cells of the body
So mostly antineoplaston is the target here
And what do you think about antineoplastons ?
We have found, uh, very interesting, uh, molecular pathways targets that antineoplaston is targeting, working very effectively to kill the cells, um, probably better than many other drugs, because, um, it has multiple targets, and so attacks the cells from many different angles, and is able to kill the cancer cells, more effectively
So, can I ask you, how did you come to work in, th, the Burzynski
the institution ?
Through an advertisement, it was
My position was advertised
I started 8 years ago, and
So ok
So it was advertised
Mhmm
So when you applied for the job, were you aware of the controversy of, (comments to self: learn to talk)
So when, when did you find out ?
Uh, eh, as soon as I joined (laughing)
Oh yeah ?
Few months later
I thought, it’s easy to find
It’s not hard
Of course
It’s not even, uh
Wha, what about any of you other colleagues, that prior to coming here ?
I mean, did they say anything to you, like, you know ?
Well they brought something up
(?) in, uh, uh, being there for him during this trial, my boss, my previous boss was here before me
Uh, so I have a very open picture of it, and it doesn’t bother me
He came up against it and won
Yeah
So that’s a good thing
An, and why do you think, it kinda hasn’t been, kinda lost the word, hasn’t taken off, you know ?
Has the scientific community hasn’t really embraced ?
Well anything that is non-traditional always, you know, takes its own time to get to people
Besides, the traditionalists don’t want it coming out because, uh, it affects, a lot of other things, um, finance, in, in the big Pharma
Right
that is affected by this
So, um, if it, if it were, um, a medicine already with another big company, it probably would already be out in the market by now, but, uh, it’s because it’s one man’s show
He’s fighting against, uh, traditional medicine, big, big centers like M.D. Anderson right here in Houston
So, most people want to believe, uh, what the other doctors, the oncologists, are telling them, because that’s what everybody does
So very few filter out of that and come looking for him, because they’ve lost hope there, and they’ve tried everything else, and they come because; which I wish they wouldn’t, come here as a last resort, you know
Mmm
and, by then, sometimes, uh, enough damage has been done that is sometimes even he cannot cure
It’s not magic
It’s
There’s a logic to the way the medicine works
The science behind it is not, it’s not just a magic bullet
So, and you have to target it at the right time
Catch cancer at the right time
So I have a, friend of my mother’s at home, whose spent, her whole, academic career, 20, 30 years, researching, astrocytomas
Mhmm
And, uh, you know, I did my research, and, I was no doubt that we were coming here
No question
My, my research was more based on people
Excuse me
On people
Talking to people who had been treated, and seeing the results, and then looking at the research afterwards, and she was just saying that “I’ve spent all my years, research, and research, and research, I can’t find anything, that validates, this, this treatment”
Now I’m not asking you to comment on what she said, but,
No, validation, validation basically means, uh, proof in scientific community
If you’re not accepted into the scientific community, you’re not going to be able to present that truth, and we go and present at conferences all the time, eh, when it comes to publishing papers, uh, we haven’t been very successful Dr. Burzynski has published, uh, a lot of data of his patients
So it’s out there
Yeah
If you, if you want to believe it, and you’re looking for it, you’ll find it
Yeah
It’s just, um, it’s not in the mainstream places, because it gets rejected out of there
Um, it’ll probably take some time to get into those spots where everybody else is publishing, and everybody else is talking about it, but it doesn’t mean that it’s not true
So obviously you’re here on a daily basis
So when was the 1st
Last 8years
So the last 8 years
When was the 1st time you actually saw, was it in the dish where you actually saw it ?
Well we see it, we’ve seen it for years before I came here
Yeah, but when was the 1st time you saw it, when you came here yourself and you saw ?
Well we see it every day
Um, we have cancer cells in the lab, that we treat, with the medicine
We see them dying
We see them undergoing a necrosis, which is the cancer deaths, pathway, that most people study and talk about
So
So, it’s happening, it’s happening in front of our eyes everyday
So, we have proof for it
you know (?)
We just have to get it out there, and there’s a, there’s a system to all that
Um
and were trying to, get it through the system, and get it out there
So what, when you 1st realized there is something here, did you not just feel like just shouting from the rooftops and telling everybody?
Well I wasn’t the one who discovered
He did, in the ’80’s
Yeah
and since then he’s been shouting from the rooftop
It’s just, nobody would listen to him
Yeah, yeah
So, you know, we’re just doing the, uh, actually it’s backwards
People usually do, uh, pre-clinical research 1st, because the medicine
Mhmm
goes out and to the patients, and we, we are kind of doing it, the other way around
He already has patient data
He’s been treating people
on this
People, survivors walking around, to tell the story, and now we are being made to understand how it works in the cells
So, it’s, it’s kinda doing, the research, after the trials
Just tell me
One more question
What’s it like
How would you describe Dr. Burzynski?
I admire his, uh, passion, for what he does
He truly believes in what he does, and to me that’s, that’s a big thing
If you don’t believe in yourself, then nobody else will, and, his memory
He, he has tremendous memory, and, uh, uh, quick thinking
He’s able to piece together stuff, uh, research articles, papers, put together puzzle, come up with a theory
He does that every day, every time I meet him it’s, it’s interesting to me to see how his brain works
you say, in, in the purest sense, he’s a scientist
I think he’s a doctor 1st, but a doctor who’s very, very interested in science, and that’s an important thing, because a lot of, uh, doctors don’t care about the research, and he does
I think, I think his primary aim is to treat patients, mostly
So if there were any type of skeptic, research scientist out there, what would you say to them about what goes on here?
We do, we do, everything that happens in any other lab, anywhere else
I went to school at Houston, ah, so, I know exactly how the labs work
We do exactly what they do
Yeah
Um, we try to write up our papers, and send them to the journals, just like everybody else does
Uh, present at conferences
We try to get our data out there
Um, we’re trying to do our best, just the way everyone else is
I, I suppise trying to do your best it, it, it’s fascinating because you actually have something
Yeah
that really, really does work
Mhmm
I mean, it’s a cure, right ?
We believe it is
It’s a cure for cancer
Not for all cancers
I actually asked Dr. Burzynski
Mhmm
I filmed him the other day and said to him, why do you, specialize in brain tumors ?
Mhmm
Do you know what his answer was ?
What was it ?
He said it’s because it’s the most difficult type of cancer
Well it is if, if you think about it
I don’t think there are many doctors who claim to have survivors, eh, at least in the numbers that he has, to present
Yeah
and, um, I hear that at conferences too when we, were standing around, they will look at the slides, eh, eh, which is a tumor, and they will say: “Well that’s not a tumor,” ye, “it’s just necrosis
It’s just a patch on the skin, and you just cured nothing, and”, uh, all the, “the patient was probably cured from, the therapy that he took elsewhere, you know, the radiation he got 10 years ago”
“That’s probably what cured him,” but, you know, th, those kind of patients will be rejected from other, hospitals, don’t survive, that far enough to, to tell a story
So what is it ?
Just people living in denial ?
Is it fear ?
Is it ?
Fear or denial
I’m going to do what everybody else does
Why, why should I go out and do something different, here ?
Yeah (?)
And, and lastly, you know the, the power the pharmaceutical companies have
Well of course
I mean, but I’m nobody to, comment about that
Yeah, yeah
You know
There’s, there’s a lot going on behind the scenes that we are not even aware of, but this is just what, um, my experience is, when I talk to other doctors at meetings and conferences, and they, you’re immediately dismissed as, oh, you know: “What you’re going to say doesn’t really make any sense because you work for, Dr.”
His name has been tarnished
——————————————————————
There’s a lot more, to that, than just, people playing politics, this, this, a whole lot of stuff going on behind there
So, I don’t think it’s, it’s (supression ?) as much, it’s just trying to tell your story, uh, so that somebody would listen and accept it, uh, maybe using, the right channels, going, presenting it in a different way, make it more convincing
All that, would help
So if it, if it was you, in his position, would you not have just given up ?
Or would you
Oh, definitely
We all talk about it all the time, that the amount of determination that he has, most people, would back off and leave, but like I said, he believes in what he does, and that’s what keeps him going
Yeah
As far as publishing is concerned, ’cause a lot of scientist want to see
We’ve tried
We, we, don’t get past the initial screening
We repeatedly send it back to other journals and that’s the process I keep doing all the time
Comes back, I send it back to another journal
Hopefully, one day it will get it
So, let, let, let, let me get this straight, ok ?
You write articles, right ?
Papers
Papers
Mhmm
and you submit them to, medical journals
Mhmm
and then what happens ?
They come back
Why do they come back ?
Sometimes, um, if they get to reviewers, uh, it’s not enough data, or, which I understand
We can work on changing, modifying papers, but, many times they come back, without any reason
They just get rejected, at the 1st, screen itself
So they come back without any reason
And why do you feel that is, in your own humble opinion ?
Wha ? (laughing) not humble opinion
It’s, it’s hard, um, publishing is a tricky game, you know ?
You have to publish once, to get your name in there, and then, they might publish you again, but, uh, with the negative publicity that we already had, and most of the community would look at the name and say: “Oh we, we just don’t want to, want to even read it”
So, it, it doesn’t even get past the 1st screen, because they don’t turn, flip the 1st page even
Ok, so, what you’re saying is that you see things that are published in these journals
Oh yes
And, you see ?
very similar stuff
We try to, we try to do research that is on par, uh, with what everybody else is doing, as far as the techniques, the ana, the data analysis
We, we try to do everything which is the standard for, uh, the research community, but, doesn’t get past
Um, how frustrating must that be for you ?
Mmm, it is (laughing), it is
So do you feel like you’re a party, or you’re trying to get into a party, and knocking on the door, and no one’s letting you in ?
I feel like that at the conferences too because, um, sometimes they come up to your, poster presentations, and, um, they’ll ridicule you right there, while you’re standing there by your presentation
Ok, just last thing, because one of the things I heard
Mhmm
recently, which were, that, uh, there’s some evidence that Dr. Burzynski has from, from the phase 2 clinical trials, showing people who have, uh, glioblastomas who’ve been alive for 10 years
Mhmm
and there’s something there that they want to try and get published
Mhmm
What you’re saying is, that might never get published ?
Well, Dr. Burzynski’s case is different
He has published some of his patient data
I’m talking about the research, uh, the pre-clinical research, the cell culture data, the molecular data
Um, we haven’t had success getting that out, but, he has, he also faces rejection a lot, but he doe, he has managed to get ta, a few publications in
So how does it work ?
If, if you submit something they can
What’s the process ?
They can submit it back ?
That’s not, there’s a review
There’s a whole review board
Um, you can select your reviewers
It goes through couple of cycles of review before it’s, agreed that they will publish it
So,
And in case they say no to publishing it
You can
do you, can you take it somewhere else ?
Yeah, you can take it somewhere else, but, um, but it’s, the peer-reviewed journals that are the ones that you want to get into, you can publish whatever you want, ah, that doesn’t count
That’s why when, somebody who’s of, uh, any significance in science would not even look at those articles if they’re not in a peer-review journal
So, they have to get into a decent place to make a mark
Do you think that will happen ?
What do you think has to happen in order for ?
It’ll happen, in, in time
They can’t keep refusing you
We, we try again and again
——————————————————————
But in time they just want to, not focus on it, and just have’m, bring in more numbers, and keep doing this, and in the meantime keep treating, some number of patients
On, on, top of everything, my personal belief is, uh, brain tumors are not, uh, a money-raising factor, because it’s a, it’s a minority cancer
If this were treating, uh, mainstream cancers as they’re called, as, uh, breast cancer, maybe they would look at it more seriously, but the numbers, with the brain tumors, which is a good thing
I mean it’s a deadly cancer
You don’t want more people to have it, but, that puts it in the category of, um, you know, not so feasible, as far as the money-making
And so, the priority; even though, it’s the most vicious, and it should be looked at more seriously, but, it’s not the one that brings the big bucks
So
So, put it aside
So why would the FDA, haven’t closed him down then ?
Because they, they, uh, believe the data that he’s sending them so far, and they don’t have a valid point to, just say no, it doesn’t work, and put it away
They see effect, and so they want, more numbers, more data
Is it, it the phase 2 trial is finished ?
Mhmm
but they’re still accepting people ?
Yeah
on more like a special ?
Special basis, and, um, sometimes compassionate grounds
(compassion exception)
Uh, exceptions
That’s normal ?
Yes
So
(Yes I guess it is a funding issue ?)
Right
(Like FDA, during the 2nd phase of clinical trials they found the data to be, real, real one, and they gave him the ok to go for 3rd phase of clinical trials, but just to go through this process you would probably need $100,000)
(?) and that’s stalling
(even more, millions dol, millions of dollars, to go through the 3rd phase of clinical trials, and)
(?)
(he’s a single doctor
It’s a 1st case)
Yeah
(probably in American history)
It is
(that single doctor is trying, to get a his job)
Self-funded
(approval
Self-funded
Whatever you’ve seen on that plant, everything came out of his practice
So he was the one who funded, literally the, the, research and development phase, but those installation, operation, all this big plant was built ?)
Yes, ’cause, uh,
(private)
one of the things I hear a lot, I’ve heard slot in the U.K. is that: “Why is he charging people for clinical trials ?
Well, uh, how else would you run this place ?
Exactly
How will you run this place, and how else will people be on the trial, because
Right
you know, there’s no pharmaceutical company involved here, right ?
There’s nothing
Nothing
It’s all out of his pocket
Every single bit
So
And what is stalling (?) is (?) again is, is funds
Money
Yeah, I also heard that the phase 3 they wanna do radiotherapy with, with it
Mmm
Hopefully, that will not be the case, but
we’re trying to
I think, uh, he is trying to fight against that, but, the FDA is the FDA, so
And what do you think about this case, he’s now got coming up in April ?
You know, he’s got this court case
Well there’s always something
Yeah (laughing)
He, he’s won before, so
Yeah
Do you think he needs the support, do you think he feels the support from, from all of you ?
I think so, for sure
(Oh, absolutely)
Yeah
Nobody forced us to work here
(Ah-hah)
Yeah
We get paid, but, you know
I could always look for another job if I needed to (laugh)
Yeah
So would you stay here because you really believe in what’s going on here ?
(?)
(Yes, that’s one thing that’s unique about our operation, and I’m talking about this location is, uh, whoever joined the company; and we have a guys who joined the company in the 80’s, 90’s
They stay with the company
Turnover is zero)
Yeah
(Joined the company
Stays with the company
It’s a challenge)
Yeah
(It’s a (?) challenge for us)
======================================
When I mentioned Ben and Laura Hymas to Bob Blaskiewicz during the Saturday Google+ Hangout, and suggested that I should compare it to the patient stories he “embellishes”, he suggested I review his patient stories instead
So what am I doing ?
I’m reviewing the patient story of Laura Hymas
However, my goal is to provide a perspective of her mood, health, treatment, and support network, so that readers can get an idea of what someone with cancer; who does not yet know that they have cancer, may be experiencing, so if they note similar experiences or symptoms in themselves or others, they will know that they most likely should seek professional medical assistance, and also be able to use it to compare to other “patient stories”
Laura Hymas: Kent, United Kingdom
Ben: fiancée
Jacob: son
—————————————————————— (I will be doing a little data clean-up)
Note how I do NOT “embellish” Laura’s story by adding extemporaneous commentary like Bob Blaskiewicz
—————————————————————— 2005 – Laura met Ben: knew instantly wanted to start family with him []
When first met Laura 3 years ago beautiful, bright and energetic girl [2]
loyal, kind hearted and has a smile so infectious that it can light up any room [2]
——————————————————————
started planning to marry and grow family [2]
======================================
====================================== MOOD
======================================
====================================== 1/2009 – Laura pregnant[]
a) delighted to be having a baby but pregnancy wasn’t easy []
b) suffered terrible morning sickness so severe had to be admitted to hospital []
—————————————————————— 4/2009 – morning sickness stopped at 16 weeks, from then on felt exhausted []
—————————————————————— 9/2009 – Jacob born[] [2] []
9/2009 – []
a) felt like happiest woman in the world
b) began planning to marry and grow family
c) adored being a mum []
d) knew wasn’t depression because felt so happy being a mum []
—————————————————————— 9/2009 – 12/2010 – []
a) felt never fully recovered after the birth and over 15 month period
b) certain wasn’t depressed
c) was so happy but exhausted all the time
d) convinced there was something wrong and so frustrating not knowing what
e) so tired even good nights sleep couldn’t get up in the morning to take care of Jacob when Ben went to work; stay in pajamas all day
f) at wits end
g) causing a lot of stress at home
—————————————————————— 5/27/2010 – []
a) felt like luckiest woman alive []
b)son Jacob just celebrated 1st birthday and she and fiance Ben were busy planning wedding[]
—————————————————————— 10/2010 – frustrating as kept wondering if was imagining it [[
—————————————————————— 12/24/2010 – []
a) no one expected anything serious so I just popped along with Jacob []
b) totally unprepared for what doctor said []
c) When doctors dropped their bombshell, just broke down []
d) happiness was shattered
e) thought of Jacob not having me here is heartbreaking []
f) will do anything to see him grow up and determined to beat this []
g) can’t accept going to die []
h) was in pieces []
i) immediately rang mum, Vanessa, who hurried to hospital to comfort her []
j) strange relief to know hadn’t imagined all symptoms, never expected something so terrible []
k) reassured when read stories saying people did live normal lives with this sort of tumour []
l) huge relief []
—————————————————————— 12/2010
a) felt couldn’t accept there were no other options []
b) felt confident []
c) so angry but had no choice []
—————————————————————— 2/2011 – []
a) Being unable to care for son made feel so depressed
b) felt like life was slipping away
c) No words can describe how much this news and period of time affected us as a family
—————————————————————— 4/2011 – []
a) had devastating effect on her as young mum, and affected every part of lives because at moment cannot enjoy time and plan future like any other normal young family []
b) everyone was in for further shock []
c) left reeling when doctors said tumour had grown rapidly []
d) couldn’t believe it []
—————————————————————— 5/27/2011 – confident will get there and beat this [9]
—————————————————————— 6/2011
a) felt very confident, almost empowered []
b) Given situation felt had nothing to lose []
c) astounded by generosity and kindness of general public []
—————————————————————— LAURAS TUMOUR [1]
—————————————————————— news hit very hard and also devastated her family and friends [1]
Until something like this happens, you dont realise how much of an effect it has [1]
fun loving girl who’s taken to motherhood like a duck to water, son is so lucky to have her because she always puts him first [1]
illness crept up slowly and was affecting long before diagnosis because it was eating away at health and energy which was so frustrating for when wanted to be energetic mum doing loads of things with Jacob [1]
awful diagnosis had positive and negative effect, fact now knows what was wrong is huge relief because knew deep down something was wrong, but its awful news at same time [1]
—————————————————————— 6/27/2011 – Anyone who has been or is going through a life threatening illness will understand power of positivity and support network of friends and family [15]
—————————————————————— faces race against time to travel to US for treatment she hopes will save her life []
—————————————————————— 7/8/2011 – [18]
helped stay positive and strong as a family even in difficult times [18]
worried how long it would take before could start treatment [18]
has been so strong and positive throughout journey, im so proud of her for being such an amazing fiancee and an amazing mum to Jacob – not a day goes by where she doesnt make us smile and keep our home life normal for Jacob at this important time in our little mans life…a really special person [18]
—————————————————————— 7/28/2011 – had agonising wait for results on Thursday
—————————————————————— 8/3/2011 – [21]
MIXTURE OF FEELINGS THIS MORNING [21]
never happy with just sitting around [21]
spent months researching all kinds of brain tumour treatment protocols looking for most successful, non harmful type of treatment currently available in the world and even speaking to past patients about their experiences, led us to front door of controversial Dr. Burzynski’s clinic in Houston this morning…somewhere that gives us all a bit of Hope [21]
Driving to clinic we were nervous about how today would be but as soon as we walked through the door we were met with friendly faces and felt instantly at ease [21]
left clinic feeling relaxed, like were in right place and the day had gone great, been prescribed treatment she wanted and with any luck will be having 1st dose this Friday [21]
—————————————————————— 8/8/2011 – [3]
a) tiredness
b) like having another baby!
c) it’s really worth it [3]
—————————————————————— 8/8/2011 – future was still very uncertain [55]
at times a whirlwind, extremely stressful [55]
—————————————————————— 10/2011 – [10]
a) times when feel like giving up [10]
b) only have to look at Ben and Jacob to know life’s worth fighting for [10]
c) determined to give treatment my best shot [10]
—————————————————————— 1/10/2012
bit of a difficult week this week, hadn’t been sleeping well due to MRI scan booked [40]
After such good result last time where tumour shrank so much were feeling so positive for few weeks after, as next scan gets closer start to worry about silly things, every time has bad day where feels exhausted, worry tumour suddenly started to grow again [40]
next day have really good day…. might have epileptic seizure, though has a LOT less of them now and aren’t as strong still worry means tumour growth [40]
get to few days before next scan even sillier things start to cross mind like “I’ve eaten lots of chocolate and had a few KFC’s since last scan was my diet really bad and hasthat made it grow!?!” [40]
all sorts of worries will go through mind at this point, like anyone else in this situation will understand [40]
trying to describe just other day what its like being told has malignant brain cancer [40]
(still hate those words) [40]
its impossible to describe but so awful makes you feel like you’re character in film “Saw” [40]
Like someone has put time bomb inside your head, it will grow fast and more it grows you will slowly become more disabled, doctors tell us that current available medicines can only slow it down..there are never any survivors 12-14 months (1 year – 1 year 2 months) from diagnosis is prognosis [40]
Eventually it will win, and you will lose the fight [40]
Sometimes in morning wake up and for few seconds forget have one, everything is normal, then reality hits again [40]
so anxious at this point, think they could tell [40]
WOW [40]
burst into tears [40]
so shocked, amazing start to 2012 [40]
—————————————————————— 1/13/2012
Every time has bad day where feels exhausted, worry tumour suddenly started to grow again [43]
fret before a scan [43] eat bad food [43] made stay up late some nights watching TV instead of resting [43]
all sorts of worries will go through mind at this point [43]
diagnosed with tumour just over year ago, describes what it’s like living with malignant brain tumour [43]
it’s so awful it makes you feel like a character in the film ‘Saw’ [43]
like someone has put time bomb inside head, it will grow fast and more it grows you will slowly become more disabled [43]
Eventually it will win and you will lose the fight [43]
feel fortunate given chance to at least try treatment [43]
About improvement, burst into tears [43]
so shocked, what an amazing start to 2012 [43]
—————————————————————— 2/8/2012 – [47]
big milestone of a day [47]
just wanted to wear something to cover the site where tumour is, area has biopsy scar and hair is much thinner from radiation [47]
—————————————————————— 2/21/2012 – had 6 weekly MRI scan tuesday – scary time as always [48]
—————————————————————— 3/25/2012 – taking small steps but feeling more like old self all the time [49]
—————————————————————— 4/5/2012 – “scan week” always stressful time [50]
—————————————————————— 5/19/2012 – diagnosed 17 months ago now and even on hardest days never given up hope [52]
—————————————————————— 6/22/2012 – [53]
Everything takes toll eventually [53]
feel fine now and have caught up on sleep, for 6 days while off treatment awaiting blood culture results was almost as if nothing was wrong, in perfect health so breath of fresh air to have no IV bag to carry around [53]
fleeting moment of “normality” for our family again [53]
—————————————————————— 7/4/2012 – [54]
been emotional rollercoaster, when look back over past year and a half [54]
has certainly been a life changing experience for us and all of our family [54]
extreme stress of situation is starting to wear off and starting to feel able to relax a little now and do “normal” things most families probably take for granted like planning ahead into future rather than living day to day [54]
don’t think its possible to describe personal experience like this, much like amazing feeling of becoming a parent you have to experience it first hand to really know what its like [54]
—————————————————————— 8/8/2012 – When look back feel like looking at someone else’s life [55]
—————————————————————— 8/29/2012 – [55]
its been well worth all the hard work and effort [55]
Mentally stayed so strong despite over past 12 months (1 year) having not slept full night due to infusions – calculated has had at least 2150 ninety minute infusions to date [55]
These days, life is much more hopeful and slightly less stressful [55]
—————————————————————— 11/27/2012 – [56]
fight this every day for almost 2 years without ever once faltering or giving up [56]
Jacob has been here to give a reason to be strong and his unconditional love has been a huge part of healing process [56]
couldn’t be happier [56]
—————————————————————— 1/2013 – Dr Burzynski has given me and my family the future back and I am eternally grateful [3]
appreciate every minute of every day [3]
I’ll finish treatment but have my life back [3]
Who knows what tomorrow holds ? [3]
======================================
====================================== HEALTH
======================================
======================================
6/2011 – [47]
whilst having radiotherapy lost all hair which fell out very quickly – in a matter of hours – too quickly to really have any time to get used to the idea [47]
(if thats possible) [47]
for woman it can be a really big part of their identity, especially if you’re just 25 years old [47]
——————————————————————
1/12/2012 – [40]
When has scan every 6 weeks to find out how treatment is going go through different emotional stages [40]
After such good result last time where tumour shrank so much were feeling so positive for few weeks after, as next scan gets closer start to worry about silly things, every time has bad day where feels exhausted [40]
next day have really good day…. might have epileptic seizure, though has a LOT less of them now and aren’t as strong still worry means tumour growth [40]
eat bad food, stay up late some nights watching TV instead of resting, dragged round country parks for walks [40]
(probably in hind sight exercise is very good right now) [40]
——————————————————————
1/13/2012
has good days and bad days [43]
Every time has bad day where feels exhausted, worry tumour suddenly started to grow again [43]
next day have really good day … then might have epileptic seizure, even though has a LOT less of them now [43]
4/5/2012 – feeling really good apart from sinus infection unrelated to tumour or medication [50]
—————————————————————— 6/15/2012 – suspected Hickman Line infection, really exhausted and had cold shivers [53]
——————————————————————
======================================
====================================== TREATMENT
======================================
====================================== 1/2009 – suffered terrible morning sickness so severe had to be admitted to hospital [10]
—————————————————————— 5/2009 – morning sickness stopped at 16 weeks [10]
—————————————————————— 9/2009 – Jacob born [2] + [10]
visited GP dozens of times [10]
At 1st doctor thought was baby blues but months after Jacob born, still felt tired, diagnosed postnatal depression [10]
came home with anti-depressants [10]
knew wasn’t depression because felt so happy being a mum [10]
didn’t even take the pills [10]
—————————————————————— 5/27/2010 – [10]
—————————————————————— 10/2010 – while family, from Rochester, Kent, were in Lanzarote, developed weakness in right arm [10]
At first thought might have slept awkwardly or pulled a muscle [10]
Some days it was there, some days it wasn’t [10]
Other times felt tingling in fingers [10]
—————————————————————— 11/2010 – [2]
started to lose feeling and co-ordination in right arm which prompted an MRI scan at hospital [2]
health slowly declined over past year, never fully recovered after having Jacob and mis-diagnosed with range of things including exhaustion [2]
breakthrough diagnosis came after another visit to GP’s [10]
had a cold couldn’t shake off and went to see if needed antibiotics [10]
saw different doctor and he could see from notes sometimes been at surgery every week [10]
kept list of symptoms on iPhone [10]
handed it to him and he looked concerned [10]
been visiting surgery with different symptom every time [10]
When he saw them together, warning bells rang [10]
Although he didn’t say he suspected a brain tumour, he sent for tests [10]
—————————————————————— 12/24/2010 – results arrived [2] + [10]
few days later called back for results [10]
had brain scan but also had blood tests and thought was going to get those results [10]
had found something on scan [10]
huge tumour [10]
doctors broke news has rare, inoperable brain tumour [10]
told there’s no cure and it’s growing [10]
bad news was tumour, known as an oligodendroglioma, was inoperable – deep in the brain and removing it would be too dangerous, so all doctors could do was monitor it [10]
diagnosed with rare Brain Cancer and biopsy revealed is most aggressive type of brain cancer, not only is it inoperable because of size and location but also deemed incurable using available cancer therapies in UK, which can only at best slow down growth [2]
Tests showed was low-grade, slow-growing tumour [10]
explained could have had it for 20 years [10]
reassured when read stories saying people did live normal lives with this sort of tumour [10]
average life expectancy poor, fewer than 1 in 100 people diagnosed live for 5 years, this cancer is common in people over 50 [2]
(approx 5,000 diagnosed annualy in UK) [2]
very rare in Laura’s age group, less than 50 cases reported every year in UK and no known cause [2]
told by doctors in UK that brain tumour was inoperable [43]
set out to find an alternative cure [43]
find clinic in Houston, Texas, run by Dr. Burzynski, that pioneers new treatment for malignant brain cancer Laura has [43]
clinic in America has pioneering treatment proven very effective against this type of cancer without harming the body [2]
clinic has been running for over 30 years and has been able to not only stabilise, but potentially cure this awful disease in some cases [2]
treatment not available via NHS [2]
most patients require anything from 2 to 4 years treatment [2]
diagnosed with type of brain cancer for which there is no cure in Britain and wasn’t expected to live more than 12 months (1 year) [37]
Since diagnosed has developed epilepsy and has multiple seizures a day [37]
right arm almost paralysed so has been unable to pick up Jacob or bathe him [37]
—————————————————————— 2/2011 – right arm virtually paralysed [10]
also developed epilepsy and having seizures every day [10]
—————————————————————— 4/2011
biopsy [50]
tumor turned agressive [53]
next batch of test results arrived [10]
results of scan and biopsy [10]
doctors said tumour had grown rapidly [10]
turned into worst form of brain cancer – fast-growing, high-grade glioblastoma multiforme [10]
while they could give chemo and radiotherapy to try to shrink it and prolong life, was nothing more they could do [10]
didn’t have time to lose [10]
No one knows how long has left to live – do know has most aggressive form of brain cancer [10]
If did nothing could be 6 months to a year [10]
after painstaking research found clinic in Houston, US, which offers treatment still under trial and NHS will not fund [10]
In States, critics believe it’s expensive, with no proven results [10]
read stories claiming it worked for some [10]
sent the clinic notes [10]
treatment based on clinic’s 25 years of research showing people with the cancer are lacking tumour suppressor [10]
In people without cancer substance kills growing cancers [10]
clinic doctor believes replacing it with drug will trigger body’s immune system to rid itself of tumour [10]
having therapy to help shrink tumour [10]
—————————————————————— 5/2011 – prescribed 6 weeks radiotherapy coupled with Temozolomide chemotherapy [10]
potential life saving treatment in America [2]
travel to US for treatment hopes will save her life [10]
—————————————————————— 6/2011
1) completed radiotherapy course
2) had to stop chemo after few days because allergic reaction
3) doctors very honest – couldn’t continue TMZ cycles because was allergic to it
4) original oncologist against decision to go to America for treatment because controversial and not yet approved by NICE, or any medical body
5) transferred to another oncologist willing to take me on in London
made fully aware early on that cancer treatment and long term prognosis has improved for most common types of cancers over the years [23]
has been no real improvement in outcomes for Brain Tumours – especially Glioma which although being one of most common cancers, especially in children, are most under funded types of cancer in research arena [23]
spoke to past patients in US and UK, some who were cured many years ago from ‘terminal’ brain cancers using “antineoplastons” at Burzynski Clinic in Houston, Texas [23]
clinic treats many types of cancer with other therapies but for antineoplastons primarily focus on brain cancer because it is one of hardest to treat [23]
Prior to visit to US sent sample of Laura’s brain tumour tissue from biopsy procedure to Pheonix, Arizona [23]
At lab number of tests carried out including gene expression tests, genetic tests used to identify which treatments would be most effective for Laura as an individual – backup plan if antineoplastons had no effect [23]
“FDA approved” Phase II clinical trial – specifically “Antineoplaston A10 & AS2-1” which are treatments pioneered by Dr Burzynski in mid 1970’s [23]
—————————————————————— 7/1/2011
friday finished 6 week radiotherapy course [18]
treatment supposed to be given alongside chemotherapy but 10 days into 33 day course of chemotherapy developed allergic reaction and had to stop particular drug [18]
chemotherapy isnt very effective for everyone with Brain cancer and missing out on this drug also means Laura is so much stronger physically than she would have been otherwise, that coupled with great advice from our nutritionalist Jo Gamble has meant Laura is in amazing shape and able to travel to America safely to start treatment [18]
—————————————————————— 7/2011 – travelled to Burzynski Clinic in Houston end of July to start Antineoplaston treatment and for Ben to be trained on administering medicine by doctors at Clinic
—————————————————————— 7/2011
since starting treatment in America in July, has begun to show signs of improvement [37]
started to get use of paralysed right arm and hand back [37]
has got a lot more energy and is able to go on short walks with Jacob [37]
receive gene therapy at clinic in Texas [37]
treatment involves having daily doses of drugs and scans every 6 weeks [37]
—————————————————————— 7/2011 – 8/2011 – 3 weeks there and came home and continuing treatment
(administered by Ben with very close direction from clinic)
—————————————————————— 7/25/2011 – MRI scan Monday
—————————————————————— 7/28/2011
had agonising wait for results on Thursday
got results “Increase in size of tumour left frontal lobe” and sent straight off to clinic, took few hours to get green light (because of time difference) and by 6:30pm got call we were waiting for from clinic FDA should give special exception without aproblem – Houston here we come [21]
—————————————————————— 7/29/2011 – [21]
Ben bought Friday.morning flights “just incase” [21]
arrived in Houston, Texas Friday.afternoon after trouble free flight [21]
—————————————————————— 7/29/2011 – 8/2011 – [21]
here for next 3 weeks [21]
Thanks to amazing fund raising and generosity from everyone raised enough money to start treatment now rather than 10/2011, this gives a huge head start [21]
would originally been having another cycle of chemo until 10/2011 but allergic to it so means NHS don’t have any more options available at this stage [21]
Chemo isn’t very effective for a lot of brain tumours so isn’t big loss, much better to get onto next step earlier than planned [21]
FDA law prevents clinic treating at this point unless tumour has grown since last scan [21]
(if it had shrunk from radiotherapy would’ve had to wait until end of August) [21]
in catch 22 situation, didn’t want tumour to have grown since April but also wanted to get America ASAP, UK doctors did say not to panic because even if there was growth it could just be post radiotherapy swelling, this put our minds slightly at rest [21]
decided to take additional option on top of standard treatment has come here for, option has only been available here a few months and – huge advancement in world of cancer treatment [21]
sample of tumour tissue sent over from Kings Hospital to Lab in Phoenix, Arizona [21]
Lab running number of different tests on tissue sample and also mapping DNA profile to get “molecular fingerprint” of individual tumour [21]
Everyone’s cancer is unique to them and therefore will respond best to “unique treatment plan” [21]
Lab results will be sent to clinic next week and will tell them exactly what drugs will be effective for unique cancer, and what specific genes are involved in causing cancer [21]
Gene target therapies will also be used to “switch off” genes causing cancer and “turn on” tumour suppressor genes to help stop cancer in its tracks [21]
rather than having “one size fits all” treatment be recommended treatments based on what clinic knows will be effective for individual case [21]
—————————————————————— 8/2/2011 – 1st appointment Tuesday where will finally meet Dr Burzynski in person [21]
—————————————————————— 8/2011
appointment booked at clinic in America for start of August so will be flying out at end of month to start treatment [18]
travel to clinic and began treatment [43]
—————————————————————— 8/3/2011 – [21]
11:30AM CONSULTATION AT CLINIC [21]
journey began 8 months ago (12/24/2010) when diagnosed, found out over following weeks how generally un-successful brain tumour treatment was in UK [21]
day consisted of consultation with Dr Acelar who will be primary consultant [21]
She interviewed in more detail about condition then went off and reviewed MRI scan images with Dr Burzynski as he would have final say over treatment plan to be prescribed [21]
After agonising wait for what seemed like 10 hours but was only 10 minutes Dr Acelar came back into room with Dr Burzynski [21]
this is a guy we’ve been researching about 6 months, has been completely curing what were previously considered to be 100% fatal brain tumours, and by curing I mean for a lot of patients tumours completely disappear [21]
wasted no time explaining exactly how treatment works, basically brain cancer is being caused by up to 600 defective genes, treatment will “switch off” cancer causing genes which will make cancer cells go into “apoptosis” [21]
Apoptosis is natural cycle where cell dies and is broken down by body, in other words tumour will start to break down and dissolve away [21]
know within 4-8 weeks if working and if not then they can add in other gene targeted therapies – based on results of some genetic testing having done at the moment [21]
had bloods and physical examination done [21]
(by another doctor) [21]
and done for the day [21]
due back at clinic once they get approval from FDA to treat – which will take 1-4 days [21]
—————————————————————— 8/4/2011 – [22]
just got call from clinic and now approved for treatment by FDA much quicker than thought [22]
didn’t think there would be any problems because fits criteria, having had previous Radiotherapy which is required before you can have any private treatment from Dr Burzynski [22]
waiting on appointment from doctor who’ll be fitting Hickman Line, which is IV line fitted in chest just below collar bone [22]
Having IV line fitted is more convenient that in arm long term, and allows delivery of higher doses of medicine from IV pump that will become friend for about next 12 months (year) [22]
should be getting fitted in morning (Friday), enabling 1st test dose of Antineoplastons in afternoon [22]
—————————————————————— 8/8/2011 – Burzynski Clinic Houston Texas [55]
11.am connected and switched on pump for 1st ever Antineoplaston infusion, from that moment on would have to have 90 minute infusion every 4 hours – EVERY DAY .24/7 [55]
grade four cancer diagnosis let alone NHS treatment options, alternative medical research and decisions, fundraising, flying to america for a month [55]
—————————————————————— 8/8/2011 – 9/2011 – doctors completely honest, said won’t know IF or how quickly will respond until on treatment for at least 8 weeks
—————————————————————— 8/8/2011 – on antineoplaston therapy since
medicine rich in sodium and have to infuse 2 litres daily
(dose lasts 90 minutes every 4 hours 24/7)
drink approx 5 litres of water daily
while pump running
carrying around infusion pump all day connected to Hickman line in chest
medicine pump
MRI scan at private hospital every 6 weeks
8/2011 – came home
—————————————————————— 08/12/2011
25-year-old Laura Hymas, of High Street, Rochester, has seen tumour shrink by more than a third in just 6 weeks after pioneering therapy in America [37]
already improving since treatment in USA [37]
—————————————————————— 9/2011 – came home and continued antineoplaston treatment, treatment literally takes over and consumes every day of your life [55]
Not specifically side effects because been lucky enough to have minimal short term side effects, but impact on daily life – the infusions, preparing medicine bags, blood tests, etc.. [55]
—————————————————————— 10/2011
hopes to have new treatment in US [4]
took until middle of October to slowly increase antineoplaston dose up to “maintenance dose” Dr Burzynski deems most effective for body weight
hard to see Laura suffer [4]
know in next few weeks going to lose hair [4]
Some people say should accept condition is terminal [4]
—————————————————————— 11/29/2011 -_6 weeks later scan tumour started shrinking by 36% [59]
—————————————————————— 11/2011 – 36% (Nov 2011) [48]
decreased in size EVERY 6 weekly scan [48]
bulk of tumour reduced in size by 77% since reaching maximum tolerated dose of Antineoplastons [52]
(growth stabilised before hitting this dose) [52]
—————————————————————— 1/2012 – 56% (Jan 2012) [48]
decreased in size EVERY 6 weekly scan [48]
—————————————————————— 1/10/2012 – [40]
scan every 6 weeks to find out how treatment is going [40]
such good result last time where tumour shrank so much [40]
there’s amazing doctor in Houston, Texas [40]
friendly, happy and kind man who is always polite and making jokes [40]
sees so many patients but makes real effort to know you as a person, who you are, where you come from, what your story is..how you got to his front door [40]
doesnt promise you anything, cannot help everyone [40]
(1st to admit that) [40]
costs are completely transparent from day one, you even get breakdown of why treatment costs what it does [40]
has many many patients who had inoperable malignant brain cancers that failed chemo and radiotherapy who are not only still alive 20 years later… are now cancer free [40]
Some patients have never had any other treatment for their brain cancer apart from Antineoplaston therapy [40]
(which is what on) [40]
family who live in Kent just 5 miles from us got in touch just before Christmas as they read about us in the local paper [40]
son had been diagnosed with brain tumour [40]
They knew radiotherapy and chemo would only be palliative and having these therapies alone at young age would shorten life let alone brain tumour problem [40]
searched and searched … Eventually like us found Dr Burzynski too [40]
sons tumour decreased in size 72.5% from 1 year just on antineoplaston treatment, then put on low dose of medicine for further 3 years [40]
tumour is still there but hasn’t grown or changed since [40]
NHS oncologist can’t understand how he’a still here [40]
was 8 years old when diagnosed, in 1998 [40]
now 21 [40]
happy healthy young man and just passed university degree, looking forward to future [40]
a lot of criticism about Dr Burzynski, people saying Antineoplastons “unproven” and Dr Burzynski is scam artist taking money from dying cancer patients, that terminally ill cancer patients should be discouraged from “False Hope” he gives people [40]
any celebrities that try to help fund raise or appeal for people to donate are bombarded on twitter and internet with messages saying they are helping someone see scam artist and quack [40]
We have been focus of some of these groups, they have been trying to discourage people from donating to us “With Laura’s best interests at heart” [40]
already tried and exhausted currently available “conventional” medicine [40]
countless websites discussing Laura, other current patients with fund raising campagins and Dr Burzynski that contain false information about us all [40]
isn’t new thing to Dr Burzynski, he’s used to it by now but for us it’s distressing [40]
They try to find holes in Laura’s scan results when she reports good news, one person even told Laura on twitter to “F*** off” then he called her a “Burzynski Troll” and justified actions by saying Laura fake patient designed to encourage more people to give money to “Burzynski scam” [40]
REAL Stories about REAL people like the one above from family who live near us are ones that give us strength to carry on [40]
one day critics might decide there’s enough evidence to show treatment works? [40]
Just because they haven’t seen scientific data doesn’t mean something doesn’t work [40]
It’s worked for many [40]
having great response [40]
Tuesday when had scan at private hospital were walking past office afterwards where radiologist would be examining new scan and comparing it to last one taken 11/29/2011 [40]
stood outside to catch attention of secretary so could arrange next scan, at that point I saw through crack in door someone had brain scans on computer screen [40]
radiologist rolled back in his chair and popped his head round the door, our hearts were pumping as we were told we could have the result straight away [40]
radiologist had huge smile on his face [40]
Its looking good, definitely smaller [40]
walked in office, and had new scans from that day on screen with Laura’s scans from 11/29/2011 below [40]
To naked eye obvious to see tumour MUCH smaller and enhancing much less [40]
(less cancerous) [40]
pointed out some things and said haven’t finished measuring but estimate AT LEAST 25% SMALLER than last scan 6 weeks ago 11/2011 [40]
said if hang around in hospital cafe for 15 minutes he’ll finish up report and can have copy [40]
had some lunch and nurse came in short while later with report [40]
better than even initially thought [40]
TUMOUR DECREASED 56% in size since beginning American treatment 8/2011 [40]
most recent scan revealed tumour decreased massive 56% in size since beginning of treatment [43]
scan – 56% tumour decrease! [59]
latest scan shows tumour at least 25% smaller than last scan 11/2011 [43]
decreased 56% in size since beginning American treatment 8/2011 [43]
sent scan CD off straight away by Fedex to America so doctors could do independent report too [40]
—————————————————————— 1/11/2012 – [40]
Yesterday night spoke to doctor at Burzynski Clinic, they’ve reviewed scans and concluded in their opinion tumour has decreased same amount [40]
need to keep on medicine into 2013 [40]
If one day lucky enough for cancer to completely disappear still need to keep on medicine up to 12 months (1 year) after, “maintenance program” designed to make sure kill every single cancerous cell because Glioblastoma Multiforme are very nasty and has “roots” that even an MRI wouldn’t necessarily pick up [40]
If stopped treatment too quickly cancer could return [40]
—————————————————————— 1/13/2012 – [43]
Dr. Burzynski and clinic have been under constant heavy criticism from people believing he’s a ‘quack’ that gives ‘false hope’ to terminally ill people [43]
a lot of criticism out there about Dr Burzynski, people saying Antineoplastons “unproven” and Dr Burzynski a scam artist taking money from dying cancer patients and terminally ill cancer patients should be discouraged from “False Hope” he gives people [43]
already tried and exhausted currently available “conventional” medicine.” [43]
diagnosed with tumour just over year ago [43]
Doctors tell us current available medicines can only slow it down – there are never any survivors 12 – 14 months (1 year – 1 year 2 months) from diagnosis is prognosis [43]
keep on medicine into 2013 [43]
—————————————————————— 2/2/2012 – [44]
treatment is working so well [44]
every 6 weeks for MRI scan [44]
—————————————————————— 2/9/2012 – [47]
really huge milestone [47]
Day to day been continuing with medicine [47]
attached to IV pump using hickman line in chest and has dose every 4 hours 24/7 [47]
Each dose lasts 90 minutes so really interrupts sleep patterns and makes tired – effectively infuses 2 litres of medicine directly into blood stream every day involves a lot of trips to toilet [47]
medicine high in sodium so on top of this drinks 5 litres of water a day [47]
aren’t any side effects other than toilet trips, extreme thirst while infusing and tiredness [47]
Next MRI scan in few weeks so nerves and worries setting in [47]
—————————————————————— 2/21/2012 – had 6 weekly MRI scan tuesday [48]
77% (Feb 2012) 77% in just 18 WEEKS [48]
decreased in size EVERY 6 weekly scan [48]
scan was even better news – 77% tumour decrease! [59]
just got results and tumour has continued shrinking [48]
now 77% smaller than when started treatment 8/2011 [48]
amazing news, was stable few months while increasing Antineoplaston dose, then hit maintenance dose 10/17/2011 [48]
decreased in size EVERY 6 weekly scan [48]
Glioblastoma Mutliforme is most agressive cancer out there so Laura will need to keep going on treatment for at least another year to kill every single cancer cell [48]
been fighting this cancer for over year now, almost approaching April [49]
This time last year told awful news that brain tumour had changed and was now much more aggressive, had turned very cancerous and future was very uncertain because it was one of worse cancers anyone could get, on top of that it was in worst location too [49]
—————————————————————— 4/5/2012 – [50]
6 weekly MRI scan went well again [50]
tumour now reduced to what doctors believe is small cavity there because biopsy 4/2011 [50]
small edge of cavity is still enhancing on scan [50]
(which means cancerous cells) [50]
enhancing less than last scan, so everything moving in right direction [50]
plan for now is to just keep going and continue daily doses of antineoplaston medication [50]
treatment working so well [50]
—————————————————————— 5/15/2012 – scan Tuesday shows what remains of tumour is now at stage where hardly enhancing at all on MRI scan, enhancement now barely visible without magnifying scan images heavily [52]
“active” (growing/spreading) malignant tumour shows up on MRI scan as bright white area [52]
bright area represents cancerous cells and tumour used to light up like light bulb which was bad news [52]
aim of any successful treatment is to get rid of everything that enhances so no longer have active tumour [52]
bulk of tumour reduced in size by 77% since reaching maximum tolerated dose of Antineoplastons (11/2011) [52]
(growth stabilised before hitting this dose) [52]
reduction in tumour size meant able to stop taking steroids [52]
(designed to reduce brain swelling but have nasty side effects) [52]
epilepsy has got much better, especially in last month [52]
seizures much less frequent [52]
What’s left of tumour – is cystic fluid filled cavity* [52]
*cavity there from surgery (Biopsy) 4/2011 [52]
cavity may never dissapear, might just stay there because brain tissue has been removed [52]
Alternatively cavity may break down very slowly and hopefully dissapear over time [52]
Either way isn’t major problem [52]
—————————————————————— 5/18/2012 – [52]
had chat with doctor over phone last night, as last scan showed very very little enhancement they have now decided to put on “finishing program” of antineoplastons [52]
If patient lucky enough to have tumour stop enhancing then they’re asked to carry on treatment for 8 months, then finish [52]
8 month schedule allows medicine to have time to kill last cancerous cells that aren’t showing up on MRI scan [52]
told once people finish schedule – in most cases – unlikely tumour will return, most people can go on to live normal tumour free life [52]
diganosed 17 months ago (1 year 5 months) [52]
“In the field of Brain Tumours there are no ‘proven’ treatments, only treatments ‘accepted’ by a group of clinicians who practise in that field” [52]
treatment isn’t guaranteed to work for everyone, but there are many long term (10, 20yr) survivors [52]
Using traditional chemo and radiation on inoperable GBM has no long term survivors [52]
—————————————————————— 6/15/2012 – [53]
suspected Hickman Line infection, really exhausted and had cold shivers [53]
Burzynski Clinic very on the ball and didn’t want to take any chances, said had to take off antineoplaston treatment and go straight to hospital so doctor could take blood cultures from hickman line and arm, local doctor arranged for us at very short notice [53]
told by clinic that if infection in line it would have to be taken out and would have to have probably 7-10 day course of antibiotics…then there would be headache of how to get another hickman line surgically fitted because only GP supporting in england [53]
havent seen or had any contact with NHS oncologist since ealier this year, despite good progress so they probably wouldn’t be able or willing to help in this situation [53]
Worst case looking at about 3 weeks without treatment – huge worry because hasn’t missed single day of treatment since 8/2011 [53]
—————————————————————— 6/21/2012 – blood cultures were taken and results were clear, no infection present [53]
started back on antineoplaston treatment again and could forget all problems and what if’s [53]
While off treatment had good chance to rest and relax, something long overdue [53]
hadn’t had full nights sleep for nearly 11 months [53]
medicine is very high in sodium so wake up during doses about 5 times a night for toilet trips and drinks [53]
totally burnt out last week so suspect cold shivers and exhaustion were just where needed a break and also past year catching up emotionally [53]
been rollercoaster, on autopilot so don’t think taken 5 minutes to stop and think about whats happened to family, extreme stress of situation, fundraising and worries about raising enough money, trip to america, treatment and all the controversy it attracts [53]
—————————————————————— 7/4/2012 – [54]
had MRI scan last week and despite being off treatment for 6 days prior to scan [54]
(due to suspected IV line infection) [54]
NO CHANGES [54]
back on antineoplaston treatment again and still scheduled to finish treatment at end of year [54]
really lucky to catch tumour early [54]
last year only initially had 3 options which were surgery, radiation and chemo [54]
did enormous amount of research and even got MP involved with discussions with head of PCT, they confirmed all standard approaches were palliative, designed to buy time – not something we were told by oncologists, who refer to these 3 modalities as “a radical treatment approach” and give little information apart from “we’ll see what happens” [54]
they are same options that’ve been used for decades – where is the progress? [54]
Being an inoperable tumour our only options left were radiation and chemo [54]
Knowing that best radiation can do is slow down growth [54]
(in some cases) [54]
If it worked that would only be small window of time [54]
was unable to take more than few days of chemo due to allergic reaction [54]
(which in fact, looking back was actually a normal body reaction to taking a highly toxic substance) [54]
Would American treatment work or would Dr Burzynski be a crook just like all the sceptics were saying? [54]
—————————————————————— 8/2012 – no trace of Tumor at all [59]
always get 2nd opinion from UK radiologist who confirms just cavity left which should resolve over time [59]
last update just after MRI scan, at which time both Dr Burzynski’s radiologist and private UK radiologist both confirmed there was no trace of residual or recurrent brain tumour on MRI scans [56]
—————————————————————— 8/29/2012 – [55]
Scan: one year on treatment! on Wednesday [55]
Burzynski Clinic advised all they can see on MRI scans is scar tissue, cavity present from where tumour used to be [55]
UK radiologist was more cautious initially [55]
(probably because he has never seen a Glioblastoma dissapear before!?) [55]
he reported on scan and came to same conclusion as Burzynski Clinic [55]
reported today he beleives all he can see is small cavity/scar tissue too [55]
fact that 2 parties don’t have any contact gives us great confidence in the 2 mirroring reports [55]
—————————————————————— 9/2012 – had scan [56]
—————————————————————— 11/1/2012 – Laura Hymas’s MRI assessment from Dr. Burzynski 11-01-2012
So this is uh a girl who came to see you uh this year, last year
Yes
I think this is after approximately uh 4 months of treatment
4, maybe 5 months
So she’s, been on treatment 4 months, and this is when she came to see you here
This was in Ju
I’m sorry, this was in July so this must be 6 months
6 months (both)
Yeah 6 months, yes
So this was July, and this was the next one that she had
That’s right
This is November, and uh, here is now, January
That’s a substantial difference, certainly
And this is with no chemotherapy
No chemotherapy
Just the uh
Just antineoplastons only
Yes
And, and what type of tumor did she have
Only, oh one, this is glioblastoma
This is the highest malignancy tumor
Yes
So you must be pretty happy with this
Well, she did very well
I’m very glad
Yeah
Sure
So maybe next one
Especially, since it was not necessary to use any other treatment
And actually, the response was somewhat slow and we thought that perhaps it would be necessary to add additional treatment, but since she got such a nice decrease we hope we can avoid any further treatment
Yeah
But this looks great because in addition to decrease in the tumor, we see also shrinkage of uh the cavity after, the operation
You mean the cavity around
That’s right
That’s right
The cavity here
Okay
So, this also, this is also the case which means that there is certain degree of repair, from the damage that was done by the procedure
Yes
That’s correct
She had a biopsy, didn’t she
That’s right
That’s tight
Yes
Yeah
So lets hope that perhaps another 2 months or 4 months it will disappear completely
—————————————————————— 11/27/2012 – scan this morning, confirm again nothing present, which is amazing news we all couldnt be happier [56]
—————————————————————— 12/25/2012 – scheduled to finish treatment just after Christmas [52]
—————————————————————— 1/2013 – It’s GONE
continuing antineoplaston treatment until end of treatment course in 1/2013 and will then have regular MRI scans to ensure tumour doesn’t re-occur
just taking time to relax and see out end of Antineoplaston treatment, which all being well will finish 1/2013 after next scheduled MRI scan [56]
finish treatment [59]
======================================
====================================== THOSE WHO MADE IT POSSIBLE:
======================================
======================================
5/12/2011 – Fundraising Launch! Thursday
such an amazing response and so many emails
Thank you so much to everyone, friends, family, friends of friends and even the people who have donated and dont even know us, we are really touched by your kindness
——————————————————————
7/8/2011 – family and freinds – parents, especially Laura’s mum and dad [18]
======================================
====================================== THE PEOPLE:
======================================
======================================
Alice – heard about us because her brother plays football with Laura’s nephew Joe [49]
——————————————————————
6/26/2011 – Bergin, James – London Bikeathon East London Thames Barrier through city 26 miles to South West London (Richmond Park) back to Thames Barrier 52 miles in 7 hours!
——————————————————————
Catlin (Alice friend Catlin) [49]
——————————————————————
8/3/2011 – Dan – Anglo-Texan friends [21]
——————————————————————
Danielle (Their friends) – run Cricketers Pub in Gillingham had disco for Laura last Friday; raising £425
——————————————————————
Elaine (Laura’s sister) [49]
——————————————————————
Figg, Keri – live locally and heard about Laura recently through a friend: Since then have been relentlessly selling wristbands, arranging fundraisers, and running all over Kent trying to get raffle prizes!
——————————————————————
Hills, Kirsten – Journalist from BBC
18:00! re-run at 22:30 [7]
——————————————————————
5/19/2011 – Hound, Rufus sent Twitter video to his 236,293 followers Thursday [8]
7/8/2011 – received almost £20,000 in 12 hours then more donations over following weeks as people continued to spread the word about the video [18]
7/8/2011 – Broken the £50,000 Barrier! – Update on Laura Friday: only started fund raising around 6 weeks ago! [18]
——————————————————————
6/26/2011 – Ben and 2 friends – London Bikeathon East London Thames Barrier through city 26 miles to South West London (Richmond Park) back to Thames Barrier 52 miles in 7 hours!
——————————————————————
5/31/2011 – Hymas, Eve (Evie) (Bens sister) – 12hr golf marathon Tuesday 7am [11]
5/31/2011 – friends at their schools who have donated to the fund [11]
5/31/2011 – Hymas, Theo (Brother) – [11]
——————————————————————
7/8/2011 – Les (Laura’s father in law) and his good friend [17]
——————————————————————
5/31/2011 – Jackson, Jemma – 12hr golf marathon Tuesday 7am [11]
——————————————————————
7/8/2011 – Jeffries, Terry …Local artist who gave a print of a beautiful painting of Venice, DeBeers diamond company donated a gold and diamond pen along with a box of 5 tickets to the Proms at the Royal Albert Hall! [17]
——————————————————————
Joe (Laura’s nephew) up north [49]
——————————————————————
Jones, Sandra – live locally and heard about Laura recently through a friend: Since then have been relentlessly selling wristbands, arranging fundraisers, and running all over Kent trying to get raffle prizes!
——————————————————————
7/10/2011 – Local Man Donates £5,000 ! Sunday [19]
Lee – local man donated £5,000 after reading her story on leaflet in shop near Jacobs nursery [19]
Ben and Laura’s dad Fred arranged to meet Lee in a coffee shop in Rochester yesterday [19]
——————————————————————
4/19/2012 – Les (Laura’s friend) [51]
——————————————————————
8/3/2011 – Louise – Anglo-Texan friends [21]
——————————————————————
6/26/2011 – Marks, Richard – London Bikeathon East London Thames Barrier through city 26 miles to South West London (Richmond Park) back to Thames Barrier 52 miles in 7 hours!
——————————————————————
7/8/2011 – Meaking, Len (Les’ good friend) [17]
7/8/2011 – Auction and raffle [17]
——————————————————————
6/17/2011 – Morden, Emily – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday [12]
——————————————————————
McKenzie, Leon (ex Crystal Palace) [7]
——————————————————————
time to meet Russ – English guy who lives in Texas who heard about us on twitter – he’s offered to let us have a car for free while we’re here saving about £1000 [21]
——————————————————————
Snowdon, Lisa [7]
——————————————————————
Stanley Family [7]
auction off their dad’s signed Manchester City football shirt
——————————————————————
STANLEY, KAYLIE (Kayley) [7]
one of Laura’s oldest school friends, sadly lost her father to Brain Cancer when they were growing up [7]
sell her wedding dress and donate proceeds to the fund
——————————————————————
Steve (Their friends) – run Cricketers Pub in Gillingham had disco for Laura last Friday; raising £425
——————————————————————
6/17/2011 – Stevenson, Robyn – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday [12]
——————————————————————
6/17/2011 – Stevenson, Sam – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday [12]
——————————————————————
6/27/2011 – Taylor, Jessica L E – founder of “Share a Star” charity, Kent [15] http://www.shareastar.org.uk
——————————————————————
6/19/2011 – Willis, Brett – on Sunday completed 60 mile London to Brighton bike ride aim to complete ride in under 5 hours and managed it in 4hrs 51 minutes! [13]
6/19/2011 – raising £619 [13]
6/19/2011 – everyone who sponsored Brett and played a part in helping us raise money for the treatment fund [13]
——————————————————————
5/31/2011 – generously hosted by Roy, Sarah and Woodage, Charlie [11]
5/31/2011 – Woodage, Charlie – 12hr golf marathon Tuesday 7am [11]
——————————————————————
08/12/2011 – funded by £75,000 raised by family, friends and strangers [37]
10/2011 – if does save her life, we can carry on raising money for others in a similar situation [4]
======================================
====================================== BUSINESSES:
======================================
======================================
4/19/2012 – Night Out event Friday that Laura’s friend Les has been busy arranging [51]
——————————————————————
4/27/2012 – Fundraising event is Sponsored Assult Course for kids Friday [49]
All children will be involved and Lofty The Lion, Bolton Wanderers mascot
children are being educated about Laura and her condition, as school feel is very important that children realise these events can occur in people’s lives
Elaine said there will be Barbeque, ice creams etc [49]
——————————————————————
6/27/2011 – London 52 Mile Bikeathon Completed! Monday
——————————————————————
5/31/2011 – public par 65 Bramford Golf Center [11]
5/31/2011 – Tuesday at 7am, 12hr golf marathon (golfathon)
5/31/2011 – 124 holes and almost £500 in sponsorship [11]
——————————————————————
6/12/2011 – Golf Marathon! Sunday
——————————————————————
6/17/2011 – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday girls are friends of Laura and all wore grey to represent their support of “Wear Grey For Laura Day” as grey represents the colour for Brain Cancer support [12]
6/17/2011 – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday They all baked and brought cakes in and sold them to customers in exchange for a small donation [12]
6/17/2011 – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday The branch was dressed up in silver balloons and banners to help raise awareness and set the scene! [12]
6/17/2011 – Barclays staff members: branch in Rayleigh, Essex fund raising day for Laura on Friday raising £573.08 !! [12]
——————————————————————
6/20/2011 – Barclays Branch Fund Raiser Monday [12]
——————————————————————
Cricketers Pub in Gillingham had disco for Laura last Friday; raising £425 – Steve and Danielle (their friends) run
——————————————————————
08/12/2011 – enjoyed family trip to Dickensian Christmas Festival in Rochester at the weekend [37]
——————————————————————
7/8/2011 – Golf Tournament Raises £4,040! Friday
Len had charity BBQ at his house last weekend and raised £500 bringing total raised to £4,040 ! [17]
7/8/2011 – arranged golf tournament wednesday Hintlesham Hallf Golf Club in Suffolk, followed by hog roast, raffle some generous auction items, some nice cake [17]
——————————————————————
7/8/2011 – anonymous golfer donated holiday to La Manga with flights, accomodation and 2 rounds of golf included! [17]
——————————————————————
7/4/2011 – Prima Montessori Family Fun Day! Monday [16]
7/3/2011 – Jacobs nursery held fun day on sunday to help raise money for Laura’s fund! [16]
7/3/2011 – nursery staff got together and produced amazing day BBQ, cakes, Tombola, Raffle prizes, Painting and messy play, a Magician/entertainer for the kids, bouncy castle and loads more …including throwing wet sponges
(and later full water buckets!)
at the staff for a few quid!
Mums and Dads even benefited – they got their car washed
(for a small fee) [16]
The family run nursery have been a great support to us and are arranging more events over the next month, we cant thank them enough for their support and the amazing job they’re doing looking after Jacob – he loves his days at the nursery! [16]
6/26/2011 – raise amazing £7,650 in total sponsorship for this event from colleagues at RWE Trading where Ben and James work and RBS where Richard works!
——————————————————————
6/27/2011 – “Share a Star” Supports Monday [15] http://www.shareastar.org.uk
——————————————————————
4/5/2012 – relaxing spa break courtesy of The Willow Foundation [50] http://www.willowfoundation.org.uk
======================================
====================================== NEWS MEDIA:
======================================
======================================
3/25/2012 – in local paper last week article celebrating recent scan showed 77% tumour reduction [49]
——————————————————————
5/15/2011 – BBC SOUTH EAST NEWS [7]
——————————————————————
2011 – BELLA magazine
——————————————————————
5/27/2011 – Daily Mirror Covers My Story Friday [9]
IPC magazines journalist [7]
——————————————————————
‘Pick Me Up’ magazine – has circulation of 400,000 copies sold every week [7]
£500 to Lauras Hope fund for her story! [7]
——————————————————————
5/27/2011 – NewsUK News,Real life: I’ll do anything I can to stay alive for my baby 12:01 AM By Mirror.co.uk [10]
——————————————————————
Sky channel 983 – family and friends not in Kent/Sussex & Surrey area [7]
======================================
====================================== REFERENCES:
======================================
====================================== [1] – 12/24/2009 – Laura’s Tumour
—————————————————————— http://www.hopeforlaurafund.co.uk/lauras-tumour
====================================== [2] – 5/8/2011 – Our Original Appeal – 8th May 2011: Welcome to the Hope for Laura Fund
—————————————————————— http://www.hopeforlaurafund.co.uk
====================================== [3] – Hope for Laura Fund blog
—————————————————————— http://www.hopeforlaurafund.co.uk/blog
====================================== [4]
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/frontpage/4
====================================== [5] – 5/12/2011 – Fundraising Launch! on Thursday, 12 May 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/our-second-blog-post
====================================== [6]
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/frontpage/3
====================================== [7] – 5/14/2011 – Press Coverage! on Saturday, 14 May 2011. BBC SOUTH EAST NEWS & PICK ME UP MAGAZINE
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/press-coverage
====================================== [8] – 5/19/2011 – Twitter Has Gone Mad!! on Thursday, 19 May 2011. RUFUS HOUND GOES THE EXTRA MILE FOR LAURA
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/twitter-has-gone-mad
====================================== [9] – 5/27/2011 – Daily Mirror Covers My Story on Friday, 27 May 2011. COVERAGE AVAILABLE ONLINE AND IN TODAYS HARDCOPY PAPER
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/daily-mirror
====================================== [10] – 5/27/2011 – NewsUK News, Real life: I’ll do anything I can to stay alive for my baby 27 May 2011 12:01 AM By
Mirror.co.uk
—————————————————————— http://www.mirror.co.uk/news/uk-news/real-life-ill-do-anything-i-can-130745
====================================== [11] – 5/31/2011 (6/12/2011) – Golf Marathon! on Sunday, 12 June 2011. On Tuesday 31st May at 7am, Charlie Woodage, Jemma Jackson and Bens sister Eve Hymas teed off for a 12hr golf marathon in aid of the ‘hope for laura fund’
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/golf-marathon
====================================== [12] – 6/20/2011 – Barclays Branch Fund Raiser on Monday, 20 June 2011. Barclays staff members Emily Morden, Robyn Stevenson & Sam Stevenson arranged for the branch in Rayleigh, Essex to have a fund raising day for Laura on Friday 17th June
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/barclays-branch-fund-raiser
====================================== [13] – 6/20/2011 – London to Brighton Ride on Monday, 20 June 2011. A huge thank you from us to Brett Willis who on Sunday completed the 60 mile London to Brighton bike ride in aid of Laura
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/london-to-brighton-ride
====================================== [14] – 6/27/2011 – London 52 Mile Bikeathon Completed! on Monday, 27 June 2011. Laura’s fiancee Ben and two friends (James Bergin and Richard Marks) completed the London Bikeathon yesterday to raise money for Laura’s fund!
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/london-52-mile-bikeathon-completed
====================================== [15] – 6/27/2011 – “Share a Star” Supports Laura on Monday, 27 June 2011. Jessica L E Taylor, the founder of the “Share a Star” charity gave Laura a personalised gift of a Star to hold with her when visiting the hospital having treatment and to take to America with us when we visit the clinic
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/share-a-star-supports-laura
====================================== [16] – 7/4/2011 – Prima Montessori Family Fun Day! on Monday, 04 July 2011. Jacobs nursery held a fun day on sunday to help raise money for Laura’s fund!
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/prima-montessori-family-fun-day
====================================== [17] – 7/8/2011 – Golf Tournament Raises £4,040! on Friday, 08 July 2011. Laura’s father in law Les and his good friend Len Meaking arranged a golf tournament on wednesday to raise money for Laura
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/golf-tournament-raises-4040
====================================== [18] – 7/8/2011 – Broken the £50,000 Barrier! – Update on Laura on Friday, 08 July 2011. Following on from the golf tournament we have now broken the £50,000 barrier!
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/broken-the-50000-barrier-update-on-laura
====================================== [19] – 7/10/2011 – Local Man Donates £5,000 ! on Sunday, 10 July 2011. Lee, a local man has donated £5,000 to Laura’s fund after reading about her story on a leaflet in a shop near Jacobs nursery
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/local-man-donates-5000
====================================== [20] – 7/30/2011 – Welcome to Houston! on Saturday, 30 July 2011. NOW THAT’S A SIGN WE DIDN’T THINK WE WOULD SEE UNTIL AT LEAST OCTOBER!
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/welcome-to-houston
====================================== [21] – 8/3/2011 – Consultation Day on Wednesday, 03 August 2011. WE HAD A MIXTURE OF FEELINGS THIS MORNING. TODAY AT 11:30AM WAS CONSULTATION DAY AT THE CLINIC…
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/consultation-day
====================================== [22] – 8/4/2011 – FDA Approval! on Thursday, 04 August 2011. We just got a call from the clinic and Laura has now been approved for treatment by the FDA much quicker than we thought!
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/fda-approval
====================================== [23] – LAURA’S TREATMENT IN AMERICA
—————————————————————— http://www.hopeforlaurafund.co.uk/us-treatment
====================================== [24]
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/frontpage/2
====================================== [25] – 8/6/2011 – IV fitted all set for Monday on Saturday, 06 August 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/iv-fitted-all-set-for-monday
====================================== [26] – 8/8/2011 – Kent is near Wales?? on Monday, 08 August 2011. ….i’ll explain the title in a minute :o) Today was first day of antineoplaston medicine at the Burzynski Clinic!
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/kent-is-near-wales
====================================== [27] – 8/18/2011 – Treatment Progress Update on Thursday, 18 August 2011. Has it really been 10 days since i’ve written the last Blog update?!
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/treatment-progress-update
====================================== [28] – 8/24/2011 – Our american journey comes to an end.. on Wednesday, 24 August 2011. After what seems like months, but is only three weeks we have come to the end of this part of our journey.
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/our-american-journey-comes-to-an-end
====================================== [29] – 9/7/2011 – Update since we got back home on Wednesday, 07 September 2011. Sorry for the Radio silence over the past few weeks!
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/update-since-we-got-home
====================================== [30] – 9/9/2011 – Stable Tumour! on Friday, 09 September 2011. Laura had an MRI scan on monday and we got a call from the clinic last night to go over the results
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/stable-tumour
====================================== [31] – 9/15/2011 – Music Festival – Chatham, Kent! on Thursday, 15 September 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/music-festival-chatham-kent
====================================== [32] – 10/3/2011 – Remembering brave friends on Monday, 03 October 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/remembering-brave-friends
====================================== [33] – 10/21/2011 – MRI results day on Friday, 21 October 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/mri-results-day
====================================== [34] – 11/21/2011 – Update for November 2011 on Monday, 21 November 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/update-for-november-2011
====================================== [35] – 11/30/2011 – MRI Scan Day! on Wednesday, 30 November 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/mri-scan-day
====================================== [36] – 12/6/2011 – MRI 2nd Opinion on Tuesday, 06 December 2011.
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/mri-2nd-opinion
====================================== [37] – 12/9/2011 – Cancer sufferer Laura Hymas has miracle ‘cure’
—————————————————————— http://www.kentonline.co.uk/kentonline/home/2011/december/9/cancer_sufferer_laura_hymas.aspx
====================================== [38] – 12/21/2011 – Visit to the NHS Oncologist on Wednesday, 21 December 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/visit-to-the-nhs-oncologist
====================================== [39] – 12/31/2011 – Happy New Year! on Saturday, 31 December 2011
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/happy-new-year
====================================== [40] – 1/12/2012 – What a start to 2012! Amazing News! on Thursday, 12 January 2012
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/what-a-start-to-2012-amazing-news
====================================== [41] – 1/12/2012 – Video Interview with Dr Burzynski about Laura! on Thursday, 12 January 2012
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/interview-with-dr-burzynski-about-laura
====================================== [42] – 1/12/2012 – Video Interview with Dr Burzynski about Laura! on Thursday, 12 January 2012. Click Here if the video doesn’t load –
——————————————————————
——————————————————————
This is an interview with Dr Burzynski discussing Laura’s case and latest scan results!
Please take a look at the video – you’ll be probably as shocked as we were at what Dr Burzynski says at the end of the interview!
======================================
====================================== [43] – 1/13/2012 – Cancer patient’s husband hits back at critics… Jan 13th, 2012 @ 12:54 am › Jonathan Smith-Squire
—————————————————————— http://sellyourstoryuk.com/2012/01/13/burzynski-critics/
====================================== [44] – 2/2/2012 – JustGiving Page & Text Donation on Thursday, 02 February 2012
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/justgiving-page-text-donation
====================================== [45] – 2/4/2012 – Laura & Hannah Video on Saturday, 04 February 2012
—————————————————————— http://www.hopeforlaurafund.co.uk/blog/item/laura-hannah
====================================== [46] – If youre not able to view the video of Laura and Hannah click here
——————————————————————
This page is linked to:
===================================== Critiquing: Dr. Michael A. Friedman, Dr. Mark G. Malkin, Dr. Mario Sznol, Robert B. Lanman, Memorial Sloan-Kettering Cancer Center, Mayo Clinic, Department of Health & Human Services (HHS), Public Health Service, Quality Assurance and Compliance Section, Regulatory Affairs Branch (RAB), Cancer Therapy Evaluation Program (CTEP), Division of Cancer Treatment (DCT), National Cancer Center (NCI) at the National Institutes of Health (NIH), Stanislaw Burzynski: On the arrogance of ignorance about cancer and targeted therapies
—————————————————————— https://stanislawrajmundburzynski.wordpress.com/2013/09/08/critiquing-stanislaw-burzynski-on-the-arrogance-of-ignorance-about-cancer-and-targeted-therapies/
======================================
[24] – 1995 (10/27/1995) – Burzynski 7 page letter to Richard Klausner, M.D., Director, National Cancer Institute (NCI), National Institutes of Health (NIH)
I was shocked to read the Cancernet “fact sheet” the NCI has been distributing about the cancellation of the clinical trials of antineoplastons, the anti-cancer drugs I discovered and developed
I find it scandalous that a government agency is putting out a public document containing such blatantly false information
Let me remind you that the only reason the clinical trials of antineoplastons were stopped is that NCI would not conduct them as per our written agreement
NCI’s “fact sheet” tries to obscure that simple fact with misinformation such as the following:
“In 1991, a “best case series” review was conducted by the National Cancer Institute (NCI) to evaluate clinical response in a group of patients treated at Dr. Burzynski’s Houston facility
For this review, Dr. Burzynski selected from his entire clinical experience 7 brain tumor patients whom he felt had a beneficial effect from antineoplastons.”
This misstatement is obviously calculated to make the reader think that in my entire clinical experience I have had only 7 patients who benefitted from antineoplaston treatment, which is wildly untrue
In fact, I prepared not 7, but dozens of cases for the NCI reviewers
As you must know, the reviewers were able to spend just one day at the clinic–enough time to review only 7 cases
Cancernet then compounds that misstatement with the following:
“This series did not constitute a formal clinical trial, since it was a retrospective review of medical records, did not include all available information, and included only cases selected by Dr. Burzynski” (my italics)
To the contrary, the patient medical records that NCI scientists reviewed were exhaustive and did contain “all available patient information.”
In fact, Michael Hawkins, M.D., leader of the site visit team, specifically complimented me on how complete and well-organized they were
The next misstatement is the following:
“The reviewers of this series determined that there was presumptive evidence of antitumor activity . . .”
Pg. 2
Now that the NCI’s Cancer Therapy Evaluation Program (CTEP) is under fire for misconduct in these clinical trials, it is rewriting history
The statement of the NCI scientists who actually reviewed patient records was quite different from the above
Their report (minutes of Decision Network committee meeting enclosed) stated that “The site visit team determined that antitumor activity was documented in the best case series and that the conduct of Phase II trials was indicated to determine the response rate” (my italics)
In other words, according to the site visit team, there was no question that the treatment worked in the cases reviewed
All that remained to be determined were the numerator and the denominator
Even the NCI’s own previous “fact sheet” on antineoplastons, dated 2/17/1994, (enclosed), states that
“The NCI reviewed 7 cases of patients with primary brain tumors that were treated by Dr. Burzynski with antineoplastons and concluded that antitumor responses occurred” (my italics)
But by far the most outrageous misstatement is the following:
“On 8/18/1995, the studies were closed because a consensus could not be reached with Dr. Burzynski on the proposed changes to the protocol to increase accrual, and there was no hope of completing the studies in a timely manner.”
The NCI never made any effort to “reach a consensus.”
Instead, it simply violated the written protocol we had agreed upon
Without informing me, NCI changed the rules to allow patients with any size or number of tumors, low performance scores, and spinal cord metastases
in other words, NCI was accepting patients whose brains and spinal cords were literally consumed by large malignant tumors–patients so advanced as to have no chance whatsoever
When I found out and insisted that NCI either conduct the study as agreed or inform patients that I felt it was conducting the study improperly, NCI cancelled it
The above is all well documented
While we were still in the negotiating stages, Michael Friedman, M.D. of the NCI wrote me a letter dated 11/2/1993 (enclosed) “. . . we will accede to all the modifications that you have stipulated.”
Dr. Friedman specifically agreed to exclude patients with:
* tumors larger than 5 cm (2 inches)
* multiple tumors
* metastases to spinal cord
* Karnofsky performance scores less than 70%
Based on Dr. Friedman’s written assurance that NCI would honor this exclusion criteria, I provided NCI with a large quantity of antineoplastons, and the clinical trial began
on 3/23/1994, Mario Sznol, M.D., of NCI wrote me proposing that NCI drop the exclusion for multiple tumors and spinal cord metastases, increase the maximum tumor size from 5 cm to 8 cm, and lower the Karnofsky score from 70 to 60 (enclosed)
in a response dated 4/19/1994 (enclosed), I wrote back that I would be glad to help NCI design a separate trial for such advanced patients, using a more aggressive dosage schedule
But I made it clear that it would be unethical to use the current dosage schedule on such patients since my experience had shown that such patients do not respond well to it
Pg. 3
As proof , I pointed out that in the NCI’s own review of patients treated with antineoplastons, the only ones who had less than 50% tumor shrinkage were exactly those with tumors greater than 5 cm
I did not hear back from NCI and assumed the matter had been dropped
Nearly one year later–in 3/1995–I learned that NCI had made all the changes to which I had objected
In fact, NCI went even further
Rather than raising the maximum tumor size from 5 to 8 cm as the NCI earlier suggested, it began accepting patients with any size tumor
I insisted that NCI either honor our agreement or change the Informed Consent statement (which patients must read and sign) to reflect the fact that I, the drug’s discoverer and developer, felt that the treatment was unlikely to be effective in such advanced patients in the doses being used
Rather than honor it’s commitment to conduct the study as agreed, NCI cancelled it
I find it particularly curious that now neither NCI nor Memorial Sloan-Kettering Cancer Center (MSK) will take responsibility for changing the exclusion criteria, and are instead pointing fingers at each other
in his letter of 4/3/1995 (enclosed), Dr. Sznol repeatedly refers to the “revised” eligibility criteria proposed by the [Memorial Sloan-Kettering] investigators” (my italics)
But, in a letter to John Lewis, M.D., of Memorial Sloan-Kettering’s Institutional Review Board dated 1/31/1995 (enclosed), the Chief Investigator, MSK’s Mark Malkin, M.D., writes that
“Further amendments, as described below, have been made at the request of NCI” (my italics)
If the changes to the protocol are as the NCI would have the world believe, why is everyone connected to them scurrying to disavow responsibility?
An even more serious matter is what appears to be the investigator’s relentless violations of the treatment protocol
Looking at the treatment summaries compiled by Theradex Corporation, the medical reporting company hired by NCI to compile and tabulate patient treatment data, it would appear that investigators violated the agreed-upon protocol in every patient treated
Apparent violations include the removal of patients from treatment who had no tumor growth (including one patient who, during subsequent surgery, was found to have no cancer cells remaining), and the removal of a patient for “skin reactions” caused not by antineoplastons, but by another drug patient was receiving, DPH
This is clear due to the fact that the patient’s skin condition worsened when he was taken off antineoplastons
It improved only after DPH was discontinued
The summaries provided by Theradex are somewhat sketchy, so I asked to review the complete records of patients tested–which Dr. Friedman had specifically promised to provide
NIH lawyer Robert Lanman replied in a letter dated 8/23/1995 (enclosed) that the NCI did not have any such records
In fact, several patients were treated at NCI and of course NCI has their complete medical records
When I demonstrated this by sending Mr. Lanman copies of patient records obtained by a patient’s family from NCI, he admitted in fact NCI does have patient records, but refused to release them
And he disregarded his own misstatements of fact by saying that
“Given that you apparently have already obtained at least one of the patient’s records, we fail to understand why you are perusing this matter” (letter from Robert Lanman dated 10/5/1995 enclosed)
Mr. Lanman also claims that NCI has “no such commitment” to release medical records of patients treated with antineoplastons
And Dr. Friedman, in a letter dated 9/19/1995 (enclosed), writes that Dr. Burzynski’s request for “detailed records” has been satisfied by the sketchy Theradex treatment summaries
Pg. 4
Both these statements directly contradict Dr. Friedman’s letter of 11/2/1993 (enclosed), in which he promises that
“In accordance with your letter, we will arrange a review of data after accrual of the 1st 5-6 patients, which should occur 6 months after the study has been initiated
This should be sufficient to assure that the conduct of the study is satisfactory
The Theradex database is also available . . .” (my italics)
In other words, Dr. Friedman promised to provide me with patient medical records, recognizing that the Theradex summaries are something quite separate
In that same 9/19/1995 letter, Dr. Friedman writes that
“We have no individual patient records in our possession in addition to the Theradex reports.”
Either he is deliberately misstating the facts, or he is out of touch with the Cancer Therapy Evaluation Program that he runs
Dr. Klausner, I request that you immediately withdraw the “fact sheet” the NCI is distributing which contains numerous and outrageous misstatements and distortion of fact
Thank you for your attention to this matter
SRB/cf
cc:
3+ pgs cc:
——————————————————————
======================================
1993 (11/2/1993) – Dr. Michael Friedman to Burzynski
1994 (2/17/1994) – NCI “fact sheet”
1994 (3/23/1994) – Dr. Mario Sznol to Burzynski
1994 (4/19/1994) – Burzynski to Dr. Mario Sznol
1995 (1/31/1995) – Dr. John L. Lewis
1995 (4/3/1995) – Dr. Mario Sznol to Burzynski
1995 (8/18/1995) –
1995 (8/23/1995) – Robert B. Lanman to Burzynski
1995 (9/19/1995) – Dr. Michael A. Friedman to Burzynski
1995 (10/5/1995) – Robert B. Lanman to Burzynski
======================================
Didymus Judas Thomas' Hipocritical Oath Blog 