[hoonosewot]

(Original post by Holz888)
rather than repeatedly calling it nonsense without directing the reader to empirical evidence, which is all I've seen.

The OP linked to 2 fairly thorough debunks of his work. From those you should be able to find links to the trials where people have tried to replicate Burzynskis work.

[Orinincandenza]

(Original post by Holz888)
I know what evidence based medicine is. You all seem to have picked up on one sentence of my argument and are commenting on it as if that's all I said. Maybe I should have made myself clearer, but this is my problem with the whole thing. Before I make a judgement, I like to consider different arguments. Whenever I try to read something against his treatment, the author will start by criticising the science, then run out of things to say and start criticising him as a person instead. It is perfectly acceptable to act negatively about treatment if the science is all rubbish, but I was conveying my confusion as to why some Amercian doctors seem to have such an issue with him as a person. I just want to read something objective.

Well the thing is it starts out objectively, does this treatment have evidence to back it up ? But then as soon as people realise it doesn't and start thinking of him as a charlatan, well he has no hope of an objective opinion. I mean he's selling fake treatments (presumably knowingly, considering he has a medical license) to children for vast amounts of money, once you know that of course people don't have an objective opinion of him. Although yes of course the critiques of him as a person and his treatments should be separate.

[Richs01]

Hi -

I don't normally reply or post on forums but I feel a little compelled to do so here. I am the father of the only child now remaining in the UK on Antineoplaston treatment.

I still find it amusing that people use the argument that Dr Burzynski's treatment is expensive. Nobody ever mentions the 15% brain tumour survival rate of radiotherapy and chemotherapy that costs the UK taxpayer many 10's of millions of pounds each year. 15%? In my line of work, if that was the success rate I would be fired.

I am not going to even try to get into the science of the treatment. I have met Dr Burzynski several times. His treatment does work, it has a good success rate, and I have met the patients for whom it has worked (in the UK). I also had the pleasure of meeting Billie before she died.

I am guessing that, as this is a student discussion website, that the majority of users might not have their own kids yet.

Perhaps some of you might think twice before effectively committing my daughter to an untimely death with your treatment, whereas antineoplastons have not only stopped my daughters tumour growing, but they are now having a marked effect on her health improvement. And she has (fortunately) not had radiotherapy or chemo.

Please, PLEASE think twice before posting damning comments about what is a last line for a lot of people. Conventional medicine doesn't work with these things. So we try something else.

Incidentally, we raised £200,000 in 12 weeks. We received more than 3000 donations from all over the world. That speaks volumes for what people think of conventional medicine.

Now go back to your text books, and I will return to my very real world of trying to let my daughter survive.

Cheers

Richard Saunders (father of Amelia)

[Orinincandenza]

(Original post by Richs01)
Hi -

I don't normally reply or post on forums but I feel a little compelled to do so here. I am the father of the only child now remaining in the UK on Antineoplaston treatment.

I still find it amusing that people use the argument that Dr Burzynski's treatment is expensive. Nobody ever mentions the 15% brain tumour survival rate of radiotherapy and chemotherapy that costs the UK taxpayer many 10's of millions of pounds each year. 15%? In my line of work, if that was the success rate I would be fired.

I am not going to even try to get into the science of the treatment. I have met Dr Burzynski several times. His treatment does work, it has a good success rate, and I have met the patients for whom it has worked (in the UK). I also had the pleasure of meeting Billie before she died.

I am guessing that, as this is a student discussion website, that the majority of users might not have their own kids yet.

Perhaps some of you might think twice before effectively committing my daughter to an untimely death with your treatment, whereas antineoplastons have not only stopped my daughters tumour growing, but they are now having a marked effect on her health improvement. And she has (fortunately) not had radiotherapy or chemo.

Please, PLEASE think twice before posting damning comments about what is a last line for a lot of people. Conventional medicine doesn't work with these things. So we try something else.

Incidentally, we raised £200,000 in 12 weeks. We received more than 3000 donations from all over the world. That speaks volumes for what people think of conventional medicine.

Now go back to your text books, and I will return to my very real world of trying to let my daughter survive.

Cheers

Richard Saunders (father of Amelia)

Hello Mr. Saunders

I'd like to clarify what I thought when I started this thread. As far as this goes, these are my only thoughts on the matter, then I would like to clarify some matters which you have mentioned. I would greatly appreciate if you could humour me by reading it.

Firstly, to know (know in a scientific sense meaning "to be certain beyond all reasonable doubt and as far as is possible") that a treatment for cancer works effectively, a scientific test must be performed. Ideally this would be a randomized control test (explained here http://www.ajronline.org/content/183/6/1539.full). It must then be peer-reviewed by other scientists to make sure it has been carried out properly. No scientific test has been performed that shows the effectiveness of the treatment. If it was published tomorrow and successfully peer-reviewed I would agree with you and fully support the treatment. As it has not I cannot. As you mention i can't imagine what this process is like for a parent, and I would not expect you to deal with this in a rational manner. I believe you that your daughter has gotten better since taking the treatment but as explained this does not show the efficiency of the treatment.

To address your points, I understand that chemotherapy/ radiotherapy have hugely varying results, for Acute lymphoblastic leukemia survival rates are upwards of 85% (as shown in these randomized control tests http://scholar.google.co.uk/scholar?...ed=0CDUQgQMwAA) but is often ineffective or useless for many types of cancer. However when you visit an NHS doctor, he will give you the most effective treatment, whether this is chemotherapy, monoclonal antibodies, tyrosine kinase inhibitors or other treatments, this is their duty and one they take seriously.

Finally, I would like to clarify why i (and others) made "damming comments about what is a last line for many people". I'm worried about a man making money off lying to parents and children about being able to prevent them from dying when he has no reason to believe that he can. I'm sure you can empathise. If a man decided to make a mixture of raspberry and caster oil and sold it as a cure for cancer, that would be literally equivalent to this, it is an extract of urine. I understand that as a parent you may be willing to pay for this, but i hope you can understand why I think the man that is selling the treatment (not the parent) is wrong.

Of course i dont expect you to agree but i hope you can keep an open mind (I have tried to) and see my point of view.

Regards,

O.I.

[Richs01]

Thanks O.I.

Two points in response.

1. Brain stem tumours have a zero percent success rate with chemotherapy and radiotherapy in the Uk. Leukaemia receives around £14 million of government funding for research. Brain tumours receive £1 million. No wonder leukaemia has a better survival.

2. Try explaining all of this to the two patients in the UK who should be dead, and yet the 'raspberry and castor oil' that they have taken has saved their lives. That is some tonic! To be honest I don't care if it is rats urine, I know it works and I don't need to be told otherwise.

[Democracy]

(Original post by Richs01)
Hi -

I don't normally reply or post on forums but I feel a little compelled to do so here. I am the father of the only child now remaining in the UK on Antineoplaston treatment.

I still find it amusing that people use the argument that Dr Burzynski's treatment is expensive. Nobody ever mentions the 15% brain tumour survival rate of radiotherapy and chemotherapy that costs the UK taxpayer many 10's of millions of pounds each year. 15%? In my line of work, if that was the success rate I would be fired.

I am not going to even try to get into the science of the treatment. I have met Dr Burzynski several times. His treatment does work, it has a good success rate, and I have met the patients for whom it has worked (in the UK). I also had the pleasure of meeting Billie before she died.

I am guessing that, as this is a student discussion website, that the majority of users might not have their own kids yet.

Perhaps some of you might think twice before effectively committing my daughter to an untimely death with your treatment, whereas antineoplastons have not only stopped my daughters tumour growing, but they are now having a marked effect on her health improvement. And she has (fortunately) not had radiotherapy or chemo.

Please, PLEASE think twice before posting damning comments about what is a last line for a lot of people. Conventional medicine doesn't work with these things. So we try something else.

Incidentally, we raised £200,000 in 12 weeks. We received more than 3000 donations from all over the world. That speaks volumes for what people think of conventional medicine.

Now go back to your text books, and I will return to my very real world of trying to let my daughter survive.

Cheers

Richard Saunders (father of Amelia)

Hi

If antineoplastons do everything this chap claims they do (i.e. attack cancer at every level and by the main mechanisms by which it develops and spreads) then why does he not have a success rate as close to absolute as it is possible for a treatment to achieve? Why do his results fall apart when anyone else seems to want to reproduce them or apply them in a randomised way? And furthermore, why has he not published in a high impact journal and won the Nobel Prize for single handedly elucidating the mechanism to reverse and restore every cancerous cell in the body?

I will indeed return to my textbooks, because I paid a not inconsiderable amount of money to study at one of the UK's top cancer institutes for a reason: so that I could approach matters like this from a foundation based on reason, not emotion. However junior and unqualified I may be, if my opinion is based on logic, it's valid.

All the best to you, your family and your daughter.

D

[Ric Schiff]

Normally I don't bother spending my time discussing Dr. Burzynski in open forums like this because it’s a waste of my time to try and educate one want-to-be medical investigator. I'm going to bother because Mr. Saunders has chosen to enter the fray, and frankly he and his child are really the point here.

Your notions about Burzynski show that you not only have a "website" understanding of him and his treatment, but you're a little slow on the realities of having cancer as well.

Randomized studies (for non-toxic treatments) are as antiquated a way for verifying efficacy in a treatment as we could possibly get. Do you still have your lava lamp? Double blind studies mean that somebody gets to die so you can prove what?

Have you missed the conclusion of Dr. Burzynski's Phase Two Brainstem Glioma Clinical trails? Hummmm....it posted better results than all brain tumor clinical trails ever done anywhere, all together? I'm not sure what science you're disputing there. I am no friend of the FDA, but it was their study. I know because I helped set Dr. Burzynski’s clinical trials with the FDA up. I guess between us, I am the only one who has ever actually met with the FDA or set up clinical trails?

When you speak of other studies, I assume that you mean our friends at the Sloan Kettering Clinic? The same ones who changed the clinical parameters of the joint trial that they were suppose to be doing? Apparently you have not viewed the letters posted on the Internet back and forth? Sloan and the NIH acted completely unethically. They admitted patients with much larger tumors than the protocol allowed for, and refused to increase the matching dosages to compensate. Burzynski withdrew his support because of their unethical actions, and you are criticizing him? Surely you saw the Burzynskimovie.com where in the director shows that the NIH was in fact trying to steal Dr. Burzynsi’s treatment? And you still believe in them?

You like Peer Review articles? What if they don't like you? What if your cure will turn their profitable "treatments" out to pasture. Who is it that you think decides what is published and what is not?

Lets look at your conventional friends shall we? As Mr. Sanders has already discovered, all of their patients die....all of them! The results for Childhood Leukemia are even higher than you claim...more like 90%. What you're missing is that they are not brain tumors. VP16. Cytosine, Vincrystine were all approved for use in Leukemia....once a treatment is approved for use, a doctor can prescribe it for literally any other purpose. You knew that right, I mean before you graced us with your "scientific" opinion? You know that none of those chemos are curative for brain tumors right?

Please, where are your precious scientific studies for toxic chemotherapy and radiation? They do exist...they just fail miserably. And they fail again and again yet they keep being the standard of care? Do you have any idea what the profit margin is for Pharmaceutical companies who "sponsor" those scientific doctors you are so fond of, running their same clinical trails over and over again while each patient dies a horrible death?

You don't like antidotal, empirical evidence? When you get a brain tumor, I hope you chose your favorite Pharmaceutically sponsored doctor to give you his favorite off the shelf treatment.

For anyone else, given the political realities of the cancer industry, I would seek out patients whom I can speak to that are still alive....apples for apples, brain tumor for brain tumor, not brain tumor for Leukemia? Strangely this is offered for leukemia patients….

Who am I? I am the guy who took his daughter to conventional treatments, made her suffer indescribably, then found doctor Burzynski. I watched UCSF document her cure, then document her death from neurological necrosis...the cure didn't matter, they had already killed her. Burzynskipatientsgroup.org Crystin Schiff.

Please, go to the website and then show me any other group of brain tumor patients who exalt their doctor similarly! Anywhere?

Mr. Saunders has a long hard road to haul. He gets no guarantees, no support for his child's treatment (even though far less costly than standard treatments). He likely gets minimal if any support from the scientific world you think that you live in. All so that he can give his daughter not only the best chance of survival that she has, but the only chance!

And helping him down that road is who.........you?

Anyone can please feel free to contact me at any time. I have been associated with Dr. Burzynski for the last 18 years, my story is no secret nor am I.

Most importantly, whatever we can do to help Mr. Saunders....it won't be enough!

Ric Schiff

[Orinincandenza]

(Original post by Ric Schiff)
Normally I don't bother spending my time discussing Dr. Burzynski in open forums like this because it’s a waste of my time to try and educate one want-to-be medical investigator. I'm going to bother because Mr. Saunders has chosen to enter the fray, and frankly he and his child are really the point here.

Your notions about Burzynski show that you not only have a "website" understanding of him and his treatment, but you're a little slow on the realities of having cancer as well.

Randomized studies (for non-toxic treatments) are as antiquated a way for verifying efficacy in a treatment as we could possibly get. Do you still have your lava lamp? Double blind studies mean that somebody gets to die so you can prove what?

Have you missed the conclusion of Dr. Burzynski's Phase Two Brainstem Glioma Clinical trails? Hummmm....it posted better results than all brain tumor clinical trails ever done anywhere, all together? I'm not sure what science you're disputing there. I am no friend of the FDA, but it was their study. I know because I helped set Dr. Burzynski’s clinical trials with the FDA up. I guess between us, I am the only one who has ever actually met with the FDA or set up clinical trails?

When you speak of other studies, I assume that you mean our friends at the Sloan Kettering Clinic? The same ones who changed the clinical parameters of the joint trial that they were suppose to be doing? Apparently you have not viewed the letters posted on the Internet back and forth? Sloan and the NIH acted completely unethically. They admitted patients with much larger tumors than the protocol allowed for, and refused to increase the matching dosages to compensate. Burzynski withdrew his support because of their unethical actions, and you are criticizing him? Surely you saw the Burzynskimovie.com where in the director shows that the NIH was in fact trying to steal Dr. Burzynsi’s treatment? And you still believe in them?

You like Peer Review articles? What if they don't like you? What if your cure will turn their profitable "treatments" out to pasture. Who is it that you think decides what is published and what is not?

Lets look at your conventional friends shall we? As Mr. Sanders has already discovered, all of their patients die....all of them! The results for Childhood Leukemia are even higher than you claim...more like 90%. What you're missing is that they are not brain tumors. VP16. Cytosine, Vincrystine were all approved for use in Leukemia....once a treatment is approved for use, a doctor can prescribe it for literally any other purpose. You knew that right, I mean before you graced us with your "scientific" opinion? You know that none of those chemos are curative for brain tumors right?

Please, where are your precious scientific studies for toxic chemotherapy and radiation? They do exist...they just fail miserably. And they fail again and again yet they keep being the standard of care? Do you have any idea what the profit margin is for Pharmaceutical companies who "sponsor" those scientific doctors you are so fond of, running their same clinical trails over and over again while each patient dies a horrible death?

You don't like antidotal, empirical evidence? When you get a brain tumor, I hope you chose your favorite Pharmaceutically sponsored doctor to give you his favorite off the shelf treatment.

For anyone else, given the political realities of the cancer industry, I would seek out patients whom I can speak to that are still alive....apples for apples, brain tumor for brain tumor, not brain tumor for Leukemia? Strangely this is offered for leukemia patients….

Who am I? I am the guy who took his daughter to conventional treatments, made her suffer indescribably, then found doctor Burzynski. I watched UCSF document her cure, then document her death from neurological necrosis...the cure didn't matter, they had already killed her. Burzynskipatientsgroup.org Crystin Schiff.

Please, go to the website and then show me any other group of brain tumor patients who exalt their doctor similarly! Anywhere?

Mr. Saunders has a long hard road to haul. He gets no guarantees, no support for his child's treatment (even though far less costly than standard treatments). He likely gets minimal if any support from the scientific world you think that you live in. All so that he can give his daughter not only the best chance of survival that she has, but the only chance!

And helping him down that road is who.........you?

Anyone can please feel free to contact me at any time. I have been associated with Dr. Burzynski for the last 18 years, my story is no secret nor am I.

Most importantly, whatever we can do to help Mr. Saunders....it won't be enough!

Ric Schiff

Hello,

This thread is a little different to what it hoped it would be so i will summarise.

I wanted to ask the community if they thought the sale of unproven cancer treatments to desperate parents was wrong, i'd say the answer has been an unequivocal yes. As previously referenced there are significant critiques of the antineoplaston treatment http://www.sciencebasedmedicine.org/...enyl-butyrate/ http://www.quackwatch.org/01Quackery...urzynski1.html which are very interesting reads and i recommend to anyone.

I do not expect desperate parents of late children to agree with me, for obvious reasons, as i dare say i would not in your position.

N.B I am a little perplexed as to why both parents of deceased children and official representatives of Buzsynski have created accounts just to comment on this student discussion.

[Richs01]

(Original post by Orinincandenza)
Hello,

This thread is a little different to what it hoped it would be so i will summarise.

I wanted to ask the community if they thought the sale of unproven cancer treatments to desperate parents was wrong, i'd say the answer has been an unequivocal yes. As previously referenced there are significant critiques of the antineoplaston treatment http://www.sciencebasedmedicine.org/...enyl-butyrate/ http://www.quackwatch.org/01Quackery...urzynski1.html which are very interesting reads and i recommend to anyone.

I do not expect desperate parents of late children to agree with me, for obvious reasons, as i dare say i would not in your position.

N.B I am a little perplexed as to why both parents of deceased children and official representatives of Buzsynski have created accounts just to comment on this student discussion.

For the simple reason that we are all passionate about cancer treatment and the way the industry is run. We have first hand experience of the 'treatments' offered and they just don't work. I thank God that I didn't have to put my daughter through any of it, and neither will I.

Pointing people to links about scientific critiques of Dr Burzynskis treatment is fine, you are all entitled to your opinions. But stating that his treatment is a fraud, doesn't work, or in some way isn't comparable to radiotherapy or chemotherapy is just plain wrong. It is documented and viable - people just seem to want it not to work, which is very sad. I speak from personal experience of how it does work. And I am not a bereaved parent, I am the parent of a child fighting for her life in the public eye, who so far seems to be alive only because we made the decision to take her to Houston and get her on Antineoplaston treatment.

Cheers

Richard

[hammer13]

As someone who knows of little Billie and her family I feel very uncomfortable reading this. If your child was as ill as Billie was you would try absolutely anything to try and make them better. This was the only chance they had. I for one will never regret donating money to such a worthy cause. RIP sweet angel x

[vickyrkenya]

Dear all,

Please see here for some critical analysis of the Burzynski treatment.

http://www.thetwentyfirstfloor.com/?p=4071

Whether it works or not (the three dead children in the last month alone, and an adult just yesterday would seem to indicate not). It is an out of date drug, better alternatives are now available (and he knows it, he is just swelling his retirement fund). It is possible, by deriving its mechanism of action from other very similar drugs (Burzynski is unbelievably secretive about all this-apart from when he spews out lies), that it has some effect against tumours, however other groups have shown that it will not be curative...it may provide some reduction in growth, but this is the same as chemo/radiotherapy, and is not the overall aim of treatment of course. The patients he uses for 'advertising' are mostly currently on treatment, and use the fact that they have survived 9 months when the predicted survival was 6 months for example as a 'success' or 'cure'. The man is morally bankrupt, but most definitely not financially bankrupt - his patients may die, but he is a very rich man. Oh and the treatment does have side effects, largely owing to the gigantic sodium load - seizures, kidney failure, strokes...all reported by his patients unsettlingly frequently.

[Ryuujin]

Just to point out a few things which may not be clear :
- yes, it's expensive. Burzynski is using an old orphan drug, for which he's clearly overcharging. And anyway, it's not so usual to charge patients for experimental drugs, nor for admission into a trial.
- when Burzynski claim his treatment to be more efficient than others, he's referring to the response rates he calculated. And seeing that some patient he claimed to be cured died a few month later, I wouldn't be surprised if his response rates were completely meaningless.
When you check the survival rates he published, it paints a completely different picture. Even while mixing cancers which show different prognosis, it's nothing to be amazed at.
- choosing Burzynski treatment may, in some cases, endanger the patient.On top of his treatment counter-effects (and some patients died from it : it's not non-toxic), when it's a failure, people often find themselves pennyless, and may be unable to enroll in another trial.