Respectful Insolence

Another Burzynski patient dies

If there’s one thing that practitioners of dubious cancer therapies rely upon, it’s testimonials. If there’s one such practitioner who really, really relies on testimonials, it’s Dr. Stanislaw Burzynski, founder of the Burzynski Clinic. Dr. Burzynski is known for what he refers to as “antineoplaston” therapy (which he massively oversells and is currently rebranding as sodium phenylbutyrate) and a highly dubious “personalized gene-targeted cancer therapy.” The results of these testimonials are patients from all over the world organizing fundraisers, or, as I put it, harnessing the generosity of kind-hearted strangers to pay for woo. Indeed, it was just last week that I wrote about the case of a child in New Zealand whose parents are trying to raise $375,000 (NZ) to take their child to the Burzynski Clinic to treat her brain tumor. Truly, the power of Dr. Burzynski’s cult of personality is strong.

One thing I’ve noticed since I first started paying attention to Dr. Burzynski again is that there are actually a lot of these stories. I set up a Google Alert to notify me of mentions of Dr. Burzynski or his clinic on the web or in blogs, and I’m constantly getting new notices. One other thing that I’ve noticed is something that Dr. Burzynski won’t tell you, and that’s that, if you look, you’ll find quite a few examples of Burzynski Clinic patients who, unfortunately, die of their disease. For example, just such a notice popped up yesterday, this time from Singapore. This is a young woman named Isabelle Tan:

Her parents later found her passed out on the bathroom floor and took her to Singapore General Hospital (SGH).

There, doctors confirmed that the growth in her brain was a tumour. It had grown by 30 per cent since it was discovered.

An operation was performed to remove most of the tumour, followed by radiotherapy sessions and medication.

Last September, her family took her to Burzynski Clinic, a cancer centre in Houston, Texas, in the United States, to seek further treatment.

Isabelle returned to Singapore in January and was admitted to the intensive-care unit at SGH, where she remained until her death.

Unfortunately, Ms. Tan suffered the same fate as Brynlin Sanders and quite a few others who can be found just by searching public records.

My purpose in writing this is not to gloat. Really, it’s not. Rather, it’s simply to point out that the evidence that Dr. Burzynski likely doesn’t do any better than conventional therapy is actually out there, hidden in plain site. It’s there in the stories of patients like Brynlin Sanders and Isabelle Tan. It’s also there in the lack of reliable evidence showing that Dr. Burzynski can save patients with cancer that conventional cancer doctors cannot. Pointing this out at every opportunity is essential, because the Burzynski publicity machine continues unabated, drawing the desperate and unwary into its gaping maw.

That machine functions largely through word of mouth and, after it became such a powerful tool for communication, the Internet. It consists of a network of advocacy groups who promote Burzynski and defend him whenever journalists or bloggers have the temerity to report on Burzynski from a science-based view, with proper skepticism for his claims. It consists of credulous moviemakers who make credulous paeans to Dr. Burzynski, complete with persecution conspiracy theories that claim that the Texas Medical Board, the FDA, big pharma, and conventional medicine are all arrayed against the brave maverick doctor Burzynski, who, if you believe the accounts, has single-handedly cured cancer. It consists of vultures who swoop down on critics with vacuous legal threats designed only to silence criticism. Over thirty years have gone by since Burzynski first started building this edifice, and it is now very strong, its foundation consisting of patients like Sanders and Tan and untold thousands who came to Burzynski because he offered them hope when they had none.

We can only hope that Burzynski is finally shut down in April after the Texas Medical Board hears his case again. In the meantime, remember these patients and mourn for them. They couldn’t be saved from the relentless and insatiable growth and invasion of their cancers. that didn’t stop Burzynski from charging huge sums of money to tell them that he could do what conventional medicine could not and save their lives.

Comments

  1. #1 Pinkamena, Panic Pony
    March 7, 2012

    And a pre-emptive [citation needed] to the Burzynski defenders who will inevitably show up and make their claims that his crap has worked for them.

  2. #2 sophia8
    March 7, 2012

    The Burzynski claque will just say either that these people would have lived if they’d just to to Burzynski’s clinic sooner, or that it was the toxic conventional treatment they got that killed them. The same excuses that these despicable snake-oil sellers have always used when a mark dies on them.

  3. #3 sophia8
    March 7, 2012

    And yes, Orac, we should mourn for these people and their families Cancer is a horrible disease and there should be no blame attached to anybody for trying anything that promises a cure.

  4. A blog that I have been following posted an update the other day. They had been raising money to go to Burzynski, and had been treated. The most recent post is a farewell, as the patient in question has died.

    http://amigosofdave.blogspot.com/

    I also found this blog (http://teamdenise.org/) which details Denise’s decisions to forgo chemotherapy in favour of Burzynski. It stopped updating in January 2010, and I haven’t yet been able to tell if this is because she lost interest in updating, or because she died.

  5. #5 herr doktor bimler
    March 7, 2012

    I am impressed by Burzynski’s ability to be both (a) a medical maverick and scourge of the Establishment, whom the powers-that-be are doing their best to suppress [e.g. his movie]; AND (b) a mainstream researcher, working within the system with FDA approval, whose meticulous clinical trials are nearing the end of Phase 2 [e.g. the advertorial promoting him in the NZ Herald]… simultaneously.

    Perhaps it’s a quantum wave / particle duality thing.

  6. #6 D39
    March 7, 2012

    What exactly is wrong with saying that had those patients flew to Houston any sooner, they would still be living if it’s true? I mean give me a break, Dr. Burzynski is NO miracle worker. He’s simply an honest physician trying to change the world of medicine for a healthier future. So what if those patients he helped are calling him God! You’d be bowing down and kissing his feet too had he cured you or any of your loved ones when numerous other MDs said they couldn’t do anything else. There’s a reason so many in the science/medicine community talk down on this man. The primary agenda is to reduce the global population. With 7,000,000,000+ human beings roaming earth right now, you think “curing cancer” is what global elites want to hear? Keep this in mind:
    “A patient cured is a customer lost.”

    I wish nothing but the very best for Dr. Burzynski and his staff.

  7. #7 herr doktor bimler
    March 7, 2012

    He’s simply an honest physician

    Apart from that pesky little fraud conviction.

  8. #8 Burrahobbit
    March 7, 2012

    Re D39

    Cancer is a very poor reducer of human population, striking as it does mainly at older ages. If the “science/medicine”community wanted to reduce human population they would focus on discrediting vaccines as epidemic diseases are the only thing short of (massive) war and (massive) famine that can reduce population.

    Strange that the medical community is attacking the anti vaccine woo…

  9. #9 Matthew Cline
    March 7, 2012

    @D39:

    He’s simply an honest physician trying to change the world of medicine for a healthier future.

    If this were true I’d think:

    1) He’d have published all of the data he’s accumulated so far, rather than only a small portion of it.

    2) He’d have moved onto a phase III clinical trial years ago, rather than repeating phase II ones over and over.

    3) Now that he has a phase III trial open for an enrollment, he’d actually enroll people in it, rather than having a phase III trial that merely exists on paper.

  10. #10 Greenwhat
    March 7, 2012

    So, D39, the “global elites” have the double agenda of killing millions of people, while continuing to sell stuff to millions of people. That must involve some very complex mathematical calculations.

  11. #11 Krebiozen
    March 7, 2012

    I can only conclude that the “Global Elite” are bumbling incompetents, whose best efforts to reduce global population by killing us all have failed. Life expectancy has increased and infant mortality fallen while our reptoid masters wring their hands and gnash their fangs in frustration. “Why won’t those monkeys die??!” they gurgle.

  12. #12 Sam C
    March 7, 2012

    Sophia8 at #3:

    …there should be no blame attached to anybody for trying anything that promises a cure.

    Promises? But it’s a false promise, it’s a false hope held out by the greedy to the desperate.

    There is blame for those who offer false hope.

    There is blame for those who cooperate with feeding false hope: the credulous journalists, the credulous fund-raisers.

    And yes, there is some blame for the victims of the clinic. While they might be desperate, they still have a responsibility to say “no, this is rubbish, don’t put me through the extra pain, don’t raise funds, get me the best treatment from reputable doctors, I don’t want to be part of a scam.”

    Potential victims do have a duty to avoid becoming actual victims. Of course, that duty is lightened by the pressure they are under, but nevertheless, patients have responsibilities.

  13. #13 Sauceress
    March 7, 2012

    To Isabelle Tan’s family and friends, I send my heartfelt sympathies for your loss.

    To Burzynski & Co: You are lower than the lowest scum on this earth.

  14. #14 Composer99
    March 7, 2012

    Dan39, your conspiracy-addled rant fails from the very first sentence:

    What exactly is wrong with saying that had those patients flew to Houston any sooner, they would still be living if it’s true. [Emphasis mine.]

    See, there’s your problem right there.

  15. #15 Greg Fish
    March 7, 2012

    With 7,000,000,000+ human beings roaming earth right now, you think “curing cancer” is what global elites want to hear? Keep this in mind: “A patient cured is a customer lost.”

    So the nefarious global elites are going to have dead people buy their medical treatments? Once you’re dead, you’re not a customer and if you’re not cured, you’re going to die sooner than you otherwise would. Considering that cancer comes in more than a hundred different varieties, a cure for one form doesn’t mean that a patient can no longer develop any other cancer.

    If I were one of the global masterminds of the NWO, I would want people to live as long as possible so I can sell them more stuff and amass more wealth with which to control politicians, fund wars, etc. Ruling over a cemetery is hardly a profitable endeavor.

  16. #16 prn
    March 7, 2012

    Well, for the “sporting class” with multforme glioma, how about an alternative alternative, like this? meet
    Ben Williams, Virtual Trials.

  17. #17 Todd W.
    March 7, 2012

    These are the testimonials you don’t hear. Thank you, Orac, for giving Isabelle Tan a voice. My deepest sympathies go out to her family.

  18. #18 David
    March 7, 2012

    “He’s simply an honest physician trying to change the world of medicine for a healthier future.”

    Here are two aspects of ethics for you to consider:
    - First, you shouldn’t promise, or imply, that your treatment works BEFORE you have the results of definitive trials. This is the ethical principal of “equipoise.”
    - Second, you shouldn’t charge for providing experimental treatment.

    I work for a pharmaceutical company, and have supervised many trials (none in the cancer area, and I have no conflict-of-interest). I’ve never violated either of those ethical rules. When patients have to travel to participate in a trial, my company reimburses reasonable & documented travel expenses. But we don’t charge patients for access, and we don’t pay people to participate.

    If Dr B had any meaningful evidence that his product has any chance of being effective, he would be able to obtain either grant funding from NIH or venture capital funding to sponsor a properly financed trial. The company I work for, as an example, is actively looking to buy rights to emerging cancer therapies from small research labs.

    Then he’d be able to provide trial access without charging patients, and without violating the ethical principal of equipoise. But that path implies convincing experts who are well-informed. Instead, he takes the path of convincing people who are vulnerable, desperate, and selectively informed.

    That’s not remotely close to honest.

  19. #19 Patricia
    March 7, 2012

    D39: I’ll tell you what’s wrong with saying that these people might have lived if they’d started treatment sooner.
    It’s utterly groundless speculation.
    And, disgustingly, it tells the family and friends of the deceased that their loved one is dead because they didn’t raise the money for Burzynski’s huge fees fast enough.
    Don’t you think they’ve suffered enough without people like you trying to give them all the guilt for the failure of the “treatment”?

  20. #20 Denice Walter
    March 7, 2012

    Totally OT-

    According to the Independent, Walker-Smith’s appeal to the High Court has been successful: the strike-off was “unlawful”.
    AoA is crowing but a detail escapes them, Walker-Smith maintained that the medical procedures were ” clinically indicated for purposes of diagnosis and treatment, but not for a research project”.

  21. #21 Dianne
    March 7, 2012

    Here’s what would really happen if someone had the cure for cancer. (Cancer isn’t a single disease so there will never be a single cure and this is all fantasy, but just for the argument, please ignore that bit for now.)

    Drug company finds that compound X cures cancer in cell lines and mouse models. They say, “We’ve got a cure for the second most common disease known to humanity? Our stock is going to be astronomical!”

    They find a researcher or several. Researcher/s look at the preliminary data and say, “If this works, we’re getting a Nobel and a place in history.” They get the phase I trials going in record time.

    Normally, phase I’s are all about toxicity and aren’t too exciting with respect to results. But this is THE cure. In the phase I it produces complete resolution of diverse and deadly cancers including (say) glioblastoma, pancreatic cancer, renal cell, and melanoma. The university where the trial was held holds the mother of all press conferences to talk about results. Everyone is very excited. The phase II trial fills in about 10 minutes. Results are equally good and the grandmother of all press conferences is held.

    The drug company takes these results to the FDA and asks for approval. The FDA-which can get off its butt and work quickly when motivated (see imatinib)-approves in record time.

    Drug X, marketed as Cancerbegone, comes out on the market and quickly dominates. The manufacturers live happily ever after on the proceeds. People start to think of cancer as no big deal and stop avoiding things that can cause cancer and get even more cancers. Tobacco companies rejoice. (Smoking’s still a bad idea-arterial vascular disease hasn’t been fixed in this fantasy.) Cancerbegone remains a best seller into the 22nd century.

    So, if antineoplastins are “Cancerbegone”, why hasn’t this happened? Burzynski should have drug companies and universities wooing him if he really has an answer. Why wouldn’t he? He would have the means to make the companies rich and the universities famous. Not to mention cure a horrible disease. Yet, none of this happens. Almost as if his drug doesn’t work…

  22. #22 Marry Me, Mindy
    March 7, 2012

    Cancerbegone remains a best seller into the 22nd century.

    Until anti-cancerbegonists start making waves, and accusing the companies of conspiracy. Cancer isn’t even a problem, it is just the pharma companies pushing pills on everyone. Cancer can be cured just fine by using natural methods. Look back in history. Back in the early 21st century, there were folks like Burzynski who was curing cancer WITHOUT drugs, and the government shut him up.

  23. #23 Beamup
    March 7, 2012

    I think it’s also relevant to mention that, even if one were to assume Burzynski’s treatments are as good as claimed, he’s STILL an irresponsible unethical con man – perhaps even more so. If that were the case, he’d be killing people in droves by refusing to actually do the science and publish the results so that everyone could benefit from such miraculous treatments. AND still defrauding patients by selling them meds at many times the price real pharmacies charge.

  24. #24 Les Lane
    March 7, 2012

    Major problem is he has no animal model which makes testing extremely inefficient. My hopefully useful Burzynski link collection

  25. #25 Lancelot Gobbo
    March 7, 2012

    Cancerbegone? Doesn’t that cause autism? I’m not anti-cancerbegone, by the way, just pro-safe-cancerbegone…. :)
    Believe me, any really effective treatment will become the victim of its own success as the disease it cures or prevents is no longer considered a problem.

  26. #26 Bronze Dog
    March 7, 2012

    That’s exactly how I imagine it turning out: If we had a cure for every cancer, after a generation or two, we’d come across hordes of alties who claim that cancer is a minor disease and builds character.

  27. #27 Tzi
    March 7, 2012

    “A patient cured is a customer lost.”

    So is a patient dead, so this quote isn’t exactly enlightening here.

  28. #28 Old Rockin' Dave
    March 7, 2012

    I love the way people accuse “Big Pharma” of suppressing one or another “miracle cure.”
    If I came up with a promising cure for all or most cancers, here is what the pharmaceutical companies would be doing:
    1)Competing to fund my research in order to secure the patent.
    2)Associating themselves with me to burnish their image, maybe in ads, maybe by putting me on the board of directors, certainly by sponsoring my appearances at major conferences around the world.
    3)Buying a big, beautiful, fully-equipped lab, or even my own institute, with my name on it, in the hope that I could do it again for another major disease and share the patent with them.
    4)Feature their role in the cure in order to sell more drugs for other diseases to more patients.
    I used to be a physician assistant and worked with some of the best-known oncologists in the world (Orac, I will be happy to confirm this to you). They are not suppressing anything. Many doctors choose oncology because they have lost someone close to them to cancer. Most genuinely care for their patients and most would also love to bask in the glory of discovering a cure for many cancers. Oncologists get cancer; they don’t do much better than anyone else – do they sign a pledge to forgo the sekrit sooperkure? I saw among our patients the siblings and parents of some of our attending physicians. Does anyone really think that if there were some suppressed panacea they wouldn’t bend heaven and earth to use it?
    Anyone who believes this suppression nonsense is a fool who has no idea of how the real world works.

  29. #29 Prometheus
    March 7, 2012

    Sophia8 (#3):

    “Cancer is a horrible disease and there should be no blame attached to anybody for trying anything that promises a cure.”

    Absolutely! However, what should we do about people who make promises of a cure with no data showing that it works (or, worse yet, that data already shows doesn’t work)?

    I have nothing but sympathy for people desperate to save their life or the life of someone they love, but what kind of low-life pond scum sells desperate people chemotherapy drugs at well over the market price and tells them – with no supporting data – that it will “cure” their incurable cancer? (apparently, using the same drugs at the market price will not cure the same cancer)

    D39 (#6):

    “The primary agenda is to reduce the global population. With 7,000,000,000+ human beings roaming earth right now, you think “curing cancer” is what global elites want to hear?”

    Another point of failure in this “argument” (paranoid delusion?) is that the “global elites”, since they tend to live longer than the average person on the planet, are more likely to get cancer than the vast numbers of poor people (who are more likely to die of disease, starvation or war before they can develop cancer). That makes it unlikely that the “global elites” would be suppressing “cancer cures”.

    If the goal is to reduce planetary population, the most efficient approach would be to oppose and suppress those medical therapies that provide the greatest number of person-years of life saved. Chief among those would be – of course – vaccines (right after clean water and sufficient food). And who is it that is currently opposing vaccines…?

    Who knew that “Dr. Jay” and the rest of the anti-vaccination crackpots were part of the “global elite”?

    Prometheus

  30. #30 MikeMa
    March 7, 2012

    The “patient cured, customer lost” quip is entertaining in a heartless money grubbing bastard perspective. Dr B seems to understand both ends of this. Either cured or dead, there will be no more income so that may be the prime motivation for charging the huge fees.

    Like a bookie, Burzynski gets paid whether the customer wins or loses. I envision the movie Trading Places when Valentine (Eddie Murphy) is introduced to the Duke’s business and says, “you two a couple of bookies, right?”.

    Medicine in general might be viewed that way but Burzynski’s fee structure and the never ending phase II, never starting phase III is pushing credulity and sense. Here’s hoping Texas shuts him down.

  31. #31 Bronze Dog
    March 7, 2012

    You know, there’s one thing about the cancer cure suppression conspiracy nuttery that occurs to me: I think part of it it might be premised on the idea that someone, somewhere has The Answer.

    I think some of it ties into authoritarian trends I see in alties: Trust the guru because he’s perfect, which means he’s got the answer to everything. It provides the illusion of control if you can believe in a god-man. Naturally, it’s part of conspiracy thinking in general: If it happened, that means the omnipotent Illuminati made it happen, according to their inscrutable plan, and thus there’s someone out there who knows exactly why confusing event X happened.

    Another concept seems to come from people who take games like Civilization far too seriously: That if you keep spending time and resources researching something, you will find the answer, and in a predictable number of turns. Just throw a couple thousand beaker icons at it. Didn’t work? Conspiracy!

    In the real world, there are questions that no one knows the answer to, yet. We live in an uncertain, unpredictable world. We are mere mortals. The world doesn’t exist for our interests. Scientific discoveries don’t have a fixed resource price tag. These are facts that we’ve learned to accept, but many people haven’t.

  32. #32 flip
    March 7, 2012

    It’s funny that the very people who decry patents as a conflict of interest are often the same ones who complain that if a cure was found, there’d be no money to be earned. And then go on to see no problems with the millions of dollars raked in by woo merchants.

  33. #33 Danny
    March 7, 2012

    My name is Danny I see people against and for the clinic in these posts. I am a patient currently undergoing treatment at my home since right before Christmas. I have 3 children a 6y/o an 14 and a 17 y/o. So when I was told 2 times that there was nothing that could be done I had 6-12 months left. I went to my local oncologist at kennestone hospital and I seeked a second opinion from Oklahomas cancer center of America where they told my wife and my mom that they need to figure out when they need to just let me go. WHAT!!! To go back I am 34 years old I own a business and I coach 2 different baseball teams and I love that more than anything in the world to just give time to the boys and help them get better and have fun. I live in Atlanta ga. So back to the reality. I saw and met braylinn and her mother father and grandmother. They were in training with us for around 6 days then they left a day earlier than us. Anyone who is saying burzynski had anything to do with her death is a moron
     She was already in a bad stage as is everyone who goes to the clinic. Her father told me that her tumor was growing unbeleivably fast and not even burzynski could guarantee but he said he may be able to help her. I applaud her parents for fighting to the end as will I. My heart goes out to all of you. 
    I met a few patients there I also trained with Hanna and Pete from the UK. Hanna had an astrocytoma which is the same cancer and tumor I have. I believe she was a stage 3 or 4 she was in good shape by the time she got there. She was the same age as I am and Pete recorded everything in traing for his own documentary. Hanna’s tumor has shrunk 21% and she has another MRI coming soon. Look for yourself at helpforhanna.com. They heard about the clinic from another patient in the UK Laura which also has a bad tumor and hers has shrunk 57% since August. And I have had 2 MRI done one in January and one in February. January’s results showed a 36% decrease and February’s showed another 21% so a total of 57% since I started this treatment. It makes me upset when a lot of people call testimonials useless but I disagree 100%. I called 3 prior patients before I started teatment and they were all in my situation at 1 point. Another thing when you first go to the clinic for a consultation with dr burzynski he tells u straight up with his drs. We cannot guarantee this treatment will work for u but we will make sure we do anything in our power to try to kill it. ( not give u an extra miserable few months which is what everyone else says) he tells u cancer is a deadly desiese  and no one can kill it every time.  And as far as its cost it’s not as bad as everyone says its expensive but my radiation and chemo ( which has to fail before u can even get in the clinic) for 3 months was almost 200,000$. A year of his treatment is less then 100k. Only problem is insurance. As far as the treatment process it sucks but it’s working. I have a bag where the machine and my iv bags constantly infuse the IV every 2 hours. So 12 hours out of 24 even sleeping. And u have to prep all the bags b4 each treatment. Thank god for my wife the best thing that ever happened to me she has helped every step of the way. I am in good shape finally and able to attend both my boys baseball games. I have No real symptoms except for having to pee every 20 mins. I’ve had a few seizures here and there but this medicine dilutes the seizure meds. I believe the clinic has found the magic dose of seizure meds because I havnt had one in about 3 weeks. Dr b told me in the beginning that if the tumor started to shrink to fast it would cause seizures and headaches. Both of those have pretty much gone away finally and I really do feel the best I have felt in a long time. As for all of you that just put down burzynski and his clinic it’s a disgrace to see some of the things you say against him. Especially when I know 4 people it’s working for right now.  I will keep all of u updates. If you have any questions let me know. 

  34. #34 Just Sayin'
    March 7, 2012

    Cancerbegone

    Isn’t that a lake in Minnesota (on the edge of the prairie)?

  35. #35 Just Sayin'
    March 7, 2012

    someone, somewhere has The Answer

    No one has The Answer. But Oprah and Dr. Oz have The Secret. Must be something to do with having a name that starts with “O”. Hmmm…..does that mean Orac has the secret too?

  36. #36 Danny
    March 7, 2012

    My name is Danny I see people against and for the clinic in these posts. I am a patient currently undergoing treatment at my home since right before Christmas. I have 3 children a 6y/o an 14 and a 17 y/o. So when I was told 2 times that there was nothing that could be done I had 6-12 months left. I went to my local oncologist at kennestone hospital and I seeked a second opinion from Oklahomas cancer center of America where they told my wife and my mom that they need to figure out when they need to just let me go. WHAT!!! To go back I am 34 years old I own a business and I coach 2 different baseball teams and I love that more than anything in the world to just give time to the boys and help them get better and have fun. I live in Atlanta ga. So back to the reality. I saw and met braylinn and her mother father and grandmother. They were in training with us for around 6 days then they left a day earlier than us. Anyone who is saying burzynski had anything to do with her death is a moron
     She was already in a bad stage as is everyone who goes to the clinic. Her father told me that her tumor was growing unbeleivably fast and not even burzynski could guarantee but he said he may be able to help her. I applaud her parents for fighting to the end as will I. My heart goes out to all of you. 
    I met a few patients there I also trained with Hanna and Pete from the UK. Hanna had an astrocytoma which is the same cancer and tumor I have. I believe she was a stage 3 or 4 she was in good shape by the time she got there. She was the same age as I am and Pete recorded everything in traing for his own documentary. Hanna’s tumor has shrunk 21% and she has another MRI coming soon. Look for yourself at helpforhanna.com. They heard about the clinic from another patient in the UK Laura which also has a bad tumor and hers has shrunk 57% since August. And I have had 2 MRI done one in January and one in February. January’s results showed a 36% decrease and February’s showed another 21% so a total of 57% since I started this treatment. It makes me upset when a lot of people call testimonials useless but I disagree 100%. I called 3 prior patients before I started teatment and they were all in my situation at 1 point. Another thing when you first go to the clinic for a consultation with dr burzynski he tells u straight up with his drs. We cannot guarantee this treatment will work for u but we will make sure we do anything in our power to try to kill it. ( not give u an extra miserable few months which is what everyone else says) he tells u cancer is a deadly desiese  and no one can kill it every time.  And as far as its cost it’s not as bad as everyone says its expensive but my radiation and chemo ( which has to fail before u can even get in the clinic) for 3 months was almost 200,000$. A year of his treatment is less then 100k. Only problem is insurance. As far as the treatment process it sucks but it’s working. I have a bag where the machine and my iv bags constantly infuse the IV every 2 hours. So 12 hours out of 24 even sleeping. And u have to prep all the bags b4 each treatment. Thank god for my wife the best thing that ever happened to me she has helped every step of the way. I am in good shape finally and able to attend both my boys baseball games. I have No real symptoms except for having to pee every 20 mins. I’ve had a few seizures here and there but this medicine dilutes the seizure meds. I believe the clinic has found the magic dose of seizure meds because I havnt had one in about 3 weeks. Dr b told me in the beginning that if the tumor started to shrink to fast it would cause seizures and headaches. Both of those have pretty much gone away finally and I really do feel the best I have felt in a long time. As for all of you that just put down burzynski and his clinic it’s a disgrace to see some of the things you say against him. Especially when I know 4 people it’s working for right now.  I will keep all of u updates. If you have any questions let me know. 

  37. #37 Calli Arcale
    March 7, 2012

    Just Sayin’,

    Yeah, I think it’s just a bit up nort from Lake Woebegone. It’s a kinda different place from there, ya know. The men are all handsome, the women are all strong, but the kids are all *below* average.

    Uff da.
    ;-)

    (If you are ever up this way, in or near St Paul, MN, see if you can get tickets to a Prairie Home Companion. They produce it from the Fitzgerald Theater in St Paul, most of the time, and it’s a real hoot to watch it live.)

  38. #38 Dianne
    March 7, 2012

    No one has The Answer.

    Nonsense. Deep Thought has the answer. It’s 42. The question now…

  39. #39 Danny
    March 7, 2012

    My name is Danny I see people against and for the clinic in these posts. I am a patient currently undergoing treatment at my home since right before Christmas. I have 3 children a 6y/o an 14 and a 17 y/o. So when I was told 2 times that there was nothing that could be done I had 6-12 months left. I went to my local oncologist at kennestone hospital and I seeked a second opinion from Oklahomas cancer center of America where they told my wife and my mom that they need to figure out when they need to just let me go. WHAT!!! To go back I am 34 years old I own a business and I coach 2 different baseball teams and I love that more than anything in the world to just give time to the boys and help them get better and have fun. I live in Atlanta ga. So back to the reality. I saw and met braylinn and her mother father and grandmother. They were in training with us for around 6 days then they left a day earlier than us. Anyone who is saying burzynski had anything to do with her death is a moron
     She was already in a bad stage as is everyone who goes to the clinic. Her father told me that her tumor was growing unbeleivably fast and not even burzynski could guarantee but he said he may be able to help her. I applaud her parents for fighting to the end as will I. My heart goes out to all of you. 
    I met a few patients there I also trained with Hanna and Pete from the UK. Hanna had an astrocytoma which is the same cancer and tumor I have. I believe she was a stage 3 or 4 she was in good shape by the time she got there. She was the same age as I am and Pete recorded everything in traing for his own documentary. Hanna’s tumor has shrunk 21% and she has another MRI coming soon. Look for yourself at helpforhanna.com. They heard about the clinic from another patient in the UK Laura which also has a bad tumor and hers has shrunk 57% since August. And I have had 2 MRI done one in January and one in February. January’s results showed a 36% decrease and February’s showed another 21% so a total of 57% since I started this treatment. It makes me upset when a lot of people call testimonials useless but I disagree 100%. I called 3 prior patients before I started teatment and they were all in my situation at 1 point. Another thing when you first go to the clinic for a consultation with dr burzynski he tells u straight up with his drs. We cannot guarantee this treatment will work for u but we will make sure we do anything in our power to try to kill it. ( not give u an extra miserable few months which is what everyone else says) he tells u cancer is a deadly desiese  and no one can kill it every time.  And as far as its cost it’s not as bad as everyone says its expensive but my radiation and chemo ( which has to fail before u can even get in the clinic) for 3 months was almost 200,000$. A year of his treatment is less then 100k. Only problem is insurance. As far as the treatment process it sucks but it’s working. I have a bag where the machine and my iv bags constantly infuse the IV every 2 hours. So 12 hours out of 24 even sleeping. And u have to prep all the bags b4 each treatment. Thank god for my wife the best thing that ever happened to me she has helped every step of the way. I am in good shape finally and able to attend both my boys baseball games. I have No real symptoms except for having to pee every 20 mins. I’ve had a few seizures here and there but this medicine dilutes the seizure meds. I believe the clinic has found the magic dose of seizure meds because I havnt had one in about 3 weeks. Dr b told me in the beginning that if the tumor started to shrink to fast it would cause seizures and headaches. Both of those have pretty much gone away finally and I really do feel the best I have felt in a long time. As for all of you that just put down burzynski and his clinic it’s a disgrace to see some of the things you say against him. Especially when I know 4 people it’s working for right now.  I will keep all of u updates. If you have any questions let me know. 

  40. #40 HFM
    March 7, 2012

    Yes, a patient cured is a customer lost – but a patient we can’t help is a customer never had. Even if you assume we’re all evil, there’s no money to be made in hiding the cure for cancer. (If I had it, don’t you think I would be rolling around in a pile of Steve Jobs’ money right now?) There is, however, plenty of money to be made in selling false hope.

  41. #41 Dianne
    March 7, 2012

    “A patient cured is a customer lost.”

    A patient cured is a customer satisfied who will come back next time s/he has a similar problem and will recommend you to his/her friends and family members with similar problems. A patient killed is a complete loss and bad publicity.

  42. #42 Adam
    March 7, 2012

    The surest sign that Burzynski Clinic is selling snakeoil is the distinct lack of interest by drug companies. If there was any promise in the treatment then drug companies would be bidding against each other to throw wads of cash to fund the research and advance to stage 3 trials and a patentable treatment. That they’re not should say all that needs to be said. Oh and Burzynski would be up for a Nobel prize in medicine. Curiously none of this is the case.

  43. #43 Danny
    March 7, 2012

    Y won’t u post my positive side to all this. I’m a patient. I should be able to give my opinion. I’ve submitted 3 times already.

  44. #44 Danny
    March 7, 2012

    My name is Danny I see people against and for the clinic in these posts. I am a patient currently undergoing treatment at my home since right before Christmas. I have 3 children a 6y/o an 14 and a 17 y/o. So when I was told 2 times that there was nothing that could be done I had 6-12 months left. I went to my local oncologist at kennestone hospital and I seeked a second opinion from Oklahomas cancer center of America where they told my wife and my mom that they need to figure out when they need to just let me go. WHAT!!! To go back I am 34 years old I own a business and I coach 2 different baseball teams and I love that more than anything in the world to just give time to the boys and help them get better and have fun. I live in Atlanta ga. So back to the reality. I saw and met braylinn and her mother father and grandmother. They were in training with us for around 6 days then they left a day earlier than us. Anyone who is saying burzynski had anything to do with her death is a moron
     She was already in a bad stage as is everyone who goes to the clinic. Her father told me that her tumor was growing unbeleivably fast and not even burzynski could guarantee but he said he may be able to help her. I applaud her parents for fighting to the end as will I. My heart goes out to all of you. 
    I met a few patients there I also trained with Hanna and Pete from the UK. Hanna had an astrocytoma which is the same cancer and tumor I have. I believe she was a stage 3 or 4 she was in good shape by the time she got there. She was the same age as I am and Pete recorded everything in traing for his own documentary. Hanna’s tumor has shrunk 21% and she has another MRI coming soon. Look for yourself at helpforhanna.com. They heard about the clinic from another patient in the UK Laura which also has a bad tumor and hers has shrunk 57% since August. And I have had 2 MRI done one in January and one in February. January’s results showed a 36% decrease and February’s showed another 21% so a total of 57% since I started this treatment. It makes me upset when a lot of people call testimonials useless but I disagree 100%. I called 3 prior patients before I started teatment and they were all in my situation at 1 point. Another thing when you first go to the clinic for a consultation with dr burzynski he tells u straight up with his drs. We cannot guarantee this treatment will work for u but we will make sure we do anything in our power to try to kill it. ( not give u an extra miserable few months which is what everyone else says) he tells u cancer is a deadly desiese  and no one can kill it every time.  And as far as its cost it’s not as bad as everyone says its expensive but my radiation and chemo ( which has to fail before u can even get in the clinic) for 3 months was almost 200,000$. A year of his treatment is less then 100k. Only problem is insurance. As far as the treatment process it sucks but it’s working. I have a bag where the machine and my iv bags constantly infuse the IV every 2 hours. So 12 hours out of 24 even sleeping. And u have to prep all the bags b4 each treatment. Thank god for my wife the best thing that ever happened to me she has helped every step of the way. I am in good shape finally and able to attend both my boys baseball games. I have No real symptoms except for having to pee every 20 mins. I’ve had a few seizures here and there but this medicine dilutes the seizure meds. I believe the clinic has found the magic dose of seizure meds because I havnt had one in about 3 weeks. Dr b told me in the beginning that if the tumor started to shrink to fast it would cause seizures and headaches. Both of those have pretty much gone away finally and I really do feel the best I have felt in a long time. As for all of you that just put down burzynski and his clinic it’s a disgrace to see some of the things you say against him. Especially when I know 4 people it’s working for right now.  I will keep all of u updates. If you have any questions let me know. 

  45. #45 Dangerous Bacon
    March 7, 2012

    Dr. Burzynski doesn’t need a Nobel Prize. He’s already a Hereditary Count according to his CV.

    Amazing that with all Burzynski’s “clinical trials” and “best case series”, nothing has stood up to outside scrutiny. We’re supposed to rely on testimonials and ignore the dead people.

    I’m still waiting for all the crack conspiracy theorists like D39 to explain where the “global elites” and all their minions go to be successfully treated for cancer (or have it prevented entirely). You’d think that if there’s a Secret Tijuana Global Elites/Minions Clinic doling out antineoplastons and essiac tea for the privileged folks, the conspiracy theorists would have discovered it by now and published the story on their websites.

    Still waiting…

  46. #46 Danny
    March 7, 2012

    U will see my long post later once they approve it I guess but the reason I’m posting is I met raylinn
    At the clinic when I was in training. God bless there family we were with them for about 6 days and no one should talk about anything until they know the condition she was in when she got to the clinic. It’s unfortunate but it’s a deadly cancer and takes a lot more than it gives. I know 3 people including myself that are improving every month. When my post hits u will see there info as well. My brain tumor has shrunk 57% since december.

  47. #47 meg
    March 7, 2012

    @Sophia8

    I really really hope that I’m missing something in what you’ve said – you don’t want us to hold those you knowingly give false hope to account?

    They promise a cure, charge thousands of dollars, and cannot deliver. I’d really like there to be a special level of hell reserved for people like that.

  48. #48 Sauceress
    March 7, 2012

    Y won’t u post my positive side to all this.

    Calm down Danny, your post has probably got caught up in the spam filter. It happens to all of us from time to time.

    Interesting how you automatically intimate censorship.

    I’m a patient.

    From the Burzynski Patient Group? The one which states it’s

    “purpose is to collect and disseminate testimonials from some of the past and present patients of Dr. Burzynski whose cancers were successfully treated using his advanced cancer treatment.”

    The group Marc Stephens previously managed? The Marc Stephens who claimed to be hired by the Burzynski Clinic to threaten science bloggers who looked a little too closely at Burzynski’s operations and weren’t impressed? The Marc Stephens who tried to censor that same criticism with bullying and quasi-legal threats?

    btw I’d love to hear of any genuine clinical trials you can think of where researchers enlist participants to troll the web extolling the virtues of their research.

    p.s. Unlike those with something to hide, Orac doesn’t censor critics.

  49. #49 Danny
    March 7, 2012

    You guys are funny. No matter what someone says you always have to badger them and try to get everyone else reading to think we work for the dr. And for ur info I’m a patient was for whoever reads the posts and approves them not u. I am a real patient and there are other people I met there that there condition is improving. Y don’t u take time off work or go to the clinic and meet people for urself and follow there progress. Nothing else will ever even come close to convincing u that this just may be real.

  50. #50 prn
    March 7, 2012

    On brain cancers, a cost approach to criticism here looks hypocritical. Everyone around (pharma, medical oncologists) seems to be selling something really cheap for a whole lot, like 100x or more. 5FU and LV come to mind.

    Politics and emotionalism aside, like here on overcharges and particular distribution structures, his loss of support will be failure to offer a differential *hope* results wise to experimental alternative approaches, like Ben Williams, or even new conventional treatments. People won’t rally at some point.

    Orac’s strongest point would be that the phenylbutyrate is an inefficent HDAC inhibitor treatment (it is not the 1970s anymore) against others and a one trick pony, when the world (alternative and orthodox) is slowly graduating to more multimodal, multicomponent treatments (like Ben Williams, linked in #16 above) with improved results. The carnival show aside, Burzynski is struggling to not appear obsolete as an “alternative” to the unwashed masses, and losing ground even on brain cancers.

  51. #51 herr doktor bimler
    March 7, 2012

    dr burzynski he tells u straight up with his drs. We cannot guarantee this treatment will work for u but we will make sure we do anything in our power to try to kill it.

    Are you suggesting that mainstream oncologists will not do everything in their power to treat cancer? You lost me at that point.

  52. #52 herr doktor bimler
    March 7, 2012

    The group Marc Stephens previously managed? The Marc Stephens who claimed to be hired by the Burzynski Clinic to threaten science bloggers who looked a little too closely at Burzynski’s operations and weren’t impressed? The Marc Stephens who tried to censor that same criticism with bullying and quasi-legal threats?

    I see that some Wikipedia contributor has subtly amended a section in the Wiki entry on Burzynski covering the Marc Stephens debacle. Earlier it noted a press release from the Burzynski Clinic
    confirming that the Clinic had hired Stephens “to provide web optimization services and to attempt to stop the dissemination of false and inaccurate information concerning Dr. Burzynski and the Clinic”
    There is now an explanatory hyperlink from “web optimization”, expanding this to “search engine optimization”. In other words, Stephens was running the internet marketing strategy for Burzynski, including the right keywords and backlinks in his websites and planting links to them in other sites to maximise their ranking when anyone starts Googling for cancer treatments. To lead as many desperate families there as possible.

    This is totally how real non-charlatan oncologists behave.

  53. #53 Sauceress
    March 7, 2012

    #45 Dangerous Bacon

    Dr. Burzynski doesn’t need a Nobel Prize.

    The Dr. Burzynski fan club beg to differ. See the Facebook page titled “Nobel Prize for Dr. Burzynski”. Interesting to see the topic of most comments there consist purely of antivaxx whining and the usual peddling of antivaxx ideology.

    ~~~
    #46 @Danny

    the reason I’m posting is I met raylinn At the clinic when I was in training.

    Who is raylinn? What do you mean by “in training”? Training to self administer treatment?
    ~~~
    #49 Danny

    I am a real patient and there are other people I met there that there condition is improving.

    Were the improvements in the conditions of these patients due to Dr. Burzynski’s antineoplastons or to the mainstream chemotherapy drugs he also administers as part of his treatment. How can one tell?

  54. #54 Zach Miller
    March 7, 2012

    No, herr doktor, I think Danny is trying to say that Dr. Burzynski is just like (as good as) other “mainstream” doctors. I also can’t figure out why Danny posted his lengthy rant four times. Trying to brute-force past the moderation, perhaps?

    It’s not necessarily Danny, this is a personal problem of mine. I have a really hard time reading the ethos of somebody who can’t (1) spell; (2) use proper sentence structure; (3) use the “enter” key; and (4) uses text-messaging shorthand (Y, U, drs., etc.) in a more formal setting. Again, not really a knock on Danny, I’m just using him as an example. It’s the English major in me.

  55. #55 Chemmomo
    March 7, 2012

    Danny,

    Y don’t u take time off work or go to the clinic and meet people for urself and follow there progress. Nothing else will ever even come close to convincing u that this just may be real.

    Why should we take time off work? As a doctor running clinical trials, it’s part of Burzynski’s job to monitor his patients’ progress and publish the results. Why are you asking us to his job? Shouldn’t you be asking him do his own job?

  56. #56 Todd W.
    March 7, 2012

    @Danny

    I’m curious about a couple questions that I’m hoping you could answer, since you state you were (or are) a patient of Dr. Burzynski’s.

    1) Did you receive as part of your treatment antineoplastons?
    2) Were you enrolled in one of Dr. Burzynski’s clinical trials?
    3) If the answer to #2 is yes, did you sign an informed consent form and were you provided with a copy for your own records as required by law?
    4) If the answer to #3 is yes, would you be willing to e-mail me a scanned copy of the consent form (with any personal info blacked out, of course)?

    Thanks!

  57. #57 herr doktor bimler
    March 7, 2012

    While you are visiting, Danny, can you describe how you came to read this website? Was it a Google search? A Google Alert?

    The reason I ask is that bloggers like to have people reading their opinions and insights (even when the readers disagree, like yourself), and I imagine Orac would be grateful for feedback of this kind.

  58. #58 Sauceress
    March 7, 2012

    #53 Zach Miller

    I have a really hard time reading the ethos of somebody who can’t(1) spell; (2) use proper sentence structure; (3) use the “enter” key; and (4) uses text-messaging shorthand (Y, U, drs., etc.) in a more formal setting.

    What is interesting is virtually every testimonial to the success of Burzynski’s treatment posted at RI features those same attributes. One has to wonder if it’s the antineoplastons that are responsible for the condition.

    As to gramma, well mine is a shaky little old lady but she means well. It’s a little bit mean to pick on grammas.
    kthnxby :p

  59. #59 herr doktor bimler
    March 7, 2012

    Nothing else will ever even come close to convincing u that this just may be real.

    You know what would convince me? Publication of the 5-year survival statistics from one of Burzynski’s clinical trials.
    He has 60 trials running, some have been going for 30 years… he must have some convincing figures by now…

  60. #60 prn
    March 7, 2012

    Are you suggesting that mainstream oncologists will not do everything in their power to treat cancer?
    Failure to treat cancer with the most logical, most promising treatments would correspond with my experience with med oncs. It almost seems like dealing with “papal infallability” with doctors who obviously don’t read their own literature.

  61. #61 Robert
    March 7, 2012

    Danny,

    Who is reading your MRIs and telling you about decreases in tumor size?

  62. #62 Antaeus Feldspar
    March 7, 2012

    @Sophia8

    I really really hope that I’m missing something in what you’ve said – you don’t want us to hold those you knowingly give false hope to account?

    They promise a cure, charge thousands of dollars, and cannot deliver. I’d really like there to be a special level of hell reserved for people like that.

    You were wise to phrase things as you did, meg. Sophia wasn’t talking about those who are selling false hope but those who are buying it. She talked about “those who are trying everything” which by itself is ambiguous, but in context it’s clearly those who are trying everything because it’s they, or their loved ones, who are suffering from the cancer.

  63. #63 Sauceress
    March 7, 2012

    #44

    And as far as its cost it’s not as bad as everyone says its expensive but my radiation and chemo ( which has to fail before u can even get in the clinic) for 3 months was almost 200,000$.

    I wonder what Danny would say to the following account of Burzynski’s pricing practices?

    Along with the long list of other meds that were supposed to work in conjunction with each other, the Burzynski Clinic gave my husband standard chemotherapy medications. We were never told that two of the medications were conventional chemo medications. We discovered from our local pharmacy that one medication the Burzynski Clinic had charged us over $2300.00 for could have been purchased from the pharmacy for around $170.00.

    Only testimonials that demonstrate support for Burzynski are credible?

  64. #64 Craig Thomas
    March 7, 2012

    Danny, how much money has Burzynski received from you in relation to his unproven experimental treatments?

  65. #65 Denice Walter
    March 7, 2012

    I learned a trick when counselling people that I also use when my friends or relatives discuss their problems with me ( or use for myself): after listening to their accounts – often highly descriptive and emotional- I’ll ask them to pare it down to its essential elements- discard the adjectives and adverbs, descriptive phrases, opinions, beliefs, et al but *stick* to what actually occured, what you *have*, what could be demonstrated if you had had a video running. Leave out what you feel about it *for now*. What are the bare essentials of the situation? How does it boil down? Sometimes this can lead to insight that had formerly been clouded by detail noise.

    Dr B has been giving treatments for over 30 years without ever showing data. He charges for clinical trials, has his own pharmacy and uses chemotherapeutic agents in innovative ways- without data. He maintains a PR machine and relies on testimonials; he has been investigated by the state.

  66. #66 Danny
    March 7, 2012

    Both my oncologist and the burzynski clinic. I was lucky enough to have my oncologist follow me for this trial. Every time I walk out of there all I hear is congratulations from the drs and the nurses. And as far as him charging all that money for the meds from his pharmacy I couldn’t tell u anything about that because im on antineoplastons IV not the oral meds which is the gene therapy.

  67. #67 Danny
    March 7, 2012

    I am sorry my spelling is not good enough for you. Here you go this time I will make it right just for you. Maybe it’s because i am using my iPhone to type all of these posts. Is that better for you. Lol

  68. #68 Danny
    March 7, 2012

    And the reason I posted 4 times is because it was an accident. I couldn’t get the post to appear so I submitted it too many times and couldn’t erase any of them. Sorry for that. That sucked. I agree.

  69. #69 Chris
    March 7, 2012

    Danny, the spam software here will put very long posts into moderation. It happens to all of us.

  70. #70 Danny
    March 7, 2012

    Yes I administer all of my own medicine at home. I have to prepare every treatment every time every day. And what I would say sauceress is that’s with insurance coverage. That’s why it was 170$ instead of 1700 or whatever. My chemotherapy pills were 300$ each without insurance. Same difference. Look it up it was called temodar. @ Craig. I wont even answer that question because of your condescending remark. (Unproven treatment) I had the answer typed out for you but decided to say none of your damn business. It’s been proven to me. You know I don’t usually join these sites but the way I found this one is the last few days all I read about when I search burzynski clinic is about he’s a scam, a quack, and the fact that people are dying on his treatment. I know his treatment is working for me and a few others and I really don’t agree with a lot of your statements about this clinic. If someone really needs help and they have nothing else to turn to if they read your thoughts they won’t even consider it which I think is wrong. When you are told there’s nothing left to do for you I really hope you wouldn’t just give up if there are ANY possibilities to help. I really hope you never are faced with that decision like I was. I will never give up. All I can tell you is I am improving, nearly all my symptoms are gone and for the first time in months I just got back from coaching my kids baseball team. You believe what you want.

  71. #71 Militant Agnostic
    March 8, 2012

    Danny

    You believe what you want.

    You see Danny, we are skeptics. We can’t believe what we want, we can only believe what the evidence shows us. If I could believe what I want, I would believe that the CO2 from burning fossil fuels isn’t causing a dangerous warming of the earth’s climate. (I am self employed in the oil & gas industry.) If I could believe what I want, I would believe that taking supplements and eating organic food will prevent me from developing the dementia that runs in my family. If I could believe what I want I would believe the Prime Minister of Canada is an honest man who makes decisions based on the best available evidence and in the interests of the 99% rather than the 1%.

    Craig Thomas called Burzynski’s treatments unproven because he has not presented any evidence in the one arena where it can be examined properly, the peer reviewed scientific literature. In other words Burzynski has made no attempt to prove that his treatment works. I wonder why?

    By the way, I have been a regular reader of this blog and I have noticed a lot of new names (including Craig Thomas) posting comments against Burzynski. It would appear that his reputation is such that it brings many lurkers out of the woodwork, perhaps because they can not remain silent in the face of such vileness.

  72. #72 Militant Agnostic
    March 8, 2012

    Dangerous Bacon @45

    I’m still waiting for all the crack conspiracy theorists like D39 to explain where the “global elites” and all their minions go to be successfully treated for cancer (or have it prevented entirely).

    Has it not occurred to you that shape shifting lizards just don’t get cancer.

    Krebozien @11

    I can only conclude that the “Global Elite” are bumbling incompetents, whose best efforts to reduce global population by killing us all have failed.

    Well, they are only lizards after all. What do you expect? Things would be different if shape shifting crocodilians were running the show.

  73. #73 kruuth
    March 8, 2012

    Well Danny, if you’re not going to be forthcoming with your MRIs, how about you give us more information, when exactly did your start your treatment, who diagnosed you, who was treating you, how long is your regimen for? Since you’ve shared so much with us that shouldn’t be a tall order. Was the local media notified of this amazing cure you received?

  74. #74 David N. Brown
    March 8, 2012

    With all the cases of people openly fundraising for Burzynski “treatments”, I’ve wondered if it isn’t a sign of Burzynski and however many sycophants and mercenaries he has surrounded himself with being too successful (not to mention EXPENSIVE) for their own good: In the very act of approaching the public and the press, they invite attention to Burzynski that might not be favorable. And at the other end, one can see the double backfire, if/when a high-profile patient dies.

  75. #75 meg
    March 8, 2012

    @Antaeus # 62 – I’ll admit, I actually didn’t think of it that way – you are right, she’s not commenting on the sellers, but the buyers. And having lost my father to cancer, I get wanting to do, try anything. . .

    But I maintain, those that sell it, are scum.

  76. #76 meg
    March 8, 2012

    Danny,

    I honestly believe that all of us here want your cancer to be cured. Please, do not doubt that for one moment. Cancer is such a prolific disease that I am sure I am far from the only one here who has lost someone to it.

    But you are paying for these treatments, yes?

    I’ve been part of a couple of drug trials myself now. One was for the Red Cross, no money ever changed hands. The other, yes for a private drug company, and I was paid for my time and ‘possible inconvenience’ (not that there was any).

    You probably won’t believe me, but I fear he is taking advantage of you, and your family. I hope, for your children, your cancer does go into remission.

    But cancer is so prevalent, that any effective cancer treatment will sell, that there is no need for ‘hiding the cure’ – any company that can secure that patent will make a mint. There will be no need to charge for trials.

  77. #77 Todd W.
    March 8, 2012

    Danny,

    Since you have stated that you are taking antineoplastons, I assume that you are therefore part of one of Burzynski’s clinical trials. Would you be willing to send me a copy of the consent form you signed to participate in the trial? You can email me at todd at harpocratesspeaks dot com.

  78. #78 stewartt1982
    March 8, 2012

    @70 – Danny

    It’s been proven to me. You know I don’t usually join these sites but the way I found this one is the last few days all I read about when I search burzynski clinic is about he’s a scam, a quack, and the fact that people are dying on his treatment. I know his treatment is working for me and a few others and I really don’t agree with a lot of your statements about this clinic.

    I believe you when you say that you “believe” that Burzynski’s treatment is working for you, but it didn’t work for Ms. Tan (and the others who have died). You should understand that testimonials are not evidence … there are many treatments that people claim will cure disease, prayer and homoeopathy for instance, but they need to be backed up by facts (which these two are not).

    Burzynski has been treating people for many years, where the patient pays for access to a almost perpetual phase II trial. This is rather unethical, if his phase II trials show effective treatment he should move onto a phase III trial (I know, I know there is one open, but he doesn’t appear to have anyone enrolled in it). One needs to know, if a treatment works, if it is more effective than standard therapies, what types of cancer is it effective in etc. Burzynski provides none of this, hence I and other will remain skeptical of his treatments.

    Saying “Believe me, it works” is not enough.

    Danny, I don’t know what drugs Burzynski prescribes you, but Ucyclyd Pharma sells 250 500mg Sodium Phenylbutyrate pills for $1461.13 and 250 grams of powder for $2922.25. These are not the price with insurance. How much would Dr. Burzynski charge you for the same number of pills? If it is much more then maybe you should ask him why he charged so much.

  79. #79 Militant Agnostic
    March 8, 2012

    stewart1982

    This is rather unethical, if his phase II trials show effective treatment he should move onto a phase III trial (I know, I know there is one open, but he doesn’t appear to have anyone enrolled in it).

    Isn’t that convenient. This is a common quack and crank trope – any day now we will publish our evidence and overturn the orthodoxy, any day now. Somehow they manage to keep this going for years.

  80. #80 stewartt1982
    March 8, 2012

    @79 and everyone

    Is it possible to find out when Dr. B had his first clinical trial? I’m just curious to know how long he has been stringing this out.

  81. #81 herr doktor bimler
    March 8, 2012

    Is it possible to find out when Dr. B had his first clinical trial?

    The records at the clinicaltrials.gov database show all his phase-II trials starting 1995 to 1999, after he was stopped from directly offering a cure for cancer (though it’s OK if his internet proxies make that offer on his behalf), and he started using the “only selling a place in a clinical trial” loophole.

    http://clinicaltrials.gov/ct2/results?term=burzynski

  82. #82 mark davidson
    March 8, 2012

    Doctors and Cancer researchers get cancer too. Apparently,even though they
    know that Chemo is a fraud they go ahead and submit themselves to Chemo, even
    though they know it doesn’t work? Wow, that’s real dedication!

  83. #83 Delurked lurker
    March 8, 2012

    @82

    Chemo does work. Ask anyone who has been cured of lymphoma. Plenty of evidence to back my statement up as well.

  84. #84 rork
    March 8, 2012

    Bimler, on the Danny thing said: “Are you suggesting that mainstream oncologists will not do everything in their power to treat cancer? You lost me at that point.”

    OK, to make my point I’ll be having to overlook any promises, the money, the sort-of trials, and several other sleazy things, and stick just to the part where you do some sequencing, mRNA assays, and perhaps some FISH to obtain leads, and based on those try a targeted therapy that is very likely off-label. Not many mainstream oncologists do that, and I’m not saying Dr. B is doing that for many patients, but my understanding is that it is done for some.
    That may actually offer some hope. It should be IRB approved and part of a real trial ideally. I am rather scared of the wild-west kind of doctoring that such tactics will bring on, and want to draw some lines, but am not sure where to draw them. I read a story that sounds like something of a success today:
    http://www.bio-itworld.com/2012/03/08/progress-problems-clinical-genomics-sequencing-xgen-congress.html

    Summary: relapsed B-ALL patient was assayed, and found to have very high expression of FLT3. Sunitinib works on AML cases that are something like that, so they tried it. Patient might have been helped.

    I’m not wanting at all to be an apologist for Dr B. I am interested in how to manage the situations I’m trying to describe. For example if I wanted my tumor to have such data collected, and can’t get on trial, is it OK for me to pay to obtain the data, and then pay for the off-label drug for which there is only plausibility. I’m thinking so, but feel very uneasy. If a hospital started a trial where they do this sort of trying-to-get-lucky attack, should IRB approve it? What properties would the trial have to have? Consenting people also sounds hard, since I worry it won’t really be “informed”. We might find the overall tactic worked, but we could be helping one kind of patient while seriously harming others, and this worries me too. Point me to where this subject has gotten seriously discussed, or enlighten me directly.

  85. #85 Militant Agnostic
    March 8, 2012

    dedicated lurker @83 = I think you need to get your sarcasm and satire detector re-calibrated.

  86. #86 prn
    March 8, 2012

    rork, I live in the “wild west” on the “buyer side” dealing with an advanced colon cancer. Those “lines” are often little Berlin walls with unfriendly armed guards that have to be scaled, smashed through, end run, co-opted, or tunneled under. Legally, of course, I have prescriptions etc available.

    Life has been much better in the “wild west” than the “marxist regimented east”. Saw a colorectal surgeon for the insurance’s approval of a CT scan today, he’s impressed by the extremely favorable results so far.

    It’s already hard enough, with unnecessary extra regulatory related expenses, to maintain supplies of various items. I fear that added regs will “disappear” health items (again) or multiply their cost (again) or even create inferior approved products (again). I don’t need anymore lines drawn for me or mine. I will also suggest that the existing “lines” largely maintain the outrageous pharmaceutical price structure that we have in the US.

  87. #87 prn
    March 8, 2012

    rork, cont’d
    PS. The treatments I am buying have nothing to do with Burzynski. The common ground with his patients is potential interference with “experimental-integrative medicine”. My medical purchases have a more global view, where Euro-US products and protocols are not automatically assumed superior.

  88. #88 Composer99
    March 8, 2012

    prn:

    Rather more regulated health systems have both better health outcomes on average and smaller expenses than that of the United States. See here and their source (Commonwealth Fund report based on OECD data).

    Your characterizations of over-regulation and “marxist regimentation” are of a piece with your smear of oncologists, and since both appear to be based on “your experience” rather than any empirical evidence – well, need I say more?

  89. #89 prn
    March 8, 2012

    Composer99
    Many of those more regulated economies appear to be financially unsustainable or questionable. The results that appear better than the US may be because our regulations have relatively financially unconstrained, perverse effects. An easy competition in a comparison.

    Research and clinical experience at the individual level is a much different thing than the mush of average and “standard care”. Industrially, custom solutions in this manner often mean the difference between world class (most efficient or effective) producers and a van(qu)ished corporation. Most people simply don’t have the resources for such solutions. I feel sorry for people in similar situations, stuck with “standard”. I am not “proving” something, I am alerting some here to a ground level perspective that is either missing here, or misunderstood.

    I don’t usually criticize doctors for their preferred treatments alone, rather I criticize them for interference with and lack of basic support for intelligent patient efforts to improve their outcomes beyond standard care.

    You might read the Ben Williams, Virtual Trials link that I posted in #16.

  90. #90 Sauceress
    March 8, 2012

    I hope Danny comes back to answer some of the questions posed here. I mean, why wouldn’t he if he genuinely wants to dispel false information about Burzynski?

  91. #91 flip
    March 9, 2012

    @Danny #33

    Were you told you were part of a clinical trial? Were you told the treatment was experimental? Were you told why you had to pay so much money? Do you know whether other doctors charge money to be part of a clinical trial? Why do you call it ‘training’? Were you told that Dr B owns the pharmacy you get your meds from – and were you discouraged from attempting to get them from a cheaper pharmacy? Did you research to see what this treatment was and how it differs from any suggested by other doctors or from published research? Did you research to see whether or not there was any efficacy (ie. published research) to the treatments?

    No matter what I think of the Drs… good luck and I hope you do get better.

  92. #92 epador
    March 10, 2012

    If it weren’t for HIPPA, I could provide you with the names of three patients I saw who died during his therapy, including one who developed a rare localized fungal infection from an injection of his product.

    I saw no response in any of those three patients who doggedly pursued the therapy until the end, except for the one who got the fungal infection and figured out he was a quack. She opted for hospice.

  93. #93 Mark M
    March 11, 2012

    @Danny

    Many things can shrink a tumour. Surgery being the most obvious.

    5-year survival rates are the real indicator of whether something actually gets rid of a tumour entirely.

    Burz has never said what his 5-year survival rates are.

    Why don’t you ask him yourself?

  94. #94 Maya
    March 13, 2012

    I don’t see how Burzynski can be “shut down” even if the TMB does take away his license. He’s a business owner, and he can still employ other doctors at his business.

    I suppose it might serve as a heads-up to his overseas victims… but his team of online supporters will find a way to spin it. They’ll say he had his license taken away because he’s just *that* maverick-y.

  95. #95 Maya
    March 13, 2012

    Zach, depending on the location of the tumor(s), brain cancer can be hell on one’s ability to spell and use proper sentence structure, even among patients who were accomplished writers before.

    Danny, considering that among the things Burzynski stands accused of is falsely reporting the results of MRIs, I hope you are getting copies of your MRIs and the reports, and having them read elsewhere.

    You don’t say what you have, but I suppose the odds are 52% that it’s glioblastoma. Yeah, the prognosis *sucks*. We’re all shopping for a better prognosis, that’s the American way. But look for hard data. Always look for hard data.

    And get someone else to read those MRIs.

  96. #96 test
    March 15, 2012

    test

  97. #97 ken
    March 17, 2012

    My friend after being treated at MD Anderson for five years with chemo died-
    with horror stories of pain and suffering- controlled by morphine drips.

  98. #98 ken
    March 17, 2012

    Big Pharma clinical trials? Vioxx anyone?

  99. #99 Shay
    March 17, 2012

    Desperately changing the subject, anyone?

  100. #100 Jacob
    March 28, 2012

    Lets do some math. For patients who have chosen radiation only take the number of people who came out in remission divided by the number of people who chose radiation only. Now compare to the number of people who chose the Burzynski method and came out in remission divided by the total number of people who chose the Burzynski method only. /conversation

  101. #101 Chris
    March 28, 2012

    Jacob, what are those numbers? Please provide that data from verifiable sources. Especially the Burzynski patient records.

  102. #102 Beamup
    March 28, 2012

    Would be awfully nice if Burzynski actually bothered to publish his results so that could be done.

    The quite obvious likely reason he hasn’t done so, of course, is that the comparison comes out quite unfavorably for him.

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