The False Hope of the Burzynski Clinic
It's a powerful media myth that special American cancer clinics can provide miracle cures for cancer when the NHS cannot.
Yesterday’s Observer contained a full page, heart breaking story of a 4-year old girl, Billie Bainbridge, who has a inoperable and rare form of brain cancer, Diffuse Intrinsic Pontine Glioma. The only option for this aggressive cancer on the NHS is radiotherapy which may reduce symptoms for a few months. Two year survival is less than 10%. It is difficult to think of anything more devastating for a young family.
But the family of Billie do not want to give up – quite understandably. And they are trying to raise £200,000 to send Billie to the Burzynski Clinic in Texas that claims success with many forms of cancer. To help in this aim, comedian Peter Kay announced on Channel Four last night that he was holding fund-raising gigs this week to help Billie get the treatment that may save her life. As he said, “I just couldn’t not do it”. Enlisted to help raise the funds in many ways are a group of performers, including Badly Drawn Boy, Michael Bublé, Cheryl Cole, Gorillaz and Radiohead.
The fund raising web site, The Billie Butterfly Fund, describes the family’s hope in the Burzynski clinic. We are told that Billie has already travelled to America for preliminary treatment and that now she “has been accepted for pioneering Antineoplaston Therapy at the Burzynski Clinic in Texas which has been conducting FDA (US Government) clinical trials”.
Antineoplaston therapy specifically targets cancer cells without harming healthy cells. Each patient has a personalised treatment plan determined by medical history and extensive analysis. Typically treatment lasts for 8-12 months.
In order to be ‘accepted into the trial’, the family need £200,000. But there is hope,
Although there is no cure for Billie’s type of brain tumour, the treatment in America has improved survival rates in similar cases to Billie’s. It is conducted under the control of the responsible US Government agency. Most importantly it offers the real prospect of improving Billie’s chances of beating this dreadful disease.
It’s a compelling media story – a dying young girl, an NHS unable or unwilling to respond, generous celebrities and a hugely expensive and pioneering cancer clinic in the United States. But scrape away at the surface story and there is something much darker – and that story needs to be told and myths dissipated.
The Burzynski Clinic is at best described as ‘controversial’. There are many warning signs given out by the clinic that are typical of cancer quackery, and so great caution is required.
Let me list some of my concerns,
- Burzynski is a ‘lone genius’. Great scientific medical cures rarely stem from single individuals. They are the result of collaboration and teams. Such breakthroughs need to be assessed by peers to ensure that the researcher is not mistaken or overstating their case.
- Burzynski is claiming he has found the ‘cause of cancer’ and his antineoplaston therapy is its cure. Cancer is a name given to many different diseases. There is not a single cause and treatments need to be targeted as specific forms. It is a common quack claim that they have found the ‘single cause’ and they have a ‘unique cure’.
- The ‘cure’ – Antineoplastons – which were extracted from urine (yes – its the piss treatment) – has no good independent peer-reviewed RCT evidence suggesting it is effective.
- Consequently, the treatment is not approved by US regulators. However, it is approved if treatment is part of a trial.
- The Burzynski clinic charges hundreds of thousands of dollars for people to enrol themselves in a trial.
- These trials of this ‘new and pioneering treatment’ have been going on for decades – since 1977. No end appears to be in sight.
- The website Quackwatch has raised concerns about the origin of Burzynski’s claimed PhD.
So, there are many reasons to question this treatment and to wonder if it is anything more than the misguided obsession of lone doctor who might best be describes as a maverick.
Many people appear to have had deep concerns about the practices of this clinic. Dr Stanislaw Burzynski has been on trial for cancer fraud. He is not a stranger to the court room. In a trial in 1997, he was acquitted after a hung jury was unable to convict. An anti-health fraud organisation, NCAHF reported that interviews with the juror’s suggested they felt he “was guilty as charged of violating court orders not to distribute his unapproved “Antineoplastons” in interstate commerce”, but that due to the strong emotions of some of his patients, who believed in him, some jury members felt unable to convict, despite the judges warning to ignore such emotions.
Support for Burzynski appears to be very strong amongst some of his patients. But as NCAHF say, “Trial by placard waving emotion is a form of mob rule.” Burzynski, his supporters and the media are able to cherry pick those cases that appear to have done well with his treatments. Living patients can be strong advocates.
But those who die are silent. Earlier this month, an Irish newspaper reported the tragic story of Zoe Lehane-lavarde who also had a media campaign running to raise money for treatment at the Burzynski Clinic. The report says that Zoe ‘responded well to treatment’ at the clinic. She died, aged 18 months, a few weeks ago.
The case reports that are relied upon to show successful treatment are by their very nature one sided. They ignore the voices of the failures. That is why properly controlled trials are so important, independently peer reviewed. They are sadly lacking with this therapy. We cannot know if the ‘successes’ are small or large in number, or if the successes are due to the new treatment or some other factor. Cancer affects people in many ways. Some live for many years despite many others dying quickly.
Dr Stanislaw Burzynski faces more problems. It appears that the Texas State Medical Board are holding a hearing next April to revoke his medical license. The response from his supporters is huge with campaigns to write letters to Governer Rick Perry. There has also been a movie made in order to support him as he goes on trial – Burzynski the Movie – which you can buy or rent – yes buy or rent – on Amazon, Netflix or Lovefilm. I hope none of the money from his patients has been used to make such propaganda.
I fully anticipate getting lots of comments from his supporters here. Do a twitter search for #burzynski to see the passion. It also appears that threatening letters are being sent out (text here) to bloggers who question his treatment. That is not the action of someone who seeks the truth but of someone who wants to silence debate. Such attempts to silence cannot be seen to be in the best interests of patients but look more like the attempts to protect commercial interests.
The Observer should not have published an article that was so uncritical of such a questionable treatment. (You can write to the readers’ editor at reader@observer.co.uk). Such articles will encourage others to go down this misguided path. You may argue that such a treatment gives the family hope, even if it is not effective. It may do. But it looks as if this will be a false hope – and false hopes rob people of real choices. The Bainbridge family are in the grip of utter tragedy as the mother is also suffering from cancer. There are undoubtedly many ways that £200,000 could help them, but putting a little girl through dubious, risky and unpleasant treatment, that is exceedingly unlikely to help, is not one of them.
The treatment is not without its consequences. The article in the Observer describes what is going on,
Billie has already started the clinical trial. She went to Texas for a month, six weeks ago. She was able to come back and bring the treatment with her. She has a backpack with the treatment in it and a Hickman line going into her chest which administers this liquid every four hours. She has not been eating since she has been on the treatment so she also has to be fed through a tube – milkshakes and protein drinks.
False hope takes away opportunities for families to be together and to prepare for the future, no matter how desperately sad that is. It may make the lives of those treated more unpleasant and scary. (Antineoplaston therapy is not without dangerous side-effects). It exploits the goodwill of others and enriches those that are either deluded, misguided or fraudulent. It may leave a tragedy-struck family in financial ruin afterwards. Giving false hope may be more about appeasing the guilt and helplessness of ourselves rather than an act of kindness to the sick.
The Observer article talks about how Billie’s uncle has had his ‘cynicism melted away’ by the generous acts of people like Peter Kay. It appears to me that the success of the Burzynski clinic does not depend so much on published robust evidence (he has had decades to produce this) but on human kindness and goodwill. The blogger Orac describes how the Burzinski clinic has been relying on “harnessing the generosity of strangers” for years.
Orac sums it up,
The bottom line is that Dr. Burzynski is not a miracle worker. He is not a doctor who sees something that mainstream science has not and who therefore has a cure for many cancers that mainstream medicine scoffs at. He is not a bold visionary. Rather, he appears to be a man pursuing pseudoscience.
I understand how Peter Kay must feel when he says “I just couldn’t not do it”. We are compelled to help in such tragic circumstances. But I fear that in this case, such help will do more harm than good as others are drawn down this path. As always, people take claims on face value – a clinic that claims to help when others won’t or can’t. There are places that celebrities can go to to help ensure the science is sound, such as the charity Sense About Science, who welcome enquiries of this sort from people being asked to endorse claims.
Peter Kay is right to raise money for this family. And good luck to him. But it would be a dreadful wrong for this money to end up in the hands of someone whose actions cannot be distinguished from mere exploitation of the desperate. That money could make a big difference to this family. It could allow both mother and daughter to be looked after in comfort, without worrying about mortgages or jobs. It will allow them to be together. It will not perform miracles. And nor will it make the pain go away. But such a simple gift will indeed be an act against cynicism and false hope.
Update
24/11/2011 The Burzynski Clinic Threatens My Family. In which this post gets a response from the clinic.
Related posts:
- Burzynski in Court: Patient treated like a ‘Cash Machine’ Dr Stanislaw Burzynski has some problems. His forthcoming hearing with the Texas Medical Board has been widely publicised. It would now appear that he has more immediate concerns. According to...
- Dr Hilary Jones Promotes Questionable Burzynski Clinic on TV There is a stark and inexplicable difference in how the mainstream media and bloggers have been covering the Texas based cancer clinic of Dr Stanislaw Burzynski. There has been an...
- The Burzynski Clinic Threatens 17 Year Old Blogger I have been hinting that Burzynski has been threatening other prominent UK bloggers. Well, that blogger has now gone public. Rhys Morgan Rhys Morgan is a 17 year old schoolboy...
- The Burzynski Clinic Threatens My Family. Tonight, the entertainer Peter Kay will be performing the first of two special sell-out gigs in Blackpool to raise funds for a very poorly four-year old girl with brain cancer....
- The Observer Responds – Complicity in Misinformation This morning, the Observer has responded to the large amount concern raised by its coverage of the Burzynski Clinic two weeks ago. The Observer told the story of how Peter...
From Sweeney Todd, re Pirelli’s Miracle Elixir
“Smells like piss – piss with ink”
“There are places that celebrities can go to to help ensure the science is sound”
Yes, well… Unfortunately, one of the more puzzling and worrying features of this case is that they (or at least the family) seem to have done just that:
“So the search was on to find treatment anywhere in the world which might improve her chances of surviving this terrible disease. The family has been given tremendous help with this from Joseph Foote Trust, a national brain tumour charity.”
http://www.billiebutterflyfund.org/billies-story/
http://www.josephfoote.co.uk/billies-story/
It seems 3 out of the 4 “family stories” (Billie’s Luna’s and Supatra’s stories) on the Joseph Foote Trust are for treatment by Burzynski.
I rarely write comments along the lines of “great post, well done” (I find that it tends to perpetuate an echo chamber) but in this case I think this account is so well-written that I would like to make an exception.
You have summed up the issues with remarkable sensitivity and tact to the people involved at the centre of the story (namely, the Bainbridges and those who are raising money for them) whilst still giving due emphasis to the red flags that the Burszynski Clinic raises, and their implications.
This is something that I have tried and failed to do myself with such eloquence. I hope you don’t mind me pinching a few of your themes if I ever find myself in an awkward conversation about alternative cancer treatments in the future.
U can decide urself
http://www.trueactivist.com/human-the-film/
Feel free to remove this post too – it is 18:13 as I hit the return key But the post above from Michael Grayer states that it was posted today at 6:59 pm
Thanks for the article…
A sad story on so many levels. Shame on the Observer for not researching the topic properly and, in my view, adding to the misery of those involved.
Crumbs! Look at the blurb on amazon about the movie, and read the comments!
http://www.amazon.co.uk/Burzynski-Movie-Cancer-Serious-Business/dp/B003X3CF68/ref=sr_1_1?s=dvd&ie=UTF8&qid=1321910899&sr=1-1
Another terribly sad case is happening in the Guildford area at the moment. The local radio station picked up on the fund raising and ran a campaign all last week, raising £40,000 in days. There was no concept of taking the “pioneering treatment” at anything other than face value, nor any sense of what a fund raising drive could have achieved for alternative causes.
But to criticise an individual campaign is to deny someone “hope” and it’s hard to see the damage from misplaced hope.
http://www.964eagle.co.uk/hopeforhannah/
The damage is to the many other folks who could have been helped with that money. The ‘opportunity costs’ as managers and economists would say.
Who else might have been helped with any sum raised? Who now won’t be, because funds are now being diverted by the good but un-informed intentions of a comedian.
False hope is no hope at all and, well, false.
It seems none of you have done any homework on this subject. No one said this doctor is a “Miracle worker” only this anonymous “Orac” character. The USA’s Food Drug Administration has verified the results of Phase 2 clinical trials authorized and verified by the FDA, and has given permission to enter “Phase 3″. For Pediatric Brainstem Glioma, Antineoplastons are the first in medical history to have ever not only CURED this disease, but has also shown enough safety and efficacy to have ever been allowed to enter Phase 3 trials.
You people being duped by propaganda, much like the Americans who think that Obama is a Muslim or is not a US Citizen, much like the “climate change deniers”.
It’s going to be quite interesting to see the look in all your faces if this little girl is cured. It’s going to be sad to see you try to negotiate with yourselves to deny yet another scientific fact.
Proof of permission for FDA Phase 3 trials (not that you care out proof):
http://www.cancer.gov/clinicaltrials/search/view?cdrid=691516&version=HealthProfessional&protocolsearchid=9793737
Not only that, if you check the United States’ own National Cancer Institute website, under “table 2″ they themselves verify over and over “complete response” after “complete response” in PHASE 2 trials: http://www.cancer.gov/cancertopics/pdq/cam/antineoplastons/healthprofessional/page5
So, does this mean that the National Cancer Institute also deserves its own “Quackometer” as well?
Enjoy your state of scientific denial.
‘Roger’ – your post is marked with an email address from an ‘E Merola’. Would that be Eric Merola? And not ‘Roger’? Eric Merola who worked with Burzynski to produce his new movie – available from all good retailers?
I wish people would declare their potential conflicts of interest.
“It’s going to be quite interesting to see the look in all your faces if this little girl is cured.”
….and will you be back here if she isn’t? No I didn’t think so.
Jonathan
Eric
Can you tell us about all the other ‘trials’ that have and haven’t taken place over the 30 years that Burzynski has been peddling his wares?
Why doesn’t anyone mention the fact that chemo and radiation are in clinical trials also! That’s right people! It is still not approved for the treatment of pediatric cancers. Why? because there are some many devastating side effects that the quality of life is diminished if they survive the treatment. Radiation to the brain, loss of sight and hearing, hypothyroid, hypo-pituitary, loss of cognitive skills, loss of 4 IQ pts per year accumulative, brain necrosis(where the brain actually dies). Then there is the side effects of chemo- sterility, diminished immune system, kidney failure and so forth. I rather try a therapy that is not invasive first then it that doesn’t work then what the hell radiate the poor child. I mean really people conventional medicine is archaic do your research and take responsibility for yourself. Trust me the pharmaceuticals don’t care about your health, they just want your money. They don’t cure they just sustain your for as long as they can to get the maximum amount of profit from you.
I say the family did the right thing, they just want their child to live a productive life for ever how long that may be. I’ll be praying for their success.
Also check out, “Cut Poison Burn”, it will enlighten you. It’s a documentary on the corruption of the pharmaceuticals.
Judith
Alan, Judith is undoubtedly correct that some forms of chemotherapy are in clinical trials and that chemo often has very unpleasant side effects. What’s less clear is why this matters. Neither of these facts make Burzynski’s treatment any more credible, nor his methodologies any less suspect. And, even if we generously call Burzynski’s product an “experimental treatment” used only on people for whom other interventions have failed, it still leaves the uncomfortable question over the life-altering amounts of money he charges. It far exceeds the cost of conventional chemotherapy (per patient, per year) and so it’s hard to take seriously those who stand him in contrast to the profit-driven, venal, pharmaceutical industry.
What’s more, Burzynski’s treatment has numerous unpleasant side effects itself, as is made clear in the final link provided by Eric “Roger” Merola above. Indeed, it seems numerous patients have had their treatment suspended or ceased due to serious side effects.
You’re absolutely right, Lesmond. What Judith says has nothing to do Burzynski and his ‘treatment’.
Orac anonymous? Surely you jest? The person behind the pseudonym is perfectly well known.
It wouldn’t have taken more than a few seconds to find his real life identity. I’ll give you a hint: he’s an oncologist.
Oh! Does that mean that Orac is a proper cancer specialist and not a quack?
“Not only that, if you check the United States’ own National Cancer Institute website, under “table 2″ they themselves verify over and over “complete response” after “complete response”
This article states NO such thing! Did you post this with the assumption that no one would actually read it? Did you intentialy misstate the evidence? Burzynski has been doing his “studies” for over 2 decades now. NO one has been able to duplicate his astonishing cure rates. In fact NO ONE even knows what his cure rates REALLY are. He’s published volumes of data that has been looked at by other researchers and they are unable to make heads nor tails of it. And meanwhile he continues to charge exorbitant fees for his treatments. I suspect his “clinic” is nothing more than a money mill. In the end this type of operation always fails. It’s too bad for all of the frightened, desperate, vulnerable cancer victims who turned to him for hope.
Claire
It seems strange that you people do not divulge the fact that the Burzynski Research Institute has not received one cent in support from any U.S. Government agency. Where do you think the money comes from to support Burzynski’s research and clinical trials?? In case you can’t figure it out, he must make money to support the research & clinical trials. The FDA gets vast amounts of money from pharmaceutical companies and since Burzynski owns the exclusive patent on Antineoplastons there is no way for any pharmaceutical company to profit from them………..unless of course they try to steal his patented invention……….oh, yeah….. they tried that. Hmmmm…. Why would a pharmaceutical company want to steal a patent of an invention that does not work?
This boils down to big money in the “Cancer Machine” Single handedly, Burzynski’s invention has the potential to cause financial devastation to the companies that make all these toxic –chemotherapies and radiation equipment, not to mention what will happen to all the Cancer treatment centers around the united States. Do you think that the FDA wants to see their million dollar application fees paid to them by pharmaceutical companies dry up? Real simple…. Follow the money and see who stands to lose the most from Dr. Burzynski’s success
Scott
I added links to the National Cancer Institute tooth’s comment page, and the moderator DELETED them. You see, you are not interested in reality, only myth.
Patience, dear Roger. Your comment went into a moderation queue as it triggered certain rules that mark it out as promotional spam. I shall let others judge if the algorithm was correct or not.
My wife recently died of an Astrocytoma brain Tumour. She was only 27 years old. I absolutely breaks my heart that so much money is going to be wasted in this “treatment” when it could make a real difference to brain Tumour research. That would help everyone. This “treatment” helps nobody. I wish a famous comedian would be as touched by MY fundraising efforts, which will actually benefit the wider public. But I guess a dead adult raising money is not as sad as a dying child. I do wish the Bainbridges all the best. It is a horrible disease than can only be beaten by more research.
Marieke,
I’m so very sorry for your loss.
This is the best thing that could possibly happen regarding the Burkynski clinic. A high profile case in the full media spotlight, focussing on a girl who quite clearly hasn’t got a lot of hope from conventional medicine (poor thing). If Peter Kay and Badly Drawn Boy etc etc are going to give up their free time and raise huge amounts of cash for this cause you can be damned sure they’ll be keeping up to date with the progress of treatment and reporting it on their websites, twitter feeds etc etc. The higher the profile the better. When the treatment inevitably fails hopefully we’ll get some much overdue assessment and analysis as to whether this man is a crank or not. As you say the dead have had no voice in the debate. This individual case gives the full light of unbiased scrutiny to Burkynski’s practices. In addition, whilst a tragic case for the family concerned they won’t be left pennyless at the end of it all whilst Burkynski sits counting their cash (unlike countless thousands of other families who have gone down this path). All that will be lost will be a couple of nights in front of the TV for a handful of celebrities who may have learned a thing or two about pseudoscience in the process.
Ooops. Burkynski should be Burzynski. My apologies for misreading it.
What is upsetting that the Twitter feed for Harry Moseley, the kid that raised more than half a million for Cancer Reseach, a charity that funds real solutions, before dying of a brain Tumour, is re-tweeting charity fundraising requests from other parents to send their children to this quack. I can only barely restrain myself from asking them not to do this because I don’t want to tell people there is no hope.
Problem is, the quack will probably say: she has 4 months to live without the treatment and then later say that the fact she is still with us after 6 months is proof his rubbish works.
Aarrgghh it makes me so desperately angry.
Marieke.. whats upsetting you is that you are ignorant. Research for a few minutes and you will find that it is a period of 5 years before a patient is considered cancer free. If you watch the film Cancer Is Serious Business you will see how many times the FDA have tried to bankrupt Bursynski so big pharma can steal his invention without the possibility of retaliation. He stood before several grand juries, his patients went each time and supported him and told their stories of shinking and tumours which had disappeared, the FDA themselves said that it was not about whether the drugs worked or not.
The evidence is right in front of everyones faces if they care to look at it. Remember that the doctor who tried to convince other doctors to just wash their hands between working with dead bodies and delivering babies was driven insane by the amount of abuse he got for that suggestion.
Stop making assumptions. Look at the evidence yourself, and look at where the money comes from. Think for yourselves people, and if you dont know how, learn.
If I had listened to my NHS doctor, who loves this website by the way, I would be handicapped by now. I survived because I can think for myself, I take time to read the source of the informtion and I dont trust anyone who stands to profit from my illness.
The “cure” is always across the border or the ocean.
Friends went to Switzerland 20+ years ago for a cure.
Many US citizens have gone to Mexico for cures.
A new book just released, “Pathological Altruism”, discusses misguided and even dangerous activities. Empathetic nurses “burnout”
and a good nurse is lost.
2 addenda:
1. This treatment appears to have been trials for so long, the patent may have expired.
2. Many well intentioned alt-med practitioners fall under the broader definition of pathological altruism. A fervent desire to do something for another person, in spite of potential ill consequences, limits people’s judgement. An unfortunately common occurrence.
Eric or “Roger” posts comments in support of Burzynski under numerous pseudonyms over at The 21st Floor.
For what it’s worth, I think he actually does think it works and isn’t a fraud in the conventional sense. But he’s a film-maker, not a scientist or clinician, and I don’t think he understands the issues. More irresponsible than fraudulent, I reckon.
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Very nice job with this post.
There are so many characteristics of pseudoscience in the Burzynski story.
Science has been bumped out by emotion. That is why we need clinical trials. Rational people can’t win on this one because our goal is seen to be the death of a child. It is infuriating that such complicated medical and social issues are boiled down to overly simple points like “If it was your child, what would you do?” What a story. I don’t think it has a happy ending no matter WHAT happens.
How is it not happy no matter what the outcome is? That must be the worst post i’ve ever seen on this topic… WOW…
http://www.billiebutterflyfund.org/billies-story/
“Although there is no cure for Billie’s type of brain tumour, the treatment in America has improved survival rates in similar cases to Billie’s. It is conducted under the control of the responsible US Government agency. Most importantly it offers the real prospect of improving Billie’s chances of beating this dreadful disease.”
The cognitive dissonance there is just heart-breaking. I remember watching a television programme from one of those series about children’s hospitals of which there have been several. We were shown a surgeon reporting back to parents after surgery for their little daughter’s brain rumour and saying they’d removed 95% of it. The parents were so pleased. My wife and I just looked at each other and said “Oh, shit”. 5% of inoperable cancer is still inoperable cancer.
It really is appalling that there are quacks happy to prey on people caught up in disasters like this.
I have been following all these post on all these sites for a long time now and I have to finally respond to some of this… what some people don’t understand is these people are told they have nothing left anyone can do for them and they might as well go home and get there affairs in order, or watch there child die and there is no hope. I am disgusted with our treatment system after going through it myself since September 4th. that’s when I was diagnosed with an inoperable brain tumor grade 3-4 oglioastrocytoma. the system is terrible. I have been researching every possible avenue since September when I was told I had 6-12 months to live. I have 3 children 6, 14, and 17 and a beautiful wife and they are my life. I also coach 2 baseball team still currently and I just can’t except that when I feel like there’s still a chance. I have been to m.d. Anderson, the cancer treatment center of America in OK. and my local dr’s are Emory. My local dr’s said 6-12 moths, the cancer treatment center is basically a caretaking facility to let you die happy with whatever drugs you want, and m.d. Anderson wants to do more radiation even though they say I will have very bad side effects from another round. and ALL of them say the chances of anything even stabilizing the cancer is about 10% and that will only last a few months until my body rejects the meds. I have already had 6000 rads of radiation and 8 weeks of temodar 140 mg every day. I was told I couldn’t do any other treatments or clinical trials until I went through this process and it didn’t work. (which they already knew wasn’t going to work). since it has grown 30% and now they say I need to get everything in order. and they told my family in our meeting to let me die when I’m ready and not to string me along (just let me die in peace) it’s like they just don’t have a solution. one dr even said all they can do is poison my body so bad that it makes me last a few more months. and then I saw a specialist in Oklahoma, a neurologist that said in his 20 years he has only seen 1 case where the tumor has actually started shrinking and he is only 18 months in and he has no idea why he is getting better. if he knew he would do it for everyone. Not very encouraging. the whole point to this post is there are many survivors from the burzynski clinic with deadly diagnosis who have gone through the ringer and still survive after everyone else tells them and their family there dead. Not to mention he only gets the people who are so sick by the time they get to the clinic are worst off from the traditional treatment it makes sense they are harder to cure. I’m sure it only makes sense the earlier you get to it the better chance you have. And as far as the money he charges, I see everyone saying it’s so expensive compared to anything else. but here’s the real deal, since September I have received over 200k in medical bills through my insurance. I could be on dr. b’s treatment for 2 1/2 years for that amount of money. Also of course it’s going to take forever to get 96 clients for the clinical trials when the clients have to pay out of pocket because insurance wont cover and the special stipulations to even get in are very specific, and he’s paying for all these trials on his own. It’s ridiculous. and then in all these posts people just sit around and hope it doesn’t work so they can feel they were right about him being a quack. it’s really sad to me people are like that. I have talked to numerous survivors with my story and they were all told the same thing and 5-10 years later they are not only living but talking to me about what they went through. I had to get FDA approved for this treatment and I start next Wednesday. I finally got approved only because temodar didn’t work and neither did radiation, they already knew that. you want to know why I think that is? my temodar cost 400$ per pill 7 days per week. How much would the industry lose if I could just skip that process? it’s crazy. I never knew until I’m watching it happen to me. I wish people would put themselves in other peoples shoes when they are talking about anything they haven’t been through first hand. All cancers are different traditional works for treatable cancer. but when it’s not they just want you to follow the (protocol). and unfortunately it’s impossible to not notice how much money they make in the process.
One more thing, I am a business owner. whether one wants to admit it or not cancer treatment is a multibillion dollar industry. the status quo must be kept because if there is any other treatments that prove more successful than the traditional chemo and radiation the multibillion dollar corporations, doctors, cancer centers, medical schools, FDA would lose their income and have to change the entire way they look at and treat cancer. The burzyinski clinic must find a way to keep their research going because insurance companies do not cover his treatment nor the government funds him for a research that might be the future of cancer treatment. as any one that has common sense knows if you give away your product for free it’s a matter of time before you go bankrupt. There is no hospital in the united states that would give you chemo or radiation for free if you don’t believe that, ask any cancer patient that has no insurance and see if there being treated. And to Billie and all the other people going through this my heart goes out to you and you are in my prayers.
I have nothing against families doing the best they possibly can. When somone we care about is in danger, we try to help them. That’s just being human.
Now, Burzynski is something else. The clinic keeps its records bottled tight, we do not even have enough data to say whether the survival rate of the people under his care is any different than people who are untreated. If (and it looks like this may well be the case), he is charging people hundreds of thousands of dollars for a placebo, then he is preying on people who are at their most vulnerable.
If you beat your cancer, danny, it will either be your own body fighting it to a standstill, or the work of a real scientist (as a side note, the way peer-reviewed journals work makes for a process refreshingly resistant to conspiracy). Most likely a combination of the two. And I really, really hope that you do beat your cancer. Even with seven billion of us on this rock, each of us matters.
@danny
“I wish people would put themselves in other peoples shoes when they are talking about anything they haven’t been through first hand.”
You underestimate your fellow human beings. It is precisely because we can imagine feeling the desperation you describe and know it could happen to any of us or our loved ones, that we are enraged at what appears to be – for reasons set out in the above blog – a monstrous scam.
Then again, I’d venture that those who are not in your shoes are better able to look at Burzynski dispassionately and if they are seriously concerned at what they see and can make reasoned and supportable criticisms, then it is their responsibility to do so publicly.
Your suggestion that we are hoping people will die so we can be proved right is unjust – to put it mildly – but excusable. I can understand why you are unable to see things from any other perspective than your own.
Good luck with the treatment. I sincerely hope it works and there is nothing I would like more than to be able to say that even those whose opinions I respect the most were wrong about Burzynski.
Please let us know if it works.
Hi skepticat. I was mainly speaking of the post before yours that really got me. She stated about the whole Billie situation that whatever the outcome it is not good. I’m sorry if I states that wrong. I just know soooo many people sit back and watch and don’t understand the full scope of what there looking at. I never did either until it was myself. I just believe a lot of making it through any rough situation is having a positive outlook and having hope and believing it can work. The reality is we need someone with a cure or at least someone who can save 1/10 instead of 0/10. To me that is progress. I’m a very positive person and I know things happen for a reason whatever that reason is i will see it through. I can tell you one thing for sure for everyone who posts here. Or anyone who reads this post. Cherish the things you have while you have them. I see life through a whole other perspective at this point and it took something this drastic for me to realize all the little things I missed before. I used to stress a lot and get frustrated and looking back at this point it could always be worse. I don’t stress anything anymore. It’s not worth it. All i have done the last few months is make good on everything Ive screwed up and overlooked. And cherish every waking minute with my family.
I’m not gonna ramble anymore and i apologize if I offended anyone with the words from my previous post. I just hope I am one of the lucky ones and I can get through this and bring this to the forefront so everyone can see our system is flawed. (my opinion).
I wonder if someone could help me understand something.
Is there *any* chance of this working? There appear to be a number of people who claim to have survived cancer after the Burzynski treatment. Would these people just have survived anyway?
I realise one of the points of clinical trials is to work out the difference between a treatment working and chance, but the bit I can’t get my head around is the people who claim that they or someone close to them have been cured of something both incurable and deadly.
Are these people just Burzynski stooges? Are they somehow mistaken? Is it just chance? This part confuses me.
There are many reasons why someone with cancer may have appeared to have benefitted from a treatment when they did not. That is why trials are so important.
For a most recent look at the evidence presented by Burzynski in his movie, you ought to look at this response,
Burzynski The Movie: Does It Prove The Efficacy of Antineoplastons Against Cancer?
That answered literally all my questions, thanks for the link!
I sat through the movie a while ago just to see what was in it and found it rather poorly presented – it seemed to resort more to tugging on heart strings than anything solid, while the end bit sounded like Loose Change style conspiracy stuff.
If the state of the US regulatory system is as bad as it describes then that is indeed worrying, but it still doesn’t mean Burzynski is right – and also it seems slightly hypocritical that it berates the US regulatory regime when he could well owe his business’s existence to it; I suspect many other countries would have him run out of town on a rail for such a lack of proven efficacy.
The other observation I’d make is that skeptics will always be on the back foot with this argument. I mean, the ultimate message of “your daughter is going to die and there is very little you can do about it” seems a heartless one by anyone’s standards – we just have to try to persuade people that it’s those who offer and profit from false hope that are even more heartless, and as such you’re to be congratulated on the sensitive-but-salient nature of your article.
The one thing i can say about that is the clinic has been approved for phase 3 trials after December 2011. and in order to get to phase 3 there has to be results showing the medicine has a positive effect on the disease… I don’t think anyone knows for sure because he doesn’t have to release his results until after phase 2 is completed in December. when i was there he told me they would be releasing all the data in December or January. When i was sitting with dr. B and his medical staff he told me that his ANP has a 40% chance of stabilizing and stopping the growth, 30 % chance of shrinking and killing it and a 30% chance it will not work based on the genes i carry but we will know within 30 days from the day i start treatment the impact it is having.
he did tell me the 1 problem may be the tumor breaks down to fast and can cause issues if the medicine works too quickly because the tumor will bleed in my brain. 2 survivors i talked to with the same type of tumor had the issue where it broke down very quickly and they had to come off of the ANP flush there body out and get back on the ANP.
And from my understanding there’s only been 1 drug approved in the last 10 years for chemotherapy for the treatment of brain cancer and that is temodar. so for this drug to get to phase 3 of trials is a big deal. and yes it took him forever but imagine how difficult it must be to get 96 patients that have to pay without insurance for his treatment. they have to get 2 more children to enroll and his trial will be closed for phase 2. the trial on adults is already closed and the only way you can get in is on a special exception, that’s how i got in. u have to have gone through conventional then prove within 14 days by MRI that the disease is still growing after conventional treatment thank god i was at the cancer treatment center of America and they took an MRI the week before i went Dr. B’s clinic and it showed growth. i think that is why all the patients are from so long ago because the trial ended years ago for adults… i will keep everyone updated on my experience to keep as many people informed as to how all this works out.
Phase III trials are not some sort of formality, but the only way we know of providing the robust evidence required to show that a treatment is effective. If these trials have not been done then it is not possible to say with any conviction what you might expect from a treatment.
You would have to ask yourself how B knows these results without these trials? The history of medicine is littered with people who have misled themselves with pet theories about treatments. Dr B might be a genius – but without the peer reviewed evidence, independently replicated in other institutions, we cannot know. That he has had since 1997 to produce this data would suggest there is something seriously pathological with this line of enquiry.
If you look deeply into his research and look at some of the documents presented in the movie you will see that he has tried to have other places duplicate his work but they want to do it there way. they changed the protocol just before the trials were done at other institutions and he was pissed off and said it wasn’t going to work because they were treating too large of tumors with the wrong dosage. and he manufactures all the drugs on his own so there is a reason he keeps all the trials in house i’m sure. he has the stats and so does the FDA. to make it to phase 3 is a huge accomplishment.
seems like anytime he lets someone in they try to steal what he has that’s been documented in 3 different cases. even the government. he posts his studies on his own and its up to the patient going to treatment to believe them or not. There’s video’s online of other doctors saying this is going to be the treatment of the future. they have told there patient there is nothing they can do for them and then when they go back to there doctor cancer free these doctors say they are programmed in school not to think outside the box just prescribe the medicine that fits the disease. even those doctors are stunned at the results… all i can say is for my sake i hope it is the answer, but it doesn’t save everyone nothing can. And just for a moment think about what would happen if it is. the medical industry will crumble if it is approved for hospital use. And they would have to buy the medicine from him instead of the pharmaceutical companies. he also told me he believes he will be able to tell based on certain things in the future if you are going to be one of those people who get cancer based on defective genes in your body. which means he can not only fight it but prevent it in the future.
Danny – you may be right and it may work. But this behaviuor of blaming other researchers (if you are correct) is seen commonly in those practicing pseudoscience. Such people often present themselves as martyrs being pursued by vested interests – but the truth is that they are failing to convince other professionals and so are lashing out against the system. Burzynski’s difficulties with other researchers is not proof that he is right. It is proof of his difficulties. That is all.
His difficulties will never go away if he is really threatening the industry as a whole. the pharma companies have never had to buy drugs from anyone they make them themselves… imagine there loss. also if you watch the movie it clearly shows all the documents presented in court that DR. B was telling them to stop the trial study because they changed the protocol of the agreement and they said sorry it is too late. you can find the documents online i’m sure i will try to find them and post the links. and there is a lot of DR’s out there saying the future is in gene therapy to identify the missing genes and specifically target the bad genes and reverse them.
It is of course classic quack pleading that cures are being suppressed by an evil conspiracy of vested interests. People who make such claims must have a very shabby view of humanity. The Pharma Companies may have many faults and much power, but they do not own doctors, and so to ascribe to them such venal motives is pretty sick. If people are telling such stories, you can be sure they are protecting their own vested interests.
You must note that Dr B runs his own business that makes many millions of dollars. It is quite possible to tell the story in way that makes it look as if he is just protecting his own interests with such messages. I will not. But be sure you are not being manipulated. Caveat emptor.
i have to respectfully disagree with you on that one when it comes to cancer based on my experiences over the last few months. From the insurance companies to the FDA to the big pharma’s to the DR’s to the schooling. the DR’s are given options based on what’s approved by the FDA. even though there is another drug more effective to fight the disease. for example i was put on temodar from the start, when there is a more effective drug called avastin for my particular brain tumor yet the powers that be make you go through the first round with temodar and then allow you to go to the more effective drug that’s proving better results. there is no sense in that unless someone is trying to continue to bleed the money out of that drug before it is obsolete to make the 200 billion it cost to get the drug approved.. even a DR at the cancer treatment center of America said some things that made the light bulb in my head go off based on all the things i dealt with before i saw him. even he said they are trained according to protocol and there is no outside the box.. you can tell even he was disgusted with some things like the avastin thing but he wasn’t going to put the system down even though i could feel he wanted to..
There is no doubt its a huge industry and it’s a cash cow for people involved in it. there’s a lot of corrupt things i pay attention to that to me is BS. for example off subject for a second, why is congress allowed to do inside trading and everyone in the country will go to jail for years like Martha Stewart. they are allowed to legally make money off of something we get crucified for and if it truly goes that high with government just imagine the cancer industry. I’ve only been going through this a few months and i am 1 patient and im already over 200k. those numbers are ridiculous. there 100k plus people diagnosed every year. if it is a business why find the cure? just keep treating.. that’s just my opinion and i don’t think this issue will ever be solved unless someone battles far enough to prove there are other methods that work. as a cancer patient you should be able to decide what treatment you want not the government. and the DR’s don’t give you options, they say this is what it is you will be doing or there is nothing else. everywhere Ive been its the same treatment no matter what.
Danny – you are of course seeing this through the prism of US health care – where I would quite agree that big money has a stranglehold on health policy. But the US is near unique in the western world in lacking a comprehensive socialised health programme. And this is why your healthcare costs many more times than anywhere else and fails to deliver results to so many people.
In the UK, your arguments do not apply. Doctors are salaried, we do not allow direct to consumer health marketing – and all the other distorting things that you suffer from. A doctor like Burzynski though is still unable to convince his European counterparts. The US is full of money making health miracle peddlers precisely because there the system is so profit driven.
Japan is convinced, they are currently bringing his treatment there. in the process of doing so now..
Japan is NOT convinced, they’re not “bringing it in” over there. What has happened is, as far as I can tell, a Japanese group has done some work on Burzynski’s ideas and claimed to have support for his idea. The study however is a “cells in a dish” experiment, and not a very good one. It only found publication in a poor quality (low impact factor) oncology journal.
And the UK must be much different based on what ur saying because the US is full of sh**. lol. I’m sure things are much much different over there.
Yes they are. Everyone has access to cancer treatment according to need and not according to ability to pay. You do not need to spend a fortune on health insurance or rely on an employer to do so. No one becomes bankrupt because they have a serious illness – unless they are misguided enough to travel to the US for treatment. We have a higher life expectancy that the US (which ranks just below Cuba) and total fraction of GDP spent on healthcare is half what it is in the US.
If Dr B has a try successful drug on his hands and he could show it worked, Big Pharma would be all over him trying to outbid each other to license his products and sell them on a huge scale. They are accused of wanting profit, but then your conspiracy theory requires that they act against that desire. It don’t make sense.
Typo
“If Dr B has a trULy successful …”
Danny, if they’re running a conspiracy to suppress a cure, they’re not running a very tight ship. Remember, several cancers ARE now curable because of “conventional” treatments (testicular cancer, lymphoma are both curable at late stages due to advances in conventional medicine). Survival rates in other cancers are improving continuously – again, due to conventional approaches.
Moreover, consider the fact that cancer research is a global phenomenon, researchers from all over the world communicate with eachother, they have a geeky thirst for the latest news and breakthroughs – even the small & obscure improvements in our understanding (I have worked on academic cancer research for around 4 years – my PhD is in molecular oncology). With this in mind consider that in all the countries outside of the FDA’s jurisdiction, NO cancer experts are adopting Burzynski’s methods. You can’t just put that down to an FDA/GOTUS conspiracy! If there was credible evidence in the scientific literature that Burzynski was on to something, scientists and healthcare professionals all over the world would be crawling over eachother to replicate his work. But they’re not. Why?
I guess time will tell.. i can tell you once it hopefully passes phase 3 it will be worth a hell of a lot more money… it’s not a conspiracy it is what it is. if he was truly scamming every patient and making millions in the U.S. they would’ve put him in jail a long time ago regardless. there’s no way he would’ve survived this long. they confiscated every file he had years ago and they still didnt stop his business. they had every single file image and data for every client. at that point they would’ve called him on his BS and put him in jail.. there is no way they would’ve let him continue, that was there opportunity.
Maybe because he hasn’t released his data for the trail, and maybe because his treatment doesn’t work. one day we will know…
unfortunately i will know before you guys probably do…
as shitty as that sounds. lol. hopefully i can report back to all of you as I’m going through it and we can all have the same opinion.
hopefully a great one.
danny – you appear to know an awful lot about his history for a patient.
Yeah because I had a lot of time to study it while going through regular treatment. Ill be a patient on treatment by next wednesday. I have to get the stint in my chest Tuesday and a pet scan Tuesday and then I start. I think I should know an awful lot after going to his clinic and research and talking directly to him and his drs. Wouldn’t u?
Wouldn’t anyone who is about to go through all this with his clinic do as much research as possible with all the negative stuff everywhere and everyone calling him a quack
Hi Danny. You really so seem like the most level-headed person I’ve read who is willing to give this therapy a try. Have you thought about blogging about your experience?
I’m sure there’s a lot of people who would be interested in reading an ongoing account of someone undergoing this treatment method.
Best of luck.
Jonathan
Danny – well then good luck to you.
I am sorry that you have been swayed far more by conspiracy theories than scientific evidence. Conspiracy theories do not treat cancer. Good, robust, evidence about treatments, that is peer reviewed and subject to independent replication can. That is about all there is too it.
[...] some support to the family at this difficult time. I also expect that critical responses from higher-profile bloggers and hopefully, ultimately, newspapers like the Observer itself, will have the effect of informing [...]
danny, did you read the link that LCN provided?
http://anaximperator.wordpress.com/2011/11/22/burzynski-the-movie-does-it-prove-the-efficacy-of-antineoplastons-against-cancer/
What did you make of it?
Obviously there is no definitive way to draw absolute conclusions about competing interpretations of anecdotes, but I think the worrying aspect is the highly partial and non-nuanced way in which those anecdotes seem to have been presented.
Do you see the problem?
Further to the blog post linked above, I have now written to The Observer’s Readers’ Editor, Sense about Science and Cancer Research.
I think it is high time that a critical, well informed and objective piece on Burzynski appeared in the mainstream media.
A further thought on this conspiracy theory. Burzynski’s therapy depends on relatively simple chemistry, especially in comparison to the terribly expensive development of monoclonal antibodies to attack tumours. If a company could refine and market his ideas they’d make a fortune.
Is it really credible that in all the pharmacology labs in all the world, no one has tried out his preparations on cells and/or animals? Patently we have seen no published negative results, but I would predict a fairly high tendency to publication bias here. They’d have a strong motivation not to associate themselves with negative replications of therapies with a dubious reputation; not many PR up-sides and many possibly down-sides.
[...] wrote about my concerns with this and how this might be giving false hope to a vulnerable family and how it may be [...]
A sad story on so many levels. Shame on the Observer for not researching the topic properly and, in my view, adding to the misery of those involved.
From what I’ve seen (on YouTube mostly), most people promoting this are the same people who believe the 9/11 was an inside job, and that the government permits things like MSG, pasteurized milk, and mercury fillings to control the population. Indeed the only reason I’ve even heard of this is because a YouTube user, who disagreed with my views of a chiropractor giving medical advice, sent it to me.
Mike Warren has a letter in the Observer this morning.
http://www.guardian.co.uk/theobserver/2011/nov/27/observer-letters-democracy-colombia-phones-cancer?newsfeed=true
However, there is nothing I can find in the rest of the paper (online, no print copy) to suggest they are investigating the Burzynski Clinic and taking a less credulous line on the subject. I’ll be generous and wonder whether they have something brewing and will produce something a bit more sceptical and analytic in the coming weeks. However, newspapers, even the Sunday press, are capable of tackling big stories that require some investigative depth on much tighter timescales than they have been faced with once this story blew up in their face.
Danny, I think you are a very intelligent. You have done alot of research regarding Dr. Burzynsk. You are correct that the costs of chemo and radiation can be just as expensive if not more than the treatment cost at Dr. Burzynski’s clinic. My son has brain cancer and we have been paying thousands of dollars each month for all his treatments, doctor visits, MRI’s, etc… I know some people are skeptical of Dr. Burzynski. But, we are researching the idea also. He has been working and treating people for years. There are medications that doctors treat many of their patients with that have not been researched as long. The FDA has tried to stop his practice. Well, if he truly is a quack why have they not been successful? There is no definite cure for cancer. But, the chemo that is given is poison! Why wouldn’t you want to try something that you body produces naturally. No one knows for sure if the treatment will work. But, they also can not guarantee that chemo and radiation will work. And what is the cost of a human life? In the end, it is your life. It is your choice. I wish you the best of luck in your battle.
Have you found any papers by Burzynski in a high quality peer reviewed journal less than five years old? Have you found any studies that independently replicated his results?
The best wishes for your son. But you might be interested in other families experiences in addition to what LCN wrote above:
http://www.lymphomation.org/story-kandj.htm
http://www.burzynskiscam.com/index.php
(by the way, it is bad form to claim someone else’s blog as your own, you do not have to fill in the Website box, and we know you do not own this blog)
First, I never said I was an expert. Second, I was not replying to you. I believe Danny has the right to make his own decisions. And I wish him the best of luck. I was not trying to claim the blog. For some reason it would not go through with out the website filled in. Yes, I will do more research before I make an informed decision. But, just because I am willing to look into an alternative to poison does not make it the wrong decision.
Are you very sure about that? Do you really want to associate with an organization that has an employee who threatens high school students (see LCN most recent post)?
I really wish the best for your family. I just don’t want to see more misery put upon you.
Add the following article by an oncologist to your research:
http://www.sciencebasedmedicine.org/index.php/stanislaw-burzynski-bad-medicine-a-bad-movie/
Teresa, if you read Chris’s link (to the Respectful Insolence blog), you’ll find that Burzynski is also using chemotherapy (but not in a particularly organized fashion). If his ‘antineoplastons’ – more accurately, phenyl butyrate – appear to work in some cases, it is likely to be because of those chemotherapy drugs.
I just saw this campaign (http://teamhannah.com/) and then stumbled on this article via twitter by total coincidence. Do the people involved in campaigns like this (and I’m sure there are others) know of the doubts surrounding the Burzynski clinic!?
Danny, My prayers are out to you and your family. keep us all updated on your progress.
thank you Peter, i appreciate it…
The family of Billie have issues a statement about the decision to seek treatment at the clinic.
http://www.billiebutterflyfund.org/family-statement-re-billies-treatment/
Sadly, in an already sad situation, I don’t think they grasp the nature of the problem.
Can someone tell me why the listed inclusion criteria for these “research” studies at the Burzynski clinic fail to say the possesion of $200k is one of the pre-requisites?
I will absolutely keep everyone updated on my experiences every step of the way. ( as much as i can) i confirmed everything today. on Monday of next week i will have the cvc placed in my chest to administer the medication and a PET scan. on Tuesday i will start treatment with the ANP. i spoke to another doctor today while setting everything up and he explained to me based on what i am diagnosed with and my scans and medical history and my physical condition, there is a 30% chance to kill the cancer, a 40% chance to stabilize it and get it to stop growing, and a 30% chance it will not work… that’s the 3rd time Ive heard that from the clinic. once from burzynski himself. I know a lot of people are skeptical about this treatment but in my opinion he doesn’t have to have everything peer reviewed if he owns everything he is doing. if this proves to be what he says it is he will change the direction of the cancer industry. I’m not saying this is a conspiracy I’m just looking at this from a business perspective also and i know if he has what he says he has it’s huge. Alot of businesses in this industry will be crushed. i think anyone can see that if they open there mind a little bit. as far as me and my decision there is no other options. and for those of you that are in this situation it’s a really hard decision to make. BUT it’s yours and u have to believe in your choice no matter what. someone in an earlier post said if i get cured its probably my mind… lol I WISH!!! as for Theresa I promise to keep you posted on my experiences. And i hope everything works out for you and your family. DR.OZ if you know who he is, is one of the most prominent heart surgeons. he has an interview with DR. B on opera radio, i suggest you listen to that also there’s some good info in there.
Danny – Burzinski owes it to his patients to have his treatments peer reviewed and independently replicated. Medicine is littered with individuals who thought they had discovered a new treatment but it turned out they were fooling themselves.
I thoroughly recommend Feynmans Cargo Cult Science essay,
The first principle is that you must not fool yourself–and you are the easiest person to fool. So you have to be very careful about that. After you’ve not fooled yourself, it’s easy not to fool other scientists. You just have to be honest in a conventional way after that.
At best, I would suggest that Burzynski has created his own cargo cult based around himself. Without external validation, there is no escape from such a prison.
V sorry for your loss.. however, my sister-in-law had her 3rd scan in 3 months since she has been on Antineoplastens and for the 3rd time it has shown significant reduction by 45%. Her only two side effects are being thirsty and the feint smell of urine now and then. She has a glioblastoma multiforme type 4, which chemo had no effect and rad only stopped it in its tracks for 2 months.. the words of the oncologist at the royal marsden was “dont bother paying into a pension you wont make it to next christmas” so my brother looked for other ways to help her. Luckily for her her immune system wasnt damaged too much by chemotherapy so the Antineoplastens could work properly. She is being cured as we speak…. Isnt that all we want to do for loved ones????
I wonder why people are wasting their time with opposing Dr Burzyinski or others in the past who have cured cancer, these people are trying to save lives. Unfortunately the people in power havent got our best interests at heart rather their own pockets.
Its apparent that all this bad press is starting months before the trial… how convenient.
Its a horrible disease that can be beaten by Antineoplastens and has been for 30 years.. trillions of dollars have been raised for cancer research for 30 or so years and have not got the same results.
ill leave my sister in laws webpage incase you think im making her story up afterall this is a serious blog. http://www.hopeforlaurafund.co.uk
Prove it. Post the peer reviewed data that has been published in a high impact journal that is less than three years old that honestly summarizes that 30 years of research. Show us the real data, because the plural of anecdote is not data.
I guess a scan showing an unbeatable disease is being beat isn’t good enough? regardless a GBM is not beatable.. and if she is getting better and it is shrinking forget the peer reviewed data. the proof is in the scans… Toby maybe if you post a few ct scans you can change some peoples opinions. people who really need to know like the people that are in the same situation as myself and your sister and will have other opinions then this is all a scam…
just saw the scans on your link. sorry didnt realize they were there already. remember a GBM is supposed to double in size every month but it seems it has at least stabilized the tumor based on those scans if not shunk it some…
Toby, I think all of us here are very sorry for Laura’s horrible disease, but I’m also sorry to say that I am pretty convinced that the hope founded in Burzynski’s treatment is false.
Please, don’t feel obliged to answer personal medical questions, but one aspect of this is that people end up living with terminal illness in the public eye.
When you say reduced “by 45%”, do you mean that the sole mode of treatment during that time was “antineoplastons”? That does not seem obvious from the public records.
This blog with MRI images;
http://www.hopeforlaurafund.co.uk/blog/item/mri-results-day
Is not very persuasive. The line measuring 24.9mm on the earlier image clearly extends beyond the white line while the later measurement of 20.7mm stops short of it. Also, the images are clearly not quite equivalent slices. Look at the surrounding features, they are not identical. These are not merely my opinions, but also those of a cancer specialist:-
http://scienceblogs.com/insolence/2011/11/the_burzynski_clinic_disavows_marc_stephens.php
I am very sympathetic with your family’s distress, but those of us opposing Burzynski do so from a heartfelt belief that the treatment is literally a waste of money, effort and dwindling time. It is precisely because the area is so emotive that patients and their families are wide open to exploitation by unscrupulous people. I’m sure most of the opponents of Burzynski see ourselves as trying to protect people.
Firstly, my thoughts are with Laura and her family. But our thoughts are also with future Laura’s and how best they can be helped.
There are so many red flags over Burzynski’s science and business that it would appear to be highly unlikely that his treatments are in anyone’s best interest.
His actions against this site and others are not those of a man of science. His associate threatening a 17 year old boy by sending pictures of his house. That is gangsterism not medicine.
Can I ask you who told Laura her tumour had shrunk? Are you getting good independent assessments?
Laura has her MRI scans every 6 weeks and blood tests 3 times week and these are done here in the uk privately at a local hospital. The MRI scans are first checked by the radiologist here and he gives them a report. these scans are then sent to the clinic in texas where they do a separate report. so you see they are getting two reports and if they say the same thing then they know the result is accurate. the radiologist and dr burzynski have never spoke and never will.. so far the scan reports have said the same, a reduction every time. currently as you can see from their website the tumor has reduced further since my last post. the radiologist and oncologists here in the uk are v shocked at the results. So far so good for laura and our family. Also, to hannah (teamhannah) whos first scan has been v positive.. you can see the result on her website. Someone asked about seeing scan pictures, these can all be seen at once on the hope for laura website there is a short video made by hannahs partner ( from teamhannah) he is documenting her treatment..
It’s about time someone said something said something positive about the clinic. Toby i hope that it continues to dissipate. i met patients there that were on the road to recovery as well and i think no one will truly understand until they go there for themselves and look someone in the eyes that’s getting better after every other doctor told them they were done… thank you for the post.
BTW, all the bad publicity is coming from the fact that someone is sticking up for the clinic. weather or not hes handling it improperly there’s a lot of BS stated about this clinic and all that negative publicity doesn’t mean his treatment works or not. its just more fuel on the fire…..
Toby
One further thing, would you care to offer a comment as to whether the actions of Marc Stephens are what you would expect of a respectable medical clinic?
As you can see from the Press Release reprinted at Orac’s blog, the Burzynski Clinic has now thrown Stephens overboard, but does its content further inspire your confidence in the Clinic’s willingness to engage in open and honest scrutiny of its results?
Has Toby gone away?
It would be great to hear your reflections Toby, now that you’ve had time to ponder matters.
Toby doesnt need your BS, he has already said there has been a reduction and that the meds are working. Keep an eye on the website he posted if you really are concerned for the wellbeing of the family, he doesnt need any more grief from you people. There are many other survivors out there to interrogate to if you doubt the treatment works, but I doubt anyone naysaying here will go to that effort.
i think anyone who doesnt have cancer should fuck off and leave these people alone its a free fucking country and they can spend there money on what they think is best for them!!! doesnt chemo and rad cost more than antineoplastins??? your all a bunch of wankers!
Nobody is stopping them, but some people think that people considering this therapy should be aware of the fact that “antineoplastons” aren’t proven to be effective (even though Mr Burzynski has conducted trials for what – 20 years or so?) and that they will probably receive chemo along with the “antineoplastons”. Don’t you think they should know that?
One interesting turn of events sparked by Mr. Stephens very unprofessional behavior is that people are actually looking into Burzynski’s publications. It seems there is not much there (there is more in the comments):
http://freethoughtblogs.com/blaghag/2011/11/a-look-at-the-burzynski-clinics-publications/
Why is it always short-sighted laymen and other self proclaimed experts that disseminate opinions like the one written in this article?
I see nothing factual written in this article even while Le Canard rails against Dr. Burzynski for not being able to “prove” his claims.
The reality is that many of the people who have been given a prognosis of imminent death by mainstream medical doctors have been cured by Dr. Burzynski.
At worst, Dr. Burzynski has a much higher incidence of cure rate and a much longer survival rate for his patients than are being accomplished through the conventional chemo type treatments.
Dr. Burzynski has achieved this while virtually eliminating the side effects of conventional treatments that include the destruction of healthy cells and often ‘death by chemo.’
I wish people would educate themselves before giving their opinions about things they do not understand. It appears that there are many things people like this author are ignorant of and the result is fear of things not administered by an FDA approved spoon…no matter how toxic that spoon is.
Read about carboplatin and cisplatin the many other old chemotherapy drugs that have been killing people for a long, long time. Educate yourself about what those drugs do to your body and what the cure rates are in all stages compared to what Dr. Burzynski has accomplished with his non-toxic treatment.
Listen to the survivors who were told to go home and die.
In time, the facts will be exposed and I believe it is you and people like you (the author) who will cringe as you relive your ignorance.
If I were on a civil jury, I would award damages to Dr. Burzynski for your attempts to discredit him with nothing more than your misguided and ignorance based opinion.
I’m only a layman myself but I have lived through the experience of watching a spouse battle cancer through conventional means and as a result I educated myself as much a layperson can regarding these things.
Part of the impetus for pursuing this information was the Doctors telling me that there was no cure for my wife’s cancer, that no person had ever been cured of it at her stage and that the best that we could hope for was to keep her alive as long as we could by mitigating the adverse affects of the chemotherapy and radiation treatments that would eventually kill her.
As they explained that the chemo kills cancer patients before the cancer has a chance to and they tried to maintain a balance between quality of life and longevity, I realized that we were still in the dark ages of treatment.
She eventually passed away just as they had predicted and it occurred to me that the MD’s had death down to a science but I understand that they did the best they could given what their education has afforded them; I hold no grudges.
Still, why some people insist on staying there (in the dark ages)as opposed to exploring new and sometimes unorthodox treatments is as hard for me to grasp as it is for narrow minded people to grasp that change is very often a welcome improvement on failed systems…it shouldn’t boggle your mind so and it wouldn’t if you’d do a little research before you make up your mind.
I had the “honor” of meeting the grand and glorious “Dr. B” myself in 2009. The gravity and insensitivity of the scam perpetuated on those dying of cancer by this man and his “business” are without bound. He is a fraud of the worst kind, a “doctor” who can not answer direct questions as to why his supposed “treatments” work, if his supposed “treatments” benefit any individual patient or what one can expect as far as life extension and side effects of his supposed “treatments”. His staff of “Doctors” are unemployable in US medicine as they know little more about oncology than the average pre-med college student, (they certainly had no idea about chemotherapy treatments and current chemo protocols), this was plainly evidenced by blank stares in response to most of my questions about such). FRAUD plain and simple. Please do not take your loved ones to this fraudulent man pretending to be a physician.
wow, and people wonder why the clinic wants this webpage down. no citations.. no evidence.. all the negativity on this page resembles the same sort of arguments creationists use to prop up their faith.
The “hope for laura fund” website is for real, but the grammar and thrust of argument by toby is strangely similar to that of danny. The word “sockpuppetry” comes to mind.
Oh, and before they come back and say how cruel of me to suggest such a thing considering their misfortune, I have mesothelioma (Google it), and I wouldn’t touch Burzynski’s quackery with a barge pole.
or perhaps my words are from the heart rather than cold and calculating? Scarecrow i hope you get well, its your choice what you put in you body.. its choice that people should have. Ive got nothing to gain im a chef and have a gd life im happy laura is still with us and better than she was last may. in fact the doctors at the royal marsden said she would be lucky to be here this january and actually said “dont bother getting a pension” nice eh??
Hi, this is a very sad story on so many levels. Shame on the Observer for not researching the topic properly and, in my view, adding to the misery of those involved.
The scans you compared for Lauras 36% tumour shrinkage are not the ones where she claims it has shrunk you are citing old scans. The wrong ones!!
But she already told you this personally and you still haven’t edited that incorrect quote.
[...] without the wave of awareness that has been generated on twitter and blogs since last November when Peter Kay was raising funds for Burzynski’s treatments and the Observer was running uncritical articles on his [...]
Hey guys just wanted to update on my treatment. I’ve been on the ANP now for 42 days. And my first MRI was last week at my local hospital in Marietta ga. And the results were that my tumor has shrunk almost 25%. I have the actual measurements and I will post them later. Also met Peter and Hannah while in Houston and they were training at the same time I was. Her tumor has shrunk 14%. I have had a few issues like some seizures so they had to up my seizure medicine. And I had some serious headaches. The clinic says the tumor is breaking down rapidly that it is causing issues in my head. And what sux is I have to carry a bag of medicine in a backpack injecting me every 2 hours for 2 hours. But this treatment is working so I’m happy. I know of about 5-6 current cases that are shrinking the tumors in there heads so I’m a believer no matter what.
danny, fantastic news! my brother and laura are in contact with hannah and peter and great news for them too. we wish you the best with the treatment
[...] The False Hope of the Burzynski Clinic Andy Lewis, The Quackometer, 21/11/11 [...]
For your article to be fair and honest..I suggest you follow up on the case of this little girl after treatment and publicize it..if the treatment does not work, then damn Dr. Burzynski but not before. I wonder how many people die after the use of Chemo or Radiation?
JvH
Watch the Bruzynski movie for free:
http://articles.mercola.com/sites/articles/archive/2011/06/11/burzynski-the-movie.aspx?fb_ref=fbLike&fb_source=other_multiline
Who should be on trial? Big money talks!
“Who should be on trial?” Burzynski.
“Big money talks!” The money paid to Burzynski is quite big by normal people’s standards.
Quackwatch is a quack site
Stephen Barrett from Quackwatch had to concede his ties to the AMA, Federal Trade Commission (FTC) and Food & Drug Administration (FDA)
Google it
How is this relevant to the question of whether high doses of phenylacetate (masked by the name ‘antineoplastons’) are an effective and adequately safe treatment for cancer?
How is this relevant to the questionable morality of selling therapy using phenylacetate for decades under the cover of apparently interminable clinical ‘trials’ that are never published in the recognised literature?
How is this relevant to the questionable morality of charging patients costs greater than the price of a typical house for the supposed experimenter’s benefit of acquiring them as ‘trial’ subjects?
Answer these questions, Bob.
The website above (Quackwatch)is quoted as a reliable source, when anyone with half a brain can easily find out that it is anything but reliable. So it is in fact very relevant. As it exposes the type of sources used on this site. And makes anything published here hard to believe. As for Dr Burzynski, the clinical trials will(or should) show if he is on to something or not.
Bob. If you use your full brain you will recognise that there are lots of vested interests who try to discredit that site in order to protect their livelihoods. You should address the arguments and not join in the smearing.
That site has discredited itself:
“Dr. Stephen Barrett of Quackwatch Exposed In Court Cases
At trial, under a heated cross-examination by Negrete, Barrett conceded that he was not a Medical Board Certified psychiatrist because he had failed the certification exam.” he is a quack.
Bob – you are repeating slurs that are gross misrepresentations of the truth.
http://scienceblogs.com/insolence/2010/07/a_nonsensical_attack_stephen_barrett.php
The standards for commenting on my blog are that you stick to the arguments and not personal attacks – especially those based on untruths.
Please apologise.