It’s not over, people. A few days ago, I started posting the stories of patients who had been to see Stanislaw Burzynski and appeared in the news. In the previous post, almost all of them, with a single exception, a girl whose cancer had already been in remission twice (odd, I’m given to understand), died. Orac has recently looked at three cases that have been presented as evidence of Burzynski’s treatment, and he raises some profound, disturbing questions. I omit these cases.
As I suspected, there have been many more. They seem to appear in the news when some family makes a desperate appeal for money to go to Burzynski’s clinic for his unproven treatments:
- On December 1, 2011, the UK’s Watford Observer reports that a 4-year old girl from Oxley Hall is fighting an “ependymoma brain tumour”:
“But at The Burzynski Clinic in Houston, Texas, a pioneering treatment could prove the answer to [the family’s] prayers. The family had to raise £20,000 for preliminary tests, which established that [the girl] is suitable for treatment, and further cash for ongoing medication.” [emphasis added].
The same paper reported on 18 July that the family successfully raised £100,000 for the treatment.
- In Australia, the Ballarat Courier reported on 29 Nov of this year that a group is raising money for Braydon Stefan’s trip to the Burzynski clinic by auctioning off tradesmen’s services. They have already raised $60,000, for a Dr. Charles Teo (could an Aussie look into this guy?) who thought that Burzynski might be a good match for Braydon, at least according to the Courier on the 23rd. [Update: I’m distressed to report that Braydon died in June of 2012]
- On 23 November 2011, the Cambridge Evening News reported that the family of Supatra Adler, a 6-year old diagnosed with a “Diffuse Intrinsic Pontine Glioma brain stem tumour.” They spent 3 weeks at the Houston clinic, and they had doubts:
“We started doubting ourselves with this course of action as it required using up all our savings and travelling to Houston, Texas, for an extended period of time. You see the money is not really the issue other than we were worried it was a scam like so many other alternative treatments out there and if we expended all our savings on this treatment and it was a scam then we would have nothing left should a legitimate treatment come available. During this period it was a constant high and low moment for us as we flip-flopped on whether or not we should go. In the end we both agreed that since the mainstream medical community was offering us no hope for Supatra that we should try everything and anything.” But in the end the cost was immense: “She added the treatment had almost exhausted their savings, costing more than £89,000 so far with yearly costs of up to £63,000.” [Update: 8/10/12: I am very sorry to report that Supatra died in June of this year.]
- On 29 June 2011 of this year, the Las Vegas Journal-Review reported that teenager Kassidy Merritt was going to see Burzynski for treatment of a brain stem ganglioglioma. Her father said that it was costing them $30,000 to start treatment, that the Ronald McDonald House would not put them up in Houston because of Burzynski, and that their doctors called Burzynski a quack. I’m happy to report that she’s still fighting, though I don’t know what her status is as far as the Burzynski clinic is concerned. We’re certainly pulling for her!
- On 17 February 2011, the Contra Costa Times reported that a fundraiser was being held for 4-year old Noah Stout, who had an inoperable brain tumor. Burzynski’s treatment was at the time projected to cost $135,000, toward which mensch Carlos Santanta donated a guitar for auction. He is still fighting too, and that’s a damn cute kid!
- On 27 January 2011, the Grand Haven Tribune reported that Christine Tooker was raising money for treatment. I have only seen her appear in one other article, in October about end-of-life care, and she sounds extremely practical about what is happening to her. I wish her the best.
- Randy Goss, whose story I encountered while looking through the “cancer cures” section of Yahoo’s message boards, according to the person who posted: “[Goss’] treatment was with Dr. Burzynski’s antineoplastons for kidney cancer […] After being cancer free the malignancy returned in 2000 and he was successfully treated again by Dr. Burzynski” At the time of the post, Mr. Goss was seeking additional media coverage of his cure. By his own account, he was feeling better and gaining weight after his return from Burzynski’s clinic in 2000, and he gave his contact information in Dunkirk, New York information in a post, seeking to spread the message of his cure. He died in 2001 of cancer.
- On 14 December 2009, the Patriot-Ledger reported on Natalie Hull who was diagnosed with a diffuse intrinsic pontine glioma. It’s not certain that she ever saw Burzynski, however. The family was praying at the time that she would be accepted at his clinic, and they had reached financial ruin (had they applied with the standard gigantic fee that Burzynski apparently require?), but the paper reported that Natialie had died a few days later.
- On July 30, 2009, the Salt Lake Tribune reported that the parents of Maryn Cella were optimistic about raising $100,000 to get their daughter treatment. There was a $20,000 down payment. Maryn succumbed to her cancer. The blog that her mother set up recording the experiences is an instructive, genuinely affecting read about the roller-coaster that treatment can be. I will leave it to others to examine the family’s experience with Burzynski.
- On 11 May 2008, the East Valley Tribune reported that 2-1/2 year old Briannah Olsen had undergone treatment at the Burzynski clinic. Again we see a story of a shrinking tumor, but which ends with tragedy.
- On 3 April 2008, The Spokesman Review reported that Greg Hiatt was seeing Burzynski for treatment. “
“Greg is doing really well,” his wife said with conviction. “He hasn’t needed to have his chest drained since he began treatment and hasn’t had any side effects.” She credits the positive attitude of those at the Burzynski Clinic and their faith in God for the fact her husband is still functioning when he was given such a negative prognosis. “Our faith has kept us strong,” she said. In the meantime, Hiatt’s medical costs are adding up – his medications alone total more than $35,000 each month. The family believes in the course they have chosen, but know their medical insurance won’t stretch to cover many of the expenses they are facing.”
- On 18 August 2006, the Lowell Sun reported that 6-year old Justin Bissett had been enrolled with the Burzynski Institute, but it was not without significant expenses, for which his community kicked in:
“The Bissett family has found some hope in a clinical trial for an experimental molecular treatment that Justin has been enrolled in at the Houston-based Burzynski Research Institute.
Bissett said there has been a marked improvement in Justin since. But the treatment, as well as Justin’s medications and specialized nutritionist, constitute a significant financial burden on the family, Bissett said. The latest in a series of fundraisers to help offset the medical costs will be held tomorrow in Tewksbury, courtesy of a group of Bissett family members and friends.”
- Lisa Johnson of Plymoth told the Star-Tribune on 15 May 2006 that: “[W]hen a doctor at the Mayo Clinic says there is no cure, why would I question that? But I take all of these recent occurrences as sign that God is saying, `Lisa, you’re going to be OK. Hold on to hope.’ And I feel this treatment with Dr. Burzynski is my only hope.” She died in 2008.
- The Chicago Daily Herald reported on 6 July 2005 that Mateo Casimiro Rotger was undergoing the Burzynski treatment through the clinic: “Today, Mateo is part of a Federal Drug Administration study at the Burzynski Clinic in Houston, Tex., which specializes in cancer treatment. Though it is costly – Rotger estimates $8,000 per month for medical costs and equipment – members of St. Isidore Church in Bloomingdale are offering their grown-up piggy banks. The church has set up a fund to help offset Mateo’s medical costs, many of which are not covered by insurance.” Mateo passed away in September. The memorial website says of Burzynski’s treatments: “We hope that this is the treatment that will answer our prayers. However, as with all things worthwhile, there comes a price and a rather expensive one. The cost of the doctors’ fees, treatments and medicine comes to about $150,000 for only one year’s worth of treatment. “
- On September 22, 2004, the State Journal-Register (Springfield, IL) reported that a benefit dinner for Kathy Robertson was being held to “help defray the cost of experimental cancer treatment for Robertson at the Burzynski Clinic in Houston.” I am unable to find her outcome online, and hope it turned out well.
- An announcement in the 14 Aug 2004 Arkon Beacon Journal announced the following golf benefit:
Organizers of the “J.E.M. Golf Outing” — scheduled for Aug. 29 at Raccoon Hills Golf Club in Kent — are offering up lots of prayers for a rain-free day, but, more importantly, for remission for the three people designated as beneficiaries of the outing:
+ Eunice Huffman-Nichols, a 41-year-old Streetsboro mother of two who was diagnosed with a brain tumor seven years ago. (Eunice died in July of 2005.) [Update 9/29/13: I received a message from Eunice’s brother, who asked I relay the following information: “My sister Eunice, did raise funds for the treatment. She had a 64% reduction of her tumor after 6 months on the ANP treatment, continued for a few more months on the treatment until there was not growth or reduction for a number of months. She was able to walk again, regain her vision and even started driving again! Ended the treatment and stayed stable until her death. She was off the treatment completely for 4+ months with no changes in the tumor at all and then had an emergency situation unrelated to the tumor and passed away while in the ER.”]
+ Mary Vukich, an 11-year-old from Orwell in Ashtabula County with strong ties to the Akron-area community. She was diagnosed at the Cleveland Clinic in October 1999 with six inoperable brain tumors. (I believe that Mary is alive and a member of the Burzynski Patient Group.)
Like the other two, Mary received alternative medical treatment (not covered by insurance) at the Burzynski Clinic in Houston. Cost to golf is $100 per player or $400 per foursome.
- On 10 January 2004, Deseret Morning News reported a fundraiser for Megan Thompson. The projected goal was $180,000. I found no outcome on the web.
- Evan Shaw reported a cure in the 22 July 2003 Calgary Herald. It cost $190,000. I can find no follow up and hope for the best. Searching for corroboration of this story, I came across the story of Albert Loranger who was looking to raise $11,000 a month. I can find no outcome.
- On 27 April 2003 the Sunday News reported that Linda Biemiller was raising money to visit the Burzynski Clinic:
“In January of this year the couple traveled to Burzynski Clinic in Houston, Texas, to meet with Dr. Stanislaw Burzynski, a physician who treats patients with brain tumors using antineoplaston therapy.
“We spent two weeks at the clinic receiving training on how to administer the treatment,” said John. He explained that a portable pump administers two different medicines every four hours for almost two hours, 24 hours a day. The initial treatment and trip to Houston cost more than $25,000, with ongoing costs of $7,200 a month for an average of six to eight months. If the outcome is good, Linda would be put on a pill form of the treatment at a cost of $2,000 a month.”
Skeptical Humanities 
[…] More patients whose deaths Burzynski has presided over… Skeptical Humanities, 05/12/11 […]
As a real oncologist, David Gorski, has pointed out, initial response to treatment for cancers does not correlate well with long-term survival.
But, of course, that’s part of Burzynski’s scam, isn’t it. 😦
[…] Skeptical Humanities is researching patient outcomes. Sadly they are overwhelmingly worst-case-scenario, with only a handful of survivors. […]
I took a look at the blog written by Maryn’s mother, which is very honest and affecting. What struck me most is that, when she took Maryn off of Burzynski’s treatment, she wrote that she still believed that the treatment works, if the protocol is completely kept up, but that administering the treatment and dealing with its effects was too relentless and exhausting for both parent and child. She’d had some lapses in administering the treatment and appears to have thought that was why it hadn’t been successful. She also notes that these lapses seemed inevitable as the treatment was too hard to keep up.
To me her story shows how this treatment can compound the tragedy, leaving families mourning, broke, and potentially blaming themselves, while giving Burzynski a convenient “out” for failures.
I noticed that too, and it broke my heart to see her blaming herself. She was a freaking superhero of superheroes, and Burzynski relies on the irrational guilt people feel when they are in personal turmoil to lure people in (“What if I didn’t do everything possible?”). It’s horrid, horrid, horrid. Grrr.
Paul Leverett, who has some posts online about Burzynski curing him of glioblastoma, died in 2006.
He has a reveiw on amazon praising a Burzynski-touting book, and the review has 56 helpful votes. Most of the reviews are very positive, and I wonder how many of the reviewers are still alive.
Sigh.
Some links on Dr Charles Teo, might politely be described as a ‘maverick’ (not a quality I personally value in a surgeon!)
http://www.abc.net.au/austory/transcripts/s841714.htm
http://au.news.yahoo.com/thewest/a/-/breaking/11770885/radical-op-on-tumour-was-an-option-court-told/
Dr Teo is well known here for his unorthodox approach and latching onto ideas such as cell phones cause brain cancer etc. http://www.smh.com.au/digital-life/mobiles/relax-your-mobile-phone-wont-kill-you-experts-say-20110615-1g2iy.html#teo.
He also subscribes to trying every possible treatment for cancers, even when other doctors will not operate. He has been thoroughly criticised for such an approach http://www.abc.net.au/sundayprofile/stories/3142563.htm.
He is well respected as a surgeon but on this one he is very wrong.
Thanks, Rachael. Continue rocking on.
Bob
I checked some of the websites other people haved linked too in their comments and “Dr.” Burzynski’s little company seems to be engaged in some dubious financial dealings.
For example in the last three available years of the Burzynski Rsearch Institute show NO income just expenses, of about 5 million a year. I’m also not impressed that Burzynski Rsearch Institute is a publically traded “penny” stock company.
I asked in a earlier comment of mine if “Dr.” Burzynski finances had been investigated well it appears that they are indeed dubious. this stuff would appear to indicate that someone(s) are being financially fleeced. Oh and some of the “donations” are in personal checks to “Dr.” Burzynski.
See
http://finance.yahoo.com/q/is?s=BZYR.OB&annual
http://blog.anarchic-teapot.net/2011/11/29/should-you-invest-in-burzynski-s…
[…] always ended disappointingly. Instead, he’s relied on anecdotal testimonies from patients, patients that when revisited were found to usually have lost their battle with cancer soon after a Burzynski […]
[…] cured a single cancer. In fact, Skeptical Humanities has been tallying publicly available cases of patients who went to Burzynski and did not survive. It’s a depressing read, and these are stories we don’t see, even from much of the […]
[…] cured a single cancer. In fact, Skeptical Humanities has been tallying publicly available cases of patients who went to Burzynski and did not survive. It’s a depressing read, and these are stories we don’t see, even from much of the […]
[…] cured a single cancer. In fact, Skeptical Humanities has been tallying publicly available cases of patients who went to Burzynski and did not survive. It’s a depressing read, and these are stories we don’t see, even from much of the […]
[…] Why is it that with more than 35 years of “Research Studies” that the increasingly notorious Burzynski has not found it possible to get his results into a peer reviewed journal? Is it because he would rather continue enrolling patients into his “research” for large sums of cash, rather than get publishing? or is it that the science is largely known already? Orac has assembled a series of links that contain some real science. Meanwhile patients continue to die. […]
[…] cured a single cancer. In fact, Skeptical Humanities has been tallying publicly available cases of patients who went to Burzynski and did not survive. It’s a depressing read, and these are stories we don’t see, even from much of the […]
[…] frequently turn out, when someone follows up on them later, to be nothing of the sort. Often they turn out to be dead of their […]
[…] frequently turn out, when someone follows up on them later, to be nothing of the sort. Often they turn out to be dead of their […]
[…] and untested beyond Phase II trials “antineoplastons”. So today I noticed a post on this site, where the author asked for information regarding an Australian neurosurgeon by the name of […]
Hi there, I’ve looked into the Burzynski-Teo connection :
http://furiouspurpose.me/the-burzynski-teo-connection/
Thanks very much! Very illuminating!
I’m no Burzynski fan, but how can you post a headline like “…deaths Burzynski has presided over” and make bullet points out of “Christine Tooker went to and End Of Life Seminar” (so?) and “Natalie Hull prays to get into Burzynski clinic but dies a few days later” How did he ‘preside’ over her death if she never even got in? You seem to make a huge deal over the ~$80,000 in fees, but you sure as hell wouldn’t pay less for chemo at a regular hospital if your insurance didn’t pay for it. I came here to see a dispassionate repudiation of Burzynski, but did not find it. You seem to be fighting his spurious claims with spurious claims of your own. You should clean up your page because you’re not helping your cause.
Good point Ron, cause of death does not always match up to Burzynski’s cure. Also knowledge of the Herpes I and Herpes II viruses role in cancer is important. This was know in 1972 Special Caancer Virus Program Report of NIH, NCI US PHS, US Dept HEW. Hepres I quick to make cancer, Herpes II slow but still makes cancer.
It was pretty easy to post. I just typed it in and bang, there it was.
Regardless of whether or not she could afford to pay for the unproven, implausible trials, she was dying. Either way, Burzynski didn’t help her.
If his stuff works, and he’s not in it for the money, that that little polish sausage let her die because she could not pay. If it doesn’t work, then he had no right to a nickel. This is of course obvious.
“You seem to make a huge deal over the ~$80,000 in fees, but you sure as hell wouldn’t pay less for chemo at a regular hospital if your insurance didn’t pay for it.” Ah, but chemo might work and has been shown to help. You are comparing apples and luxury yachts.
Everything that I found, I included and backed up. It is the public record that speaks for itself, and if the facts scream fraud, then he’s in all likelihood a fraud.
RJB
Yes Bob, it is easy to post anything you want, right?
I wonder where you get your information from. “The easy posts”?
1. Have you ever meet Stanislaw Burzynsk? No, I’m not pro or op. Yes, you probably got your resources from, media and posts? Question: are posts and media legit sources?
2. Yes, if he was a human being he would continue to treat that girl. How do you know that he’s hasn’t done that with other patients whenever possible?
3. What do you mean by Polish? Are you racist? What does his heritage have to do with this study? Maybe I’m missing something here, some other post. I thought that this is the 21 century.
4. He might be a fraught and I don’t exclude that part but we don’t know for sure. No one can read his mind but what we can do is to take care and teach our future generations on how to live a better life. You probably know the saying “you are what you eat” well, educate so that our children won’t have to deal with these issues in the future. Why do you think everyone wants to eat healthy? Whose fault is it? Food, chemicals, obesity? Did you know that in other countries purchased milk expires within 2-3 days and not 2 weeks? What do you think keeps the milk so fresh for that long? Hum, must be a health additive for your body.
5. No one is forced to go there but we all look for answers to this disease.
6. Five million a year sounds a lot but how much do you think a clinic like his would cost on monthly basis? Staff, medicine, studies, equipment, labs, ect. Do we know how many patients?
Just want to add that I have a very close family member that was diagnosed last year with pancreatic cancer.
1) Yes. Exclusively published materials in the press. usually people begging for money.
2) I’m not talking about other instances. Are you asserting he has?
3) I’m polish. I’m allowed. Polish sausage is our word. Also, I could be racist as hell and it wouldn’t have boo to do with whether or not his treatment works, which he hasn’t shown.
4) Irrelevant.
5) And you should look to published journals for good treatments, not to “rogue doctors.”
6) How much does his gigantic house 14- bathroom gated mansion cost? Not suffering there, boy-o.
Lastly, I’m very sorry about your relative.
I have to go teach.
RJB
Sour grapes Bob?
I Personally know two people my cousins who chemo and radiation did not work it actually killed them. and three other cousins going thru the same right now I don,t expect it to work now either. there mother on the other hand was given a death sentence as she refused treatment for her cancer years ago. When she gave birth to her youngest child she was told by the doctors to go home and find someone to raise her children and without treatment they would only give her 6 month to live. Well 45 years later and no treatment she has raised her 9 kids she is still living but her grown children are going thru treatment with chemo and radiation and are being killed. don,t do it!
ZEE
It seems clear that your aunt either never had cancer or it went into remission. And it’s still the cancer killing your cousins. Your anecdotes are basically worthless as a test of whether or not chemo works. Sorry.
B
Bob you are an awful representative of your position.
Glad you like the site!
Agree with Jack
“I just typed it in and bang, there it was.” When they give you a Pulitzer and ask you how you dissuaded so many potential patients to participate in the clinical trials of an alternative cancer treatment, that’s what you should say. lol. Dr. Burzinsky, you’ve been RJBanged!
I don’t think that you make as much sense as you think you do.
I think he’s upset that it’s so easy to find out how many of Burzinsky’s patients die using the Internet. But he’s got the wrong target – it’s not your fault so many of Burzinsky’s patients die. It’s not even the fault of the grieving relatives who post their stories when Burzinsky’s patients die. On the other hand there is someone at fault when Burzinsky’s patients die, since there have been far too many cases where Burzinsky’s patients die to blame it on mere coincidence. Really I can only think of one person whose fault it might be when Burzinsky’s patients die.
Dang, missed a closing bold marker. Ah well you see what I was aiming at (don’t suppose you’d want to edit and fix it, Bob ole pal ole buddy ole friend).
Gotcha. 🙂
Supatra Adler died on 5 June 2012. http://supatrascancerfight.blogspot.co.uk/p/home_10.html
4 days after Billie Bainbridge died
Can’t find either of then on Dr B’s website
“On December 1, 2011, the UK’s Watford Observer reports that a 4-year old girl from Oxley Hall is fighting an “ependymoma brain tumour”
That’s Luna Petugine. She died on 8/8/12 http://www.lunapetagine.co.uk/
Please keep this blog up and please add any updates or “progress”. We can’t let these victims go unreported.
Did these people who died had to go off Dr. B’s treatment (couldn’t afford, maybe) and that’s why they dies – not because his treatment wasn’t effective?
Hi Jack
Since none of the highly-expensive “trials” are ever published, we don’t really know. In most cases, the cancer continues its growth: there are are encouraging reports from Dr B’s clinic – always widely reported – then an early death. I enclose a letter I wrote (published in August ’12) to our local paper, which had – as many other media outlets – printed human-interest stories that did not tell the true Burzyinski scandal. (The “Amelia Saunders” mentioned is another tragic UK case: she is now seriously ill – and her father has a very moving account on http://www.facebook.com/ameliasmiracle )
“Your excellent newspaper has devoted many articles to Amelia Saunders’ brave fight against cancer, and to the amazing “Ameiia’s Miracle” campaign set up by her parents. I understand that this appeal, supported by so many of our community, has raised well over £200,000 in a matter of months! We all wish Amelia and her family success in their struggle and admire their strength and love, and salute the many local people who have given so generously.
However, I am extremely concerned at the continuous and unbalanced promotion of Dr Burzinski’s unproven, expensive and highly-controversial “Antineoplastin” treatment. As just one example, you quote (WT, 8/8/12) “We have seen the good and the bad. But we have met the people who will now live a long and beautiful life because of this treatment.”
Can you please name these people? Or at least name any children in the British isles whose brain cancer has been cured by Dr Burzinski’s wonder-drug? As so far, in the last year alone, I noted the tragic stories of Zoe Lehane Lavarde, Billie Bainbridge and Supatra Adler. The latest loss, on the day you published the above quote, was Luna Petagine. All their families raised the 6-figure sums Dr Burzinski requires, all took the trip to Houston, all were initially hopeful, and none have survived.
Even after 30+ years of Dr Burzinski’s extremely-expensive “clinical trials” – note that trials of experimental drugs should be, and usually are, free – there is no objective evidence, there are no properly controlled and published tests, to demonstrate that “Antineoplastins” are effective against cancer (or anything else). The media must report the reality, not just the hope. (I stress the WT is not the only offender here, many local papers report cases involving Dr Burzyinski in similar form, and even a national Sunday, The Observer, failed dismally in poor Billie Bainbridge’s case.)”
A (very sad) update to my post below:
“The “Amelia Saunders” mentioned is another tragic UK case: she is now seriously ill – and her father has a very moving account on http://www.facebook.com/ameliasmiracle )”
Poor Amelia died on 6th January 2013 (see above Facebook site)
Mmm, I wonder how many of you bloggers have personally been through a diagnosis of cancer? I agree that anyone researching a potential treatment needs to consider very carefully the treatment they propse to do. I wonder too, regarding Dr Burzynski, why the American courts threw out the FDAs cases against him with NO convictions being upheld. Are you guys saying the American legal system is a sham too? I can’t see any mention of that on this site.
With regard to Charlie Tao…It’s interesting that there are now A LOT of scientific data on the effects of cell phones & brain tumours. These articles have appeared in scientific, peer reviewed journals. Perhaps Charlie Tao has a little bit more interest in public health than some of you bloggers. It’s also interesting that he has had success with patients that other surgeons have refused. I have a personal friend who, 6 years after operating on her brain tumour, is very healthy thank you. She was refused by ‘top’ brain surgeons & told nothing could be done. Yes Charlie Tao took a risk where his collegues had written my friend off. They already had her dead & buried. Charlie Tao gave her hope & she continues to be a gift in her community.
What would your comments be with regard to the orthodox cancer regimes? How is it that oncologists can get a way with treating patients with regimes & approaches, some of which haven’t EVER been trialed? Why do we, as a society turn a ‘blind eye’ to this? How is it that, despite the trillions of dollars raised, there hasn’t been any marked changes with regard to the REAL outcome for cancer patients? Between 1950 & 2007 the death rate from cancer (or should I say the affects of the treatment) hasn’t changed much (most current data from the Centres for Disease Control & Prevention).
I have first hand experience of trying to heal from cancer & know only too well, both through my own experience & those of the hundreds of people I have met here in WA, who have looked to orthodox medicine for treatment the emotional blackmail that takes place. Are you aware for example that, despite the potential of a drug for treating cancer there might be restrictions such as…you HAVE to undergo radiation or chemotherapy before even being considered as a candidtae for the drug. Why? Money. I’ve seen patients being shifted from one chemical infusion to another as each approach fails but in the meantime creates a weaker & weaker body. I’ve seen them go through debilitating side effects – some of which are PERMANENT. The oncologists don’t tell you about those which, as far as I can see, is morally wrong. Did you know that the vast majority of deaths ‘from’ cancer are actually as a result of the treatment…NOT the cancer itself. Why don’t we question this?
I absolutely agree that sites like this need to exist so that in doing research, people can get a broader perspective of various modalities for treating illness & people can make up their own minds as to the integrity of the Dr/professional concerned. HOWEVER it concerns me that this site is FAR from balanced. When are we going to see a system that holds hospitals to account and the treatment approaches they have been following for decades? Perhaps bloggers should read the book ‘Sarah’s Last Wish’ by Eve Hilary. Her story isn’t unusual. Perhaps bloggers should talk to patients who have gone through conventional medicine & had to remortgage their homes to pay for their treatments or, worse still, had to make the decision they can’t afford the treatment despite the potential it might hold. These are heart breaking stories that come out of our modern, meant to be trusted, ‘available for all’ medical systems & is certainly prevalent here in Western Australia…What is actually needed is a medical system that embraces the best of modern medicine & CAM medicine.
Glad you like the site, KC!
Good post KC. It’s rather obvious that it’s easy to quote all of the failed cases since there’s no cancer cure so far that provides over 50% success rate, so there’s lot more failed cases then successful I would like to know what is a survlval rate for Dr.Burzynski’s patients vs traditional treatments? Were his patients subjected to prior traditional treatments, before his treatment? How many of them survived longer then what they were told they would live by chemotherapy docs, before undergoing Burzynski’s treatment?Seems to me like prevailing number of posters on this site assumed that Burzynski drug was supposed to be some magic drug that heals every case of cancer. I can sympathise with peoples desire to belive that this is it, and if it did not work for you or your loved one, or someone you know then feeling of dissappointment and betrayal comes in. KC brings lots of valid points to consider. What do you think Bob ?
“I would like to know what is a survlval rate for Dr.Burzynski’s patients vs traditional treatments”–me too. he’s had 30 years to produce and release that study. But he hasn’t. 30 years! All I know is that when I looked at patients that HE HAD NOT HAND PICKED (like the ones in his ad/youtube movie), every last one of them is dead.
RJB
Didn’t he mention in the video about the survival rate to be about 27% as against much lower number using traditional treatment? Am I missing something here? How about those people (esp. kids) who are now all grown-up, cancer-free and healthy; are they all bluff?
They are not bluffing, they are simply not good evidence. How do we know that it wasn’t spontaneous remission, misdiagnosis or some other alternative therapy they were on? Without randomized controlled trials we can’t weed out the background noise. He hasn’t done a study like that for 35 years, despite offers of help. Run away.
According to the Amelia’s Miracle Facebook blog (http://www.facebook.com/ameliasmiracle) Dr Burzynski has been forbidden to prescribe ANPs till next year. “The one thing really bugging me right now is that the FDA have now stopped the Burzynski clinic from accepting new child patients on ANP until January next year”
Mr Saunders, Amelia’s father, has a very moving Blog on that site. He believes passionately in Dr B. The Amelias Miracle campaign has raised £230k in a matter of months)
Hmmm, I wonder what the mortality rate of other oncologists are compared to Dr. B? Go dig that data up bob, you’ll find that Dr. B is but a drop in the bucket. And there is a fellow you reported on dying after being a patient of Dr. B’s that died a 49 yr. old male, I can’t remember his name at the moment but upon further research it seems his death was caused by necrosis that was caused from radiation treatment he had before becoming a patient of Dr. b. I’m in no way advocating this doctor of medicine. Yet what I do propose is you take in consideration certain facts that have been omitted in your little rant here. For instance the amount of time these people had cancer, was dr. b their first choice, or did they go to him after traditional “treatments” failed? After receiving a death sentence in the first place I don’t believe anyone that’s truly rational would subject themselves or a loved one especially a child to any of these so called traditional treatments. That being said, Dr. B is NOT doing anyone any more harm than what’s already been handed down to them to begin with (and positively much less damage than other oncology clinics) their death sentence. Price-wise the cost is nearly the same if not lower. anyone looking into the cost of traditional oncology lately? That’s true rape as it is.
This is the problem, which Burzynski bots can’t seem to get through their heads. Those horrible, unpleasant, traditional treatments have a chance of working, which we know about because we have seen the data in the peer reviewed literature. Burzynski’s treatment, after 30 years, has never been submitted to the minimal scrutiny to make any claims about efficacy. When you can’t make claims of efficacy, you shouldn’t be treating patients and taking money from them.
Luckily, you don’t define what’s truly rational.
RJB
Bob- who do you work for?
Who do YOU work for?!?!?! (See how goofy that sounds? As if you can’t imagine someone looking at the same evidence and not agreeing with your interpretation, that I’d be more likely to be paid to parrot an opinion than actually have one. A failure of and overactive imagination, that’s what I call that.)
Bob- Your comments across the board are so anti-Dr B that I had to ask that question. Pardon me. However, I am in a dilemma. My Aunt who’s 75 and cannot take radiation/chemo has been diagnosed with Brain Tumor with ~6 mths to live. Should I just watch her dwindle away or try Dr B’s treatment. I have been frantically searching the web, watched his video and almost made up my mind (including convincing my family) except for the fact that comments like yours have made me doubt my decision.
Oh, God, I’m so so sorry about the diagnosis. Burzynski has no evidence for 35 years. If it was my aunt, who I love dearly, I would do everything I could to keep her away from Burzynski, even with the worst diagnosis imaginable. We started a site called theOTHERBurzynskipatientgroup.wordpress.com and time and time again we see false hope. The Burzynski Patient Group has been accruing “successes” for decades. I’ve been doing this for a month and have more patients (on deck to write about) than he has survivors. Reports of growing tumors (or “swelling”) are always interpreted as being a good sign by B and his team. In Crazyworld, maybe. But that will be the first good news that these families will have heard since the diagnosis, often. Burzynski’s ANP is about as useful as giving the tumor a stern talking to, and we have as much data demonstrating the efficacy of lollipops’ anticancer activity as we do of ANP’s. Really. Don’t divert your aunt from standard care. Palliative care can make her comfortable, and that, by god, is something. I am so, so sorry that he has already given you false hope. Hope does not lie in him. Really. Look to other trials. Here’s an analysis of that movie by a research oncologist (notice that there is no negative commentary in that movie–it’s an infomercial): http://www.sciencebasedmedicine.org/index.php/stanislaw-burzynski-bad-medicine-a-bad-movie/
I am beginning to sway away from Dr. B now. I often wonder if Dr. B. has had so many issues with FDA and others, why hasn’t he moved to another country that would allow him to practice and do his research.
That’s a very good question.
I think you’re being a little hard on the guy when you’re blaming him for the deaths of patients with inoperable brain cancer that would otherwise die anyway. Radiation is probably a dubious option at best for these patients. My uncle did die of brain cancer after going through radiation and he didn’t really have a chance. I’m not saying that Burzyinski’s treatment would have cured him – it probably would not have, considering how aggressive the cancer was – but for less aggressive inoperable cancers it might be a valid alternative.
Two points here. First, people distrust the medical and pharmaceutical industries for valid reasons. For instance, if you watch the documentary titled “Burzynski”, you’ll notice how a board member of the FDA have expressly stated that they will not approve any drug not created by a corporation and that the organization at large refuted and tried to indict him at same time as plagiarizing his work and publishing a dozen patents of their own under the same neoplaston umbrella. The reason that Burzynski can operate today is because he won a court case that overruled the indictment and finally approved his first patent – a decade after it was originally created. The Medical and Pharmaceutical industries make money off of expensive treatments that they mark up the prices for – Burzysnki may also be making large profits, however you and I don’t have evidence and it’s a moot point when everyone else is doing the same thing. One would think that if one of these pharmaceutical companies actually developed a viable cure for cancer (a simple drug of some sort, perhaps) that they would be instant billionaires. The truth is, they already are billionaires, and are heavily invested in the current oncological treatment resources such as chemo and are probably content to continue on that way without messing up their investment. Whether or not there is a cancer cure out there, people are not “crazy” to have their doubts about the virtues of radiation.
Second, and most importantly – YOU NEED STATISTICS to back up your information otherwise it is useless. You are criticizing Burzynski for using anecdotal success stories and backing up your argument with the same tactic. You like to use instances where you don’t know the outcome of the patients as if this somehow still supports your argument. It doesn’t, it weakens it. You have about 10 cases of known deaths here. Add the 3 that you mentioned earlier and you get 13. Now if we are talking about a clinic that has been around for several years and spends 5 million as you said on expenses a year, do you think that they might have a lot more patients whose results you have not included? Lets do the math – you have about 24 patients here total, including the three that you only referenced. If on average each patient spends about 100,000 dollars on treatment, that comes out to 2.4 million in revenue. That is half of what even the annual expenses were. Obviously we don’t have the full picture here (not that I am necessarily blaming you fort that). If there is, for instance, a 2-1 ratio of success, I would be very impressed with Burzyinski’s work, largely because most of his patients have extreme forms of cancer that otherwise would sentence them to death. So 13 deaths is almost rather meaningless without the rest of the statistics – he never advertised his treatment as a 100 percent success guarantee or your money back.
On a last note, I do think you have established that there is a deeply serious risk involved in this treatment (and perhaps any other as well) and that the absurd expenses involved may make it a poor choice if you can get insurance to cover a more mainstream approach. In conclusion, I believe your presentation is flawed, but there is valid information in there that should definitely be taken into consideration by anyone promoting this type of treatment or looking for treatment themselves.
Also you should take it easy on the snarky jabs when replying to your commenters, it won’t fix the holes in your argument.
Chris, thanks for your thoughtful comments. It’s often hard to have a discussion.
The idea behind the record I compiled is to look, somehow, for an unbiased sample. I had the suspicion that Burzynski’s movie was presenting his strongest few (3) cases. I wanted an unbiased sample. So I went to look at who had appeared in the international news media to see who had mentioned that they were going to Burzynski’s for treatment. And I included everyone, even patients who lived and whose outcomes were unknown, because that’s the honest thing to do. I should mention that I found 14 other patients to report on (https://skepticalhumanities.com/2011/11/26/stanislaw-burzynskis-public-record/) including the 13 you are talking about here. Again, the selection criteria were only that they had appeared in the paper, almost always begging for money because they could not afford his treatments. But that was it. And what I got was a death list, not one that inspires hope.
Regarding the speculation about the growth speed of tumors and possible appropriateness of radiation….It would be irresponsible of me to have an opinion of that.
Over and over, people invoke fat-cat Big Pharma execs. This is a bit of a red herring, however, because even if it were true that Big Pharma/government/whoever were deliberately going after Burzynski to protect profits (I’ve seen no compelling evidence that’s the case-only the story told over and over again by B’s supporters), even if all of those conspiracy theories are true, he still hasn’t published the results that would allow him to make the claim that he has a viable treatment. Indeed the studies that have been published, usually in not-great journals, have historically been fraught with extreme methodological errors. Independent reviewers who have reviewed his studies have found:
There full findings are a chilling read. I encourage you to follow the link above.
Regarding the math bit: “You like to use instances where you don’t know the outcome of the patients as if this somehow still supports your argument. It doesn’t, it weakens it.” I don’t. I don’t know what happened to them. It doesn’t hurt nor help my case because it doesn’t say anything useful for people looking to interpret Burzynski’s claims. I leave it at unknown. And I included it so you would know that I was being as straightforward and complete as possible.
The important bit about your numbers argument is that, if Burzynski had ever published his clinical trials with his huge numbers of patients, then we could have a really authoritative discussion about the data. But he hasn’t done those studies. This is why I keep stressing why he needs to publish. I’m not assuming that ANP doesn’t work and looking for evidence to back that position up. (I’m starting with the “null hypothesis.”) I’m waiting for him to give us the data that proves he’s got something…because I WANT ANP TO WORK. But if you are going to promise me the world, you better give me tons of the best possible evidence, which he hasn’t. If you are promising me even a chance that ANP is going to work, you better give me good evidence. He just hasn’t. Really, by saying we don’t have evidence to have this part of this discussion, you’re telling me that you want the same studies that I do! 🙂
The problem is that when someone invokes a huge conspiracy, they are making their story all the more complex and unnecessarily so. I’m simply starting with the premise that his claims need evidence and that I’m not assuming it works, though I’m willing to be convinced by good data. He has failed to produce that, and I am still not convinced. The person on the other side says, “He has cured people and there is a huge conspiracy of government, drug companies (who have different, not mutual, interests) and they are all ganging up on this guy to protect their profits.” You need to produce a LOT more evidence to prove that proposition than Burzynski does to prove to me that he has something. You need, to be convincing, not only the studies that I need, but a whole lot of other things, like a document trail and evidence that drug companies and the FDA have colluded to hurt the guy. Give me those, and I’ll be willing to consider your position seriously. I’m just merciless about evidence. That’s all.
RJB
Hi Chris, just butting in :). You would be impressed with a 2-1 success rate – so would I. All we want is Dr B to publish and we could find out. On his website there are a couple of old “success” stories and no failures. Taking just brain cancer in children, in the UK (where I am), in the LAST YEAR alone, I noted the tragic cases of Zoe Lehane Lavarde, Billie Bainbridge, Supatra Adler and Luna Petagine. All their families raised the 6-figure sums Dr Burzynski requires, all took the trip to Houston, all were initially hopeful, and none have survived. None are mentioned on Dr Bs website. Why not?
My name is Josh Vukich and I see you mention a snippet about my sister in your blog (Mary the 11 year old). I just wanted to tell you that she’s almost 20 now and has been completely cancer-free since 2004. Her recovery wouldn’t have been possible if it wasn’t for God’s divine intercession and Dr. Burzynski. I know you (and some of your readers by the looks of some comments) are skeptical of him but I can tell you first hand the man is NOT a fraud and certainly is not a quack. I was 10 (now 23) at the time my sister was diagnosed with 6 brain tumors and I remember how much time and effort my parents put into caring for her. I also helped with her physical therapy since her whole left side was paralyzed. I know you probably don’t have much faith in the man since you mention some people who have died (our family knew the woman you mentioned above my sister Eunice) but honestly if you want someone to direct your outrage towards it should be the FDA…why? Because for so LONG they have tried to shut him down because he goes against EVERY treatment that the FDA endorses. My sister NEVER had any chemotherapy or radiation because my parents were both nurses and they KNEW those treatments would’ve KILLED her. I’m not saying you are dumb, retarded, full of bs, or anything like that cause everyone is entitled to an opinion but I would recommend that you watch the documentary Burzynski:Cancer is a Business. In that documentary you will learn exactly why the FDA is so full of crap they shouldn’t really be allowed to exist because they are the ones who decide the fate of many people as to whether or not they can get treatment from him. It blew my mind and it still blows me to this day that the FDA has tried to screw him over but have unsuccessfully done so. The info you will see in that documentary might enlighten you about the man because he is a very genuine human being and his heart is in the right place because he can CURE people but the FDA, Big Pharma, ACS and the Cancer Research Institute all hate him and his work. In fact the CRI purposely screwed his formula in FDA trials just so that it would make him look bad and he knew they were full of crap (mentioned in the movie). Overall, all I can say is this, never give up hope and always always search for the truth. My sister is living proof of the man’s treatment and I thank God every day she’s still alive.
Josh, it is wonderful to hear from you and I am very, very glad to hear that your sister is doing well. As I think you recognize, I think that we all have the same endpoint: more survivors. Your family must have gone through a world of shit, and I’m delighted to hear Mary is in college.
I’ve been tracking and keeping an eye on the Burzynski case for about a year now. I think I can correct a few things that you are saying about the treatment, and would be happy to explain why even though patient testimonials are compelling emotionally, they are not very useful in establishing efficacy (efficacious treatment is how we’re going to get more survivors).
1) Antineoplastons ARE chemotherapy, specifically, sodium phenylbutyrate. It’s a drug. In fact, it is a metabolite of another drug known since the 1940s. The full story about these is outlines at oncologist David Gorski’s blog at Science Based Medicine. So, yes, your sister had chemotherapy, no matter how B described it as “natural” or “replacing something that she was lacking” or “not chemotherapy.”
2) The FDA is in a strange position because they are there to serve both the public and private (business) interests. These two missions often come into conflict, as they did in the Burzynski trial. During the trial, the FDA was designing test protocols with him. When prosecutors came to them for help prosecuting Burzynski, the FDA had to make a decision, do they help the prosecutor for a case about business practices or do they stick with the researcher. This will stun you, but the FDA BACKED BURZYNSKI. They left the prosecutors hanging! Of course, the trial that they were designing fell apart, as have countless dozens of other studies B has done, even though people have offered to help him design studies for free. (You’ll notice that this isn’t mentioned in the movie.)
I do think that the FDA should be broken up into two units, so that there are no more conflicts of interest. One branch that protects patients/consumers and one that promotes business.
3) My last point and one that I am certain will be one you won’t easily accept, but it remains the foundation of all medical research whether you believe it or not and your should hear it. Anecdotes are not good evidence of efficacy, for a number of reasons. Instead of rehashing things that I have said dozens of times, please take a look at my explanation to another supporter of Burzynski. Read that before you continue reading here, please.
So, that should make it clear why the patients’ stories–no matter how many of them step forward to vouch for him–aren’t as good as a single Phase III trial. Before the scientific vetting and research standards were in place all sorts of things were promoted as efficacious and were TRULY thought to work.
When you look at Burzynski’s survivors you are seeing a very slim percentage of the total outcomes. (He’s treated thousands and thousands of people with his chemotherapy over the years.) That group is not representative. It may well be that ANP is efficacious on brain tumors, and if it is, I want to know it. The world wants to know it. He needs to do the clinical trials. Then he will receive the Nobel Prize. Really. I tried to get a sample that was not determined by outcomes by looking at the press–and I put up everything I found, including survivors. I’m being honest.
But my sister lived! you are thinking. I know. You saw the before and the after and are making an inference from there. There are any number of reasons why she may have lived, whether they be ANP or an initial misdiagnosis or some other factor. But conviction, the sense of possessing knowledge is a feeling, an emotion, and my experience is that when logic and emotion duke it out, emotion always ALWAYS wins. It’s an older part of the brain and is deeply intertwined with how we perceive the world at the most fundamental level. In order to verify what we feel is working, we need to test it, and he just doesn’t.
I work with conspiracy theories professionally. Going to teach a college class on them in 1.5 hours. I’ve met dozens of people who have believed in them, many ideas so ridiculous that we’d just laugh together about them and marvel about how these people justify their beliefs. But at the root is emotion, and I have never, not even the most ridiculous Nazi-UFO conspiracy theorist, convinced another one that they were wrong. If you perceive that the FDA, “Big Pharma” (an imaginary characterization of a complex industry of businesses in competition with one another, not working in lockstep) and other players with different interests, the chances are small I will dissuade you of that notion. However, I need to point out that not only are you telling me that he has a cure for cancer (and making that claim take on the burden of proof for demonstrating that), but that 10s of thousands of people are all working actively against him. You’ve made 2 extraordinary claims, both of which have to be proved. So we have 2 possibilities: there is a cancer cure and vast resources are being expended to suppress it or, and this looks exactly the same from a patients’ point of view, that one man is lying. One is soooo much more plausible and by applying Occam’s Razor, that the hypothesis with the fewest number of assumptions is to be preferred, I have cast in with the latter.
BUT YOUR SISTER LIVED. I know. But please try to come at it from my perspective. I want ANP to work, but he hasn’t met the basic minimum standard to convince me that it does. A single phase III trial of efficacy that is replicated by someone independent.
If you are interested in a second opinion about Burzynski’s movie, check out Gorski’s blog again.
Thanks for listening and understanding that I am not a monster for disagreeing with you.
“The FDA is in a strange position because they are there to serve both the public and private (business) interests.”
No part of the FDA should exist to protect business or foster business. The existence of the FDA should be for a single goal: to ensure that drugs and food items provided to the American people on the market are healthy and safe. Unfortunately pharmaceutical companies have infiltrated the FDA and this is partly why Burzynski’s clinic was so heavily targeted.
Bob, I know you say you’re an educator so I assume you remind your students that all research, no matter how prestigious, needs to be considered VERY carefully because data & statistics can & are manipulated. The scientific & medical world are NO exception to this. In hospitals EVERY day, oncologists conduct experiments on LIVE patients that are NOT single Phase III Trials but ‘trial & error’ (Dr. David B. Agus; Prof. of medicine & engineering, The University of Southern California Keck School of Medicine amongst many other positions. Dr. Agus has an oncology fellowship from Sloan-Kettering Cancer Centre). The observations made by these oncologists don’t make it to medical journals or data sheets. People such as yourself, whilst purporting to be doing society a favour, (just in case you notice the spelling; I spell in English not American) are so tunnel visioned they don’t seem prepared to even research the modalities they are endorsing.
‘When you look at Burzynski’s survivors you are seeing a very slim percentage of the total outcomes’. (Bob)
I’m interested in your quote here Bob…many times it has been pointed out to you by various bloggers on this page that the ‘slim percentage’ is probably due to the fact that the majority of patients go to Burzynski because they have tried (unsuccessfully) mainstream cancer treatment. By this time, their bodies are weak, disfigured & often irreparably damaged. Time & time again (just like a politician) you have chosen to ignore such comments. Josh’s sister is one of the ‘slim percentage’ probably because her parents were astute enough to avoid the havoc caused by chemotherapy & radiation therapy.
Lets go back to your reliance on data & statistics because of course we expect information like this to be reliable. As I have stated in my previous blog, I have cancer. I have survived this condition for well over 5 years (this is the measurement of time quoted in all medical data that Bob would be relying on). Due to the prognosis of the cancer I have, the cancer specialists I consulted expected me to have died 3 years ago. In fact many people I came to know who had the same diagnosis as me but followed mainstream cancer treatment are now either dead or suffering immeasurably. HAD I chosen Chemotherapy &/or radiation therapy I would now be considered statistically as “cured” EVEN if I died the day after this 5 year marker. However, despite my diagnosis; despite the dozens of scans etc that show categorically the diagnosis I received was accurate, I don’t appear on ANY data base collated here in Australia regarding my physical health with the cancer. Why? Because I chose NOT to embark on any of the mainstream cancer therapies. How then can statistics reflect accurately the cancer picture. The cancer picture is not honest. I can only ever be “anecdotal” evidence because I am of no interest to the medical statisticians. My success (& the thousands of others like me) would beg many questions of the current model of cancer treatment. How can this be morally right Bob? But of course you are right Bob aren’t you…’emotion ALWAYS wins’. After all, had I taken notice of the statistics & followed the advice of my (well meaning) specialists, in all probability I would be dead. But, my emotions won…I’m STILL alive!
Just before I finish Bob, whilst I’ve raised the issue of morality. I have a question for you & other bloggers….Do you think it morally right that patients are NOT told of long term side effects of cancer treatments? Is it possible for patients to make “informed decisions” if they are not aware of ALL the major side effects that are possible as a result of a drug/treatment?
To give a real example…& please bloggers, feel free to quiz the next Radiology Oncologist you meet about this…If a person has radiation treatment to the breast for example, they are likely to suffer heart damage, weakening of the bones, damage to the lymphatic system, a MUCH HIGHER chance of further, much more aggressive & virulent cancers (Usually between 5-10 years post radiation treatment – Bob you’ll be pleased to know there is medical data to verify this) & damage to areas of the lungs; & yet this is rarely voluntarily divulged to patients. What a patient is generally told is that they may experience “temporary burns to the skin & fatigue”. This is all that is mentioned in the literature patients are given or conversations with specialists. If a patient doesn’t know to ask specifically, they won’t, in general, be told. Shouldn’t people also be warned about the other likely symptoms too? These Bob, are some of the reasons I suspect Josh’s parents declined conventional treatment. They were obviously more informed (& experienced) than you are.
If Bob you are going to level the following at Josh, “But my sister lived! you are thinking. I know. You saw the before and the after and are making an inference from there. There are any number of reasons why she may have lived, whether they be ANP or an initial misdiagnosis or some other factor. “… then you have to accept that it is VERY possible that the reason patients died having had Burzynski’s treatment is “any number of reasons…” previous mainstream treatments for example!
Bob we do recognise that you are not a monster but please take your head out of the sand, open your eyes!!! Why pick on one individual (Burzynski) & not on the FDA who endorse & promote cancer treatments in mainstream medicine that damage, maim & kill people. Mainstream kill FAR MORE people & the question still remains….Of the patients that died under Burzynski, what percentage of them had ONLY received his treatment & no other form of treatment? You can’t accuse him of being a fraud unless you look at the percentage of these patients. If you haven’t got this information then you are not basing your conclusions on anything concrete are you? Bob, you keep telling us you are the educator!
Josh, I’m glad that your sister is an anecdote even though Bob dismisses them. I would rather be ‘only’ an anecdote than a dead cancer statistic.
By the way Bob, using the excuse of ‘misdiagnosis’ is a lame reason to level at something you (& the medical profession) aren’t able to explain & is almost as offensive as using the word ‘anecdotal’ when you or the medical world can’t explain an outcome.
Hey, KC. That was a thoughtful response on your part, and I hope to do it justice here:
“I assume you remind your students that all research, no matter how prestigious, needs to be considered VERY carefully because data & statistics can & are manipulated.” Yes, I do remind my students that they need to be careful when they work with data/statistics. In fact, I teach them lessons out of “How to Lie With Statistics” to alert them to possible tricks. But I disagree with you when you say, “all research … [is] manipulated.” That is a huge claim that is tantamount to “never trust medical data.” Last week, on Virtual Skeptics, I reported on what seems to be a rash of data faking in biomedical science, as suggested by retractions. But what I learned was that only 8/1000s of a percent of papers that appear in PubMed have been retracted. That’s a squeaky clean record by any standard. (I understand that not all faked data is likely to be picked up on or even retracted if detected, but there it stands.)
Your next statement is unrelated to the first, but is interesting to consider. You say that oncologists are “experimenting” and in a sense you are correct. When someone, say, like my roommate, presents with migraines, doctors try a variety of interventions that have been demonstrated to have specific rates of efficacy in clinical trials (though there is some room for off-label use of treatments occasionally). Treatment is always negotiated between the doctor and patient, and will depend on a variety of factors, including the doctor’s experience, the patient’s desired outcomes weighted against the types of treatment that the patient is willing to endure, etc. But we can’t say with certainty whether or not a treatment will work yet for many diseases. Now, later in your post you say that patients are not being told about the long-term side effects of chemotherapy. I don’t have evidence one way or the other of that. A doctor has a responsibility to fully share the possible treatment outcomes. This is the principle of informed consent. That is sacred. (I should mention, this is one of the ethical violations that has put Burzynski’s medical license at risk.) At the same time, I don’t know how a simple description of chemo’s effects on the body can fully convey the magnitude and unpleasantness of the experience of chemo. It’s always going to be worse than you expect, I think.
I don’t know anything about your experience or decisions or diagnosis. I am very glad that you are alive, for whatever reason that may be. What are the survival rates with no intervention?
When it comes to the “slim percentage” argument, I am approaching it from a certain angle. First I’d ask you to listen to the first segment from radiolab, about a study of cats falling out of very very high windows: “http://www.radiolab.org/2010/sep/20/taking-plunge/” Next, I listen to Niel de Grass Tyson’s objection to the study, which is eye opening (at the end of the show): http://www.radiolab.org/blogs/radiolab-blog/2010/nov/29/vertigo/. Once you listen to this, you will understand why the data you examine needs to be as inclusive as possible.
Now, when you say that perhaps Burzynski’s patients are weakened by chemo and/or radiation. Well, maybe. But we don’t know because his “trials” are so badly set up. According to Howard Owzer, the director of Allegheny University Cancer Center in Philadelphia, a clinical investigator with Eastern Cooperative Oncology Group, former chairman of the biological response modifiers committee and executive committee of Cancer and Leukemia Group B, who went on a site visit and was not compensated, reported:
We can’t know if it was the chemo or the lack of efficacy of ANP. In my opinion, it is unethical for Burzynski to leave that very basic, very important question hanging and still to profit from research. When you say I can’t call him a fraud unless I know this information, well, in a sense, yes. But he’s telling me that he has a freaking cancer cure. The magnitude of that claim demands that he provides properly collected evidence to demonstrate that claim. Until he does, and he hasn’t for 30+ years, I work from the same assumption that all science does, the null hypothesis, that it’s not a cure until it is demonstrated. And it’s not. And the 30 years strongly suggests that he is a Fraudy McFraudypants.
I can’t help if you are offended by anecdotal evidence being anecdotal evidence. As has been said a million times, anecdotes are as compelling as they are unreliable: very. There is a very good chance that Burzynski is taking credit for the effects of chemo/radiation, which can work even after the treatment stops. And misdiagnoses happen. Spontaneous remissions happen. I have no more basis to rule those out than you do in the absence of data.
I hope this clarifies things.
RJB
Bob, that’s very clever…twisting what I say. I DID NOT say ALL research is manipulated. If you read what I said it clearly says that ALL research has to be considered carefully. That is VERY different. What I pointed out, as you point out in your own response, was that data can & is manipulated. It is something for people to be aware of. My text never did say, “never trust medical data.” Your response is EXACTLY an example of how data manipulates peoples ideas!
I think migraines fall into a very different category in terms of safety for the patient than cocktails of chemotherapy drugs. So in my view, this is a very weak comparison choice.
You point out that “Treatment is always negotiated between the doctor and patient, and will depend on a variety of factors, including the doctor’s experience, the patient’s desired outcomes weighted against the types of treatment that the patient is willing to endure, etc.” Yes, i agree with this to an extent but I’m not sure this is absolutely accurate and brings me back to the point I made further into my blog response regarding “informed consent”. I urge you Bob to do your own small scale studies on say 100 cancer patients who have experienced rounds of chemotherapy etc & see what they have to say in regard to the depth & revelation of “informed consent.” For example, lets take a simple biopsy. This process can & does contribute to cancer seeds spreading so there is a risk. This is not stated on the consent form a patient has to sign. If, as a patient you are unaware of this, are you signing a form fully informed? Lets take another example; mammograms. If you have an existing tumour but are unaware of this, the pressure of the mammogram can rupture the tumour releasing cancer seeds. Are patients made aware of this? No! In a recent study conducted at UCLA’s Jonsson Comprehensive Cancer Centre Department of Oncology it was discovered that radiation treatment does in fact kill at least 50% of breast tumour cells per treatment (hallelujah!) BUT, hold on… it transforms other tumour cells to cancer stem cells. (Yikes! These are far more treatment -resistant.) The ‘new’ cancer cells re-programmed themselves to fight back against radiation treatment. Are patients made aware of this? No! So what do you define as “informed consent”? These are just a few examples of how the cancer industry is not completely honest with the public. People do need to have trust in the medical model available to them Is it any wonder though that people also turn to ‘alternative’ therapies. And I would advise that the same caution is given to those modalities as mainstream medicine. A patient needs to make their own informed decision. Lets move away from cancer…lets look at swine flu. There is growing evidence that links swine-flu to narcolepsy, particularly in the under 18 years of age recipients of the vaccine. Are there moves to remove it from the shelves as a precaution whilst these findings are collated? No & yet people are being affected. Are parents informed of this possibility? No! I teach a child who had the swine flu vaccination. Approx’ 6 weeks post this she developed narcolepsy & has gone on to develop epilepsy. Coincidence? Who knows? Would the parents have consented to the vaccine had they known of these growing concerns regarding this link? I don’t know but I would certainly have thought twice about it. Would you Bob? So, as you say, informed consent should be sacred but in reality I’m not convinced that it is. Which is sad because it goes against everything you are trying to achieve through your site, information – which I applaud.
With regard to survival rates for my condition having not undergone mainstream treatment. Sadly I can’t answer that Bob the reason being that I am considered “anecdotal” & therefore like the many before me, we don’t figure in any statistics & that is precisely what I mean by the cancer statistics not being “honest”. This is also the reason that some of your very well intentioned comments are also not based on concrete evidence. This is why I ask people to be mindful of the statistics they read. What is left out of data presented to consumers can sometimes be as important as the data that is revealed…but not to certain groups within the cancer industry.
I can’t argue with you regarding the validity of the trials Burzynski sets up. I haven’t visited their labs or seen any data or documents regarding this. What I can tell you is that there are copious documents (autopsy reports, studies, science journal articles etc) that reveal that mainstream medical treatments kill patients MORE OFTEN than the cancer that they presented with. But this is never questioned. In my opinion, to keep performing treatments that show, decade after decade, very little improvement in statistics is unethical. Between 1950 & 2007 there has only been an 8% decline in deaths due to cancer (2007 Morality Data – National Centre For Health Statistics, Centers for Disease Control and Prevention, 2010 this is US data found at http://www.cdc.gov) …not much improvement as far as I can tell! I wonder too if this slight improvement is due to earlier diagnosis or treatment given?
Academia can sometimes be very blinkered if it doesn’t get into the real world amongst the realities people have to face on a daily basis with regard to important issues such as life threatening diseases. What makes sense on paper can not always be translated into the real world. I accept your stance on anecdotal evidence & I agree, there is room for many variables in these stories HOWEVER…anecdotals (like me & Josh’s sister) have no choice but to remain anecdotes! The way the economy is built around the medical industry prevents studies being made on people like me or my records to be studied to look at variables, trends etc. I have offered myself up for study. I have been turned down. Why? I was told no one would fund a study on people like me because there is nothing to be gained financially for the pharmaceutical companies (who tend to finance medical studies) however…it is humanity that should be the beneficiaries of such studies NOT the pockets of the cancer industry…& lets face it Bob, the industry is HUGE! What i’m trying to point out Bob, is that some aspects of the cancer industry is as warped (& faudulant) as you are accusing Burzynski to be…WAKE UP!!!!
Sorry. The sentence is not entirely clear on a casual reading. Regardless, if you are saying that a study is faked, then it is up to you to show that. Like how Brian Deer hunted down the fraud of Andrew Wakefield.
I wasn’t talking about “pleasantness” of a treatment. I was comparing the method, which is the same regardless of whether it’s migraine, cancer, or depression. Trial and error, playing with the probabilities. The analogy is brilliant. 🙂
Vaccine scares are mostly a non-starter here. If there turns out to be a link, the articles I have quickly glanced at give me the impression that any “link” (not necessarily implying causality at this point), but I see nothing that suggested that the people giving the shots were aware of a risk. Or that drug companies were…. So, yeah, the phase IV study is a follow up of outcomes. That’s part of the study cycle.
I’m sorry I can’t get keep going into this, as I still have other work to do before I retire tonight. And I’m not going to convince you that you might be wrong, so, why bother, eh?
Best of luck. I do hope that you remain well and can get into a study. I think it would be illuminating.
RJB
No worries Bob…I don’t have time for this either…I don’t need you to convince me of anything anyway & wasn’t aware I was seeking that! I just don’t like the way you dismiss peoples REAL experience. (Josh’s, his sister, mine… there are probably others too). That’s the trouble with science…it is closeted, stifled in its own specific paradigm & in real life things don’t work in boxes which is why i’m saying you can’t dismiss peoples real experience. I acknowledge there’s a needed role for science & medicine…Jeez, i’d be foolish not to however sometimes balance is lost which is what I think I was highlighting.
I wasn’t talking about pleasantness of a treatment either. I was talking about comparing like with like. Which is what a good study should do to rule out variables…but you know that.
Anyhow, yours is the first blog I’ve ever contributed to. Thanks for the discussion.
[…] More patients whose deaths Burzynski has presided over… […]
Dear all
I noted poor Rowan Baker’s site as she was mentioned by Mr Saunders (Amelias Dad, who spoke to Rowans parents as they were both Burzynski targets^H^H^H^H^H^Hpatients). Rowans parents had a justgiving site and an account at:
http://rowanbaker.weebly.com/index.html
Her story follows the usual tragic patter, with the obligatory “the tumour is shrinking” message from Dr D’s clinic (top p2 of the above site) in 2012.
“THE TUMOR HAS FINALLY SHRUNK!!! […] Late this afternoon, I received an e-mail from Rowan’s main doctor at the Burzysnki Clinic. She included the clinic’s radiology report which stated that Rowan’s original tumor has diminished in size by 36%. The tumor in the prior scan measured 2.5 cm x 1.5 but is now measuring 2 cm x 1.2 cm. This is miraculous news for us. We are all ecstatic. We know this is the beginning of her cure. We thank all of you for your prayers! God is listening and he is guiding Dr. Burzynski as he cures the incurable. This is all I can write for now.”
[…]
“Dr. Burzynski also reviewed the scans and was pleased with what he saw. His response to this development is to increase Rowan’s dosage and hit the tumor more aggressively”
But a year or so on the tale comes to the usual bitter end:
“Rowan died on May 18, 2013 at approximately 12:15 p.m. at the CHUS Hospital Fleurimont in Sherbrooke, Quebec. We never made it to St. Anne de Beaupre’s shrine.”
The picturs and suffering of Rowan are heartrending,
Poor Ms Paniagua published an upbeat message about Amelia Saunders on Rowan’s justgiving site (with no subsequent news as to her sad fate, but they closed the appeal I think) https://www.giveforward.com/fundraiser/6f91/rowanscancerfund/updates/12409
This account also shows the pressure desperate parents will put on politicians.
Bob your politeness is amazing. Frankly the sort of “arguments” being presented here are the sort of arguments that woo merchants have been using for 100s of years. As for dismissing people’s real experience. Well anyone with any experience in medicine knows that anecdotal evidence for “cures” is not very good evidence for anything. The fact is Dr. Burzynski has been siting on supposedly decades of studies of thousands of patients and as published nothing that isn’t flawed and laughable as a study of outcomes of his treatment.
He is using the loophole of doing “studies” to rake in the dough, and has sat on the results for decades. Why should it be a surprise that a lot of people find this dubious in the extreme. I’m also not impressed with finding out that Dr. Burzynski company has expenses and no income. Talk to an Accountant about how that raises red flags. I note that in the end the critics you have are distrustful of science.
This comment is just so annoying I’ve heard similar from believers in Alien Abductions and Satanic Ritual Abuse, and on and on:
“I just don’t like the way you dismiss peoples REAL experience. (Josh’s, his sister, mine… there are probably others too). That’s the trouble with science…it is closeted, stifled in its own specific paradigm & in real life things don’t work in boxes which is why i’m saying you can’t dismiss peoples real experience.”
[…] You might remember last year how people who thought they were acting in the interests of the Burzynski Clinic issued quasi-legal threats to bloggers who took issue with his unproven “antineoplaston” treatments. I am specifically thinking of Marc Stephens, who contacted Andy Lewis, Peter Bowditch, and Rhys Morgan. As I understand it, Burzynski had hired Stephens to do web-optimization work, cleaning up B’s reputation (no small feat considering who was signing the checks!). Stephens apparently interpreted this as a green light to send a high school student a picture of his house, the unmistakable threat: “We know where you live.” This was when I first wrote about Burzynski, I believe. […]
What about all the deaths that the pharmaceutical companies cause?? You cannot survive if your killing your immune system.
In agreement with KC. Read the vaccine inserts, the ingredients and adverse reactions right there for all to see. Protect your families. Animal DNA, formaldehyde, aluminum, etc. etc. surely isn’t good for the human body.
Any first year pharmacological student will point out that the matter of toxicity depends on the nature of the substance and the dose. Your body produces, uses (as part of metabolic processes), and dispenses with hundreds of times more formaldehyde every day than are in a single dose of vaccine. So that’s a nonstarter.
Regarding your statement re chemotherapy, even if what you say is true, that pharma is corrupt and destructive and hurts people…that does not magically make Burzynski’s treatment safe or useful.