This will be an uncharacteristically short (for Orac) post.
A couple of months ago, I wrote about the sad story of a young man from Ireland named Seán Ó'Laighin diagnosed with an inoperable brainstem glioma at age 19. Even more sadly, this young man heard about the Burzynski Clinic in Houston and believed the claims of its founder, Stanislaw Burzynski, that being treated with antineoplastons would provide him with a much greater chance of survival than anything conventional medicine had to offer. As has been the case for so many patients of Stanislaw Burzynski, Seán and his family started fundraising, and they were quite successful at it, raising over €120,000 to send Seán to the Burzynski Clinic. His trials and tribulations were chronicled in a special that aired on Irish television in late December, Tar éis na Trialach (“After the Trial”), which was a moving personal portrait of Seán's battle with his deadly disease. Particularly memorable were the scenes of Seán sitting in his wheelchair at at the hurling pitch watching his former teammates practice, vowing to be able to play again. Before his diagnosis, he had been a strapping, athletic young man and a talented hurler.
Tragically, Seán will never again rejoin his teammates on the hurling pitch. I've learned from trustworthy sources that last night he passed away in the presence of his family. This seems to be confirmed by a perusal of his Facebook page, where there are multiple expressions of grief and condolences posted to his wall. It's been approximately two years since his diagnosis, at the outer range of what the doctors predicted his expected survival to be.
Brainstem gliomas like the one that took the life of a promising young man like Seán O’Laighin are horrible, horrible tumors, and it's true that modern medicine doesn't have much to offer. However, Burzynski has even less to offer and lots of potential harm to cause. Propagandists like Eric Merola and Suzanne Somers, whose movies and books tell them that Burzynski is the only hope, that he's "curing cancer" that conventional doctors can't cure and are being persecuted by the medical profession for it because, apparently, the government, big pharma, oncologists, and surgeons prefer money to saving lives. Families drain their bank accounts and go into incredible fundraising frenzies because they believe that it's the only way they can afford what Burzynski offers. However, propaganda all over the Internet tells them that Burzynski is the only one who can save their loved ones; so they gladly pay the hundreds of thousands of dollars, Euros, pounds, or whatever currency is used in their home country to make their way to Houston. They then come home and endure nearly 24 hours a day of infusions of salt-rich antineoplaston mixtures, with the potential for serious complications. From what I've learned, I note that if they qualify for one of Burzynski's dubious clinical trials, they get antineoplastons, paying exorbitant "case management" fees while Burzynski represents them as getting the antineoplastons for free. If they don't qualify, they are put on Burzynski's "personalized gene-targeted cancer therapy," an incompetently administered, simplistic, "everything but the kitchen sink" approach to mixing and matching targeted therapeutics, along with sodium phenylbutyrate, along with chemotherapy.
As I've said time and time again. I don't blame people like Seán for listening to Burzynski's blandishments. I'm not even sure that, before I knew what I know now about Burzynski, I wouldn't have been tempted to go to his Clinic had I been unfortunate to find myself battling an inoperable brain tumor like the one that killed Seán. People want to live, and conventional medicine, constrained by science and the truth, has no choice but to tell them that it can't give them what they want most of all: A long life in which they die of old age, or at least something other than their cancer. Burzynski, under no such constraints, can give them hope that they might live, even if it is a false hope. Seán's passing was, alas, inevitable, but that doesn't absolve Burzynski for, in my opinion, leading him on with false hope and abusing the clinical trials process to do it, nor does it absolve a man like Eric Merola from being Burzynski's propagandist-in-chief. While it's apparently true that Merola has a penchant for conspiracy theories and the dubious that dates back to long before he made his first movie about Burzynski, making conspiracy mongering movies like Zeitgeist: The Movie with his brother are over-the-top diversions into the world of nonsense like the "9/11 Truth" movement and One World Government conspiracy theories mixed with garbled, sloppy points about the origins of Christianity. Merola's Burzynski movies are advertorials, infomercials designed to lure patients into the maw of the Burzynski machine.
Seán Ó'Laighin didn't deserve what happened to him. Unfortunately, through a combination of hype, false hope, and the extraction of large sums of money Burzynski made a fate that was more than awful enough even worse.
The sad part is that the only thing one can hope for is that someone will finally sue the clinic out of business, or at least to Tijuana. Our regulatory mechanisms seem to have completely failed.
Very sad news. I have nothing but sympathy for Sean and his family and friends. Burzynski, on the other hand, makes me wish I believed in hell because he belongs in the 10th ditch of the Malebolge (http://en.wikipedia.org/wiki/Malebolge)
Mu, I think that because regulators have failed, it is up to the public to take charge, step up, and be emphatic about what that place is about.
So sad and so frustrating that the ghoul Burzynski is still plying his trade.
Orac, the Facebook page for Sean O'Laighlin that you linked to, no longer has any references to his death and messages of condolences.
If, in fact, his family has seen Orac's post and is lurking here, I would like to state that Orac, other science bloggers and those that comment about Burzynski's *treatments* are not your enemies. We are attempting to dissuade other cancer patients from seeking out *miracle cures* at the Burzynski Clinic. Burzynski is a charlatan who offers false hopes to cancer patients...his *treatments* are bogus...and he is a predator.
I'm not sure what facebook page you're looking at but I still see many messages of love and condolences there.
I believe his page is set to a limited profile. Logging in will show the wall posts expressing condolences.
@ MedTek: I opened the link that Orac provided in his second paragraph...
"Tragically, Seán will never again rejoin his teammates on the hurling pitch. I’ve learned from trustworthy sources that last night he passed away in the presence of his family. This seems to be confirmed by a perusal of his Facebook page, where there are multiple expressions of grief and condolences posted to his wall. It’s been approximately two years since his diagnosis, at the outer range of what the doctors predicted his expected survival to be."
Could you provide the link to another Facebook page, where you found those messages of love and condolences?
I believe eNOS is right, if you're not logged in you may not be able to see the wall posts.
I just clicked on the link, and there are now even more messages of condolences than there were several hours ago, the most recent being only around 15 minutes old.
My heartfelt condolences to Sean's family and friends, from someone who has also lost a loved one to a horrible glioma. May this loving family find peace.
Burzynski, however, is another matter. Here's a novel idea:
I'm so sorry.
Ta bron orm.
Thanks MedTek and Orac. I don't "do Facebook". :-)
@ Ism: I *predict* that one or more of Burzynski's *groupies* will nominate him for a Nobel Prize...sorta like this doctor of Terry Schiavo *fame*. Burzynski's P.R. department will then be using his "nomination for a Nobel Prize" to lure more cancer patients to his clinic.
@ Denice, you made me think of this: http://www.youtube.com/watch?v=k7IEefvK2GQ
Take care Ó Laighins.
The sad but familiar tale. Burzynski "offered the hope of a cure" which local doctors would not. Rather like that wretched rag "What Doctors Don't Tell You", the reason the doctors would not offer hope of a cure was that there was none. For some reason Burzynski seems to believe that hope-as-in-wishing is an acceptable replacement for realism. I know of no oncologist who would deceive patients like that. It is simply cruel. And it's even worse that Burzynski the noncologist capitalises on the pessimistic but supportable prognoses of real oncologists to claim that he has somehow succeeded because people live a month or two longer than the average stated by oncologists.
There really are no words to describe how sick this is.
"believed the claims of its founder, Stanislaw Burzynski, that being treated with antineoplastons would provide him with a much greater chance of survival than anything conventional medicine had to offer."
Basically, this makes Burzynski a class-one bastard.
How the fuck is that guy still alive? Seriously .... how?!
Guy Chapman sums up my feelings perfectly. I'd like to think that Burzynski wouldn't get away with doing what he does in the UK. Can someone reassure me that that is the case? I'm at a loss to understand why he is allowed to continue with what he does in the USA.
My condolences to Seán's family. It's the worst thing in the world; to bury your child.
Ar deis Dé go raibh a anam.
Sleep tight Sean. We'll continue the fight against charlatanry with you in mind.
@Mike - We have the Cancer Act here in the UK (not in NI) that states:
The Cancer Act 1939 is an Act of Parliament of the United Kingdom passed in 1939. Its most notable provision is a clause prohibiting taking any part in publication, except under specified conditions, of advertisements that "offer to treat any person for cancer, or to prescribe any remedy therefor, or to give any advice in connection with the treatment thereof".
Quacks (and their supporters) have scads of blogs complaining about the act, claiming it forbids any new research into therapies, makes radiotherapy compulsory, and stops new treatments being licensed in the UK. They use these lies to scare people into calling for the act to be repealed, so that criminals like Burzynski can bring their "cures" to our shores without interference. Scum.
I was so hoping Sean would beat the odds.
Does it never end?
Fathach fir. Ar deis Dé go raibh a anam. Cróga, séimh, cineálta
@Guy Chapman: For some reason Burzynski seems to believe that hope-as-in-wishing is an acceptable replacement for realism.
He has a million reasons. Several million.
So glad that you've posted this article. The more that is written about this charlatan, Burzynski, the better. My brother died of a glioblastoma brain tumor in 2002 at the age of 35. Eleven years later, and it's no surprise that Burzynski is still selling his outrageous lies. Please, if you're dealing with a life-threatening illness, make sure you're being seen by experts who treat your disease each and every day at Centers of Excellence. Do your research. Caregivers - believe me, I know how hard it is to advocate for someone who is seriously ill, but you must do your homework. Use great sites like Quackwatch.com and google your physician's names and credentials. Join patient and caregiver groups online - ask questions and demand answers. And please don't believe the hype that "doctor's are hiding a cancer cure," or "they're not telling you the truth." Oh goodness, that is so far from the truth. There are wonderful practioners that dedicate their lives to finding cures. Seek these people out.
God bless Sean and his family...he is joined by welcoming angels...including my precious little brother.
Seán was my cousin, while I know your messages of condolences are much appreciated by my family.
I know that they had to try...they did everything they could to help Seán. His father and mother could do no more.
All I ask for is for my family to have a peaceful burial of Seán.
Seán was so full of joy and never stopped smiling, life can be so cruel
A tragic story, and yet hundreds of such tragic stories can be told every day of cancer patients who walk into hospitals looking for a cure and leave through the morgue.
My condolences to you and your family for the loss of Seán.
Sandrop, have you even tried to get a hold of the book I suggested, The Emperor of All Maladies?
You will learn that more people now get to live past the five years after entering the hospital with cancer than before. And certainly more than who put their trust in Burzynski.
Anon - my sincere condolences to you and your family. I'm so sorry - life can be so cruel and unfair sometimes.
Sandrop -- what is your point? That it's perfectly okay to fleece cancer patients because they're going to die anyway?
The medical establishment does that on a daily basis.
Not with this kind of brain cancer.
Sandrop, answer a direct question!
Have you or have you not even attempted to read the book by Dr. Siddhartha Mukherjee, The Emperor of All Maladies?
Then try to explain yourself as obliquely as possible for the following:
So why, Sandrop, does Dr. Burzynski get a free pass from you for charging patients lots of real cash for unproven treatments? But real doctor/scientists like Orac and Dr. Mukherjee who spend their careers writing grants and truly trying to save cancer patients get so much disrespect from you?
Why do you refuse to acknowledge that from real research that 90% of children with leukemia now get to become adults? Yet, when a family spends tens of thousands of dollars for a child to get very sick and die quite painfully because they bought into Burzynski's high sodium chemotherapy, you think that is okay dokay.
That is just bizarre.
Seriously, Sandrop, how far into Dr. Mukherjee's book have you read? Have you even glanced at it?
Not with this kind of brain cancer.
Use a full sentence. I have no idea what you are speaking about.
And if you have any evidence on that kind brain cancer, present it.
Not with this kind of brain cancer.
And when you figure out the particular type of brain cancer, provide the scientific documentation that Burzynski's treatments are better than anything else.
 x2
Oh wait... Old Scammin' Stan the Cancer Conman has never published the results of his "clinical trials".
All we know for certain is that he leaves a trail of dead bodies, devastated families, and gutted bank accounts in his wake.
@anon - Nobody here blames Sean or the family. No-one would do anything to get in the way of their mourning period, or to hurt them in this time of grief.
If you read Orac's other Burzynski entries you see that, even as a cancer surgeon and researcher, he completely understands that need to try everything to free a loved one from cancer's grasp.
Sean and his loved ones are victims, and we side with them (and everyone) who's been taken in by Burzynski's lies and false hope.
I hope, in time, that the raw, wrenching pain gives way to treasured memories of a life well lived, and of a lad who's touched the hearts of people he never even met.
@anon, I'm so very sorry for your tragic loss.
Even more sadly, this young man heard about the Burzynski Clinic in Houston and believed the claims of its founder,
With all due respect, that's your agenda, however noble it may be. The sadder part was that he contracted an incurable cancer at 19.
I realise you mean the best for him.
I wanted to add that while I may not agree with every single scientific position of yours, I appreciate you holding a spotlight to actual fraud and a skeptical eye to unproven treatments.
Finally, and I don't claim to be an expert on the alleged treatment in question (which is not considered valid by almost all medical doctors), if what happened is that this young man and his family were led down a garden path, expending their emotional energy in futile hope, and enriching this doctor's bank account, despite his seeming unwillingness to put his treatment up for clinical trials anymore (and actually follow through and do the trials) ... then that is abysmal, and my condolences for all of the good people taken advantage of.