The story of Seán Ó’Laighin, patient of Dr. Stanislaw Burzynski

Eric Merola doesn’t much like me.

Actually, no one who is an apologist for Dr. Stanislaw Burzynski, a.k.a. “Stan the Man,” who over 30 years ago unleashed antineoplastons on unsuspecting cancer patients, much likes me. It’s not surprising. As you might recall, antineoplastons are chemicals that Burzynski found in the urine of cancer patients and that (or so he claims). Claiming that antineoplastons were endogenous inhibitors of tumor growth made by the body and of which cancer patients are deficient, thus allowing cancer to grow, he embarked on a campaign to treat cancer patients with them. None of this would have been too bad if only he had actually bothered to do the proper science and clinical trials to demonstrate that antineoplastons (1) have significant anti-cancer activity and (2) have acceptable levels of toxicity. Oh, sure, he has a bunch of clinical trials listed on ClinicalTrials.gov, but virtually all of them are listed as having “unknown” status, and it’s unclear whether most, if any, of them are actually accruing. I’ve written extensively about this, beginning with a review of a propaganda movie about Burzynski, then moved on to describe how Burzynski is co-opting and abusing the concept of “personalized therapy” for cancer, and finished up by discussing how he’s also co-opting an orphan drug in his therapy.

The movie itself is arguably Stanislaw Burzynski’s chief sales tool. Entitled Burzynski The Movie: Cancer Is Serious Business, Merola’s movie was such blatant propaganda that it would make Leni Riefenstahl blush were she still alive, not so much at the blatantness of the propaganda as at the utter talentless and risibly bad film making. Basically, Merola’s a hack. Unfortunately, I also found out that Merola is planning on releasing another propaganda “documentary” about Stanislaw Burzynski later this year. Merola decided to call it Burzynski: Cancer Is Serious Business, Chapter 2 | A Modern Story:

Wondering what it is with Merola and the multiple subtitles, I had been hoping he would call the Burzynski sequel something like Burzynski The Movie II: This Time It’s Peer-Reviewed (except that it’s still not, not really, and I can’t take credit for that joke, as much as I wish I could) or Burzynski The Movie II: Even Burzynskier Than The First, or even Burzynski The Movie II: Burzynski Harder. Mercifully, I doubt even Merola would call the film Burzynski II: Antineoplaston Boogaloo. (If you don’t get this last lame joke of mine, it’s probably because you are either not from the US or too young to remember the movie that spawned that particular catch phrase. Check out the Urban Dictionary forthwith!)

As I said, it looks as though Burzynski I will be even Burzynskier than Burzynski I.

In any case, Merola named the sequel what he named it, and we can all look forward to yet another propaganda film chock full of conspiracy theories in which the FDA, Texas Medical Board, National Cancer Institute, and, for all I know, the CIA, FBI, and NSA are all out to get Merola’s heroic “brave maverick doctor,” along with a website full of a “sourced transcript” to be used by Burzynski minions and shills everywhere to attack any skeptic who dares to speak out. The only good thing about it, if you can call it that, is that I’m guaranteed material for at least one juicy blog post, at least as long as I can find a copy of Burzysnki II online, as I was able to do with Burzynski I, thanks to Mike Adams at NaturalNews.com, Joe Mercola, and other “alternative” websites.

Somehow, I doubt that Eric Merola will send me a DVD review copy when the movie is released.

Part of the reason that Eric Merola doesn’t like me, aside from the fact that I am willing to help publicize Bob Blaskiewicz’s present to Dr. Burzynski for his 70th birthday on January 23, is that I think that every so often I happen to run into stories about the bad science and unethical nature of Burzynski’s work, and I blog about it. I also run into patient stories. Although I don’t cover them as systematically as Bob does, I like to think that what I lack in comprehensiveness of coverage I make up for with my in-depth knowledge of cancer science and treatment.

So it was a couple of weeks ago, when readers started sending me blurbs about a documentary broadcast on the Irish television station TG4. Then, I was sent a link to the actual video, allowing me to watch it for myself. The television show, Tar éis na Trialach (“After the Trial”) is in Irish, but it has subtitles, and it’s very much worth watching. It’s about a young man named Seán O’Laighin who is celebrating his 21st birthday while battling an inoperable brainstem glioma. Part I of the 30 minute show can be found here and embedded below (note that part II will start playing automatically after a commercial at the end of part I):

Tar éis na Trialach is a moving (and depressing) portrait of a young man named Seán Ó’Laighin, who at age 19 was a talented hurler and nursing student with a promising career and his whole life ahead of him when he was diagnosed with an inoperable brainstem glioma. The show begins with shots of him as a boy (who really liked Eminem and Michael Jackson), as a vigorous and athletic young man, and as a student interspersed with pictures of Seán in a wheelchair, having drugs infused, his family holding fundraisers to send him to the Burzynski Clinic and, most poignantly, sitting on the sidelines of the hurling pitch watching what I assume are his former teammates practice, himself no longer able to play because of the deterioration of his motor function to the point where he has difficulty walking. We learn that the first symptom that something was wrong was photophobia and difficulty learning to drive because he had trouble coordinating shifting and acceleration. He went to Beaumont Hospital, where a workup revealed that he had a mass in his brain accounting for his symptoms, and a biopsy of the mass revealed glioma. Seán was apparently given a prognosis of surviving approximately eight months to two years, and we see a shot of an oncologist named Dr. Aengus O’Marcaigh saying:

We can contain it with chemotherapy and/or radiation, but it’s incurable because it’s too dangerous to operate.

I’m sure that regular readers know what’s coming next, and it does. We see a shot of Seán’s mother, who tells viewers:

In the irish side, all really the talk was was of containment. And then we heard about Burzynski, and they offered the hope of a cure for us. Seán was only 19 so we decided to go for it.

Next is a very familiar story to those of us who have been following Burzynski. Treatment at the Burzynski Clinic easily runs into tens of thousands, if not hundreds of thousands, of dollars. Through a monumental effort, Seán’s family managed to raise €120,000 (which at today’s exchange rate is approximately $160,000) to go to Houston; so go to Houston they did. We see the video that appears to have been taken with an iPhone camera of the family, including Seán, his mother, his brother Tomás, and his sister Deirdre mugging for the camera in front of the Burzynski Clinic, overjoyed to be there because they think that this is Seán’s best hope for survival.

Although it grated me to hear the narrator describe antineoplaston therapy as “controversial” (it’s not controversial from a scientific standpoint; there’s no evidence that it works), I give the producers credit for making it very clear that antineoplastons have never been “granted a general license by the FDA,” and calling them in a relatively dismissive tone “just a trial drug.” Also to their credit, the producers point out that Burzynski has never submitted his drug for conventional randomized clinical trials, and indeed he hasn’t. Not really. As I’ve described before, after having claimed to have discovered these magical chemicals in the urine and to have discovered that they are endogenous natural inhibitors of cancer, Dr. Burzynski has set up a lot of preliminary phase I and II trials whose results he never seems to publish in the peer reviewed literature. Instead, he likes to publish case reports and minuscule patient series in journals that aren’t even indexed by PubMed. No wonder, as the narrator puts it, the “medical profession here in Ireland are completely against it [going to the Burzynski Clinic].” Unfortunately, that didn’t stop Seán’s family doctor from agreeing to oversee Seán’s care in Ireland, which the Burzynski Clinic requires before it will let someone return to his home country under his treatment.

It’s definitely an ethical dilemma for doctors like this, because monitoring someone like Seán as he undergoes antineoplaston therapy isn’t just a matter of making oneself available in case there are problems. It involves ordering MRIs and other tests, as well as ordering blood work three times a week. I can’t help but note that if as a physician you order blood tests on a patient you are obligated to follow up the results and act on them if they are abnormal. Given that, contrary to Burzynski’s claims, antineoplaston therapy is not “non-toxic,” there’s a not inconsequential chance that a patient like Seán will end up in the emergency room and need to be admitted at some point. Then it’s up to you to fix the hypernatremia that antineoplastons cause. (I couldn’t help but note that the concentration of the antineoplaston infusion listed on the bags was 300 g/L, or a 30 per cent solution. That’s mighty concentrated stuff!

Although I knew a lot about Burzynski and antineoplastons already, what Seán’s story taught me is just how difficult the treatment is that Burzynski puts his patients through. Fortunately for Seán, his mother is a registered nurse and was able to handle mixing up the solutions under sterile conditions, infusing them into his Hickman catheter, drawing the blood work, and in general being his around-the-clock private duty nurse. According to Seán’s sister, it takes his mother 45 minutes just to prepare the infusion by mixing up the antineoplaston solution. Meanwhile Seán’s father quit his job to help take care of him, as Seán quite understandably laments that he can’t take care of himself anymore and has a very hard time just doing routine activities of daily living. In fairness, Seán would still require much of this care even if he were not being cared for through the Burzynski Clinic, but certainly the intense labor that is required to mix up and administer the antineoplaston solution would not be necessary if he were not being treated by Burzynski, nor would the expenditure of €120,000 or the massive effort it took to raise that much money.

The last half of the show alternates between preparations by Seán and his family for his 21st birthday party, with his friend taking him shopping for clothes, his family bringing his sister back home to Ireland from San Francisco, where she lives now, to surprise him, and other preparations, and Seán undergoing an MRI to determine whether his tumor had responded to the several months of antineoplaston therapy he had been undergoing. Fortunately, for Seán, his results took a few days to come back, which meant that he could enjoy his birthday party without the devastating news that later came. Not only did his tumor fail to shrink, but it didn’t even stabilize. In fact, it grew by 35%. Since tumor growth is usually measured on a 2D image, that means in terms of volume, his tumor grew by as much as (1.35)3 = 2.46-fold. He was taken off the antineoplaston therapy and is next shown looking for other alternatives, with his doctors suggesting that he go on Aviston, which appears to be a different spelling of the word “Avastin” or an alternate trade name. Assuming that’s the case, this is not an unreasonable option, given that gliomas tend to undergo a lot of angiogenesis.

There are a number of things about this documentary that one can learn if one is involved in caner care and knowledgeable about Stanislaw Burzynski. First of all, I find it rather telling that no one from the Burzynski Clinic, not even Stanislaw Burzynski himself, apparently agreed to appear either on camera or via telephone interview. Burzynski loves media attention; you can tell when he’s on camera that he’s just eating up the attention. Indeed, from my perspective he’s an egomaniac, full of the arrogance of ignorance about things like personalized cancer therapy, prone to contemptuously dismissing and attacking anyone who has the temerity to question the Great and Powerful Burzynski. Indeed, he’s even taken credit for pioneering the concept of personalized cancer therapy based on genes and the concept that cancer is a genetic disease, claiming to have published a journal article about it 20 years ago, allegedly long before conventional scientists and oncologists even thought of it. The problem, of course, is that, as far as I can tell, he published no such paper and personalized therapy is a concept older than 20 years. Of course, Burzynski tends to clam up when questioned about patients who didn’t get better pursuing his treatment or from interviewers who are not likely to be sycophants, toadies, and lackeys (e.g., Eric Merola). Whenever he does agree to be interviewed by a real journalist, generally he can’t prevent himself from lashing out at critics and making grandiose nonsensical claims.

More importantly than no one from the Burzynski Clinic showing up, there’s the question of the clinical trial. Remember how, in the 1990s, the agreement between the Texas Medical Board and Stanislaw Burzynski that allowed him to keep his license stipulated that Burzynski:

  • Cannot distribute unapproved drugs [like antineoplastons] in Texas
  • Can distribute “antineoplastons” only to patients enrolled in FDA approved clinical trials, unless or until FDA approves his drugs for sale
  • Cannot advertise “antineoplastons” for the treatment of cancer
  • Must place a disclaimer to his website, promotional material and ads stating that the safety and effectiveness of “antineoplastons” have not been established

Interestingly, although in the Irish television show antineoplastons are described as “trial therapy,” we learn nothing of the actual clinical trial, nor do we hear any mention of informed consent, protocol documents, etc. I’d give my proverbial eye teeth to get a look at the informed consent, protocol documents, and the description of exactly which clinical trial into which Seán was enrolled. If you go to ClinicalTrials.gov and type in “antineoplaston” plus either “glioma” or “glioblastoma,” you’ll find 16 trials. Eliminating the trials for children or for which glioma is not the tumor type being studied, that leaves four trials:

So what we have here are a bunch of phase II clinical trials, which are meant to be preliminary, all started in the 1990s, all with statuses on ClinicalTrials.gov listed as unknown, none having been updated in at least three or four years, and none, apparently, having been published in the peer-reviewed literature, at least in a form linkable to the ClinicalTrials.gov entries. As the NCI states:

Antineoplaston therapy has been studied as a complementary and alternative therapy for cancer. Case reports, phase I toxicity studies, and some phase II clinical studies examining the effectiveness of antineoplaston therapy have been published. For the most part, these publications have been authored by the developer of the therapy, Dr. Burzynski, in conjunction with his associates at the Burzynski Clinic. Although these studies often report remissions, other investigators have not been successful in duplicating these results.

Given that these are all phase II studies, it’s hard to believe that the FDA would allow Burzynski to keep them open over 13 years, but apparently it has. All of this brings up the question yet again: Which clinical trial was Seán enrolled in? Inquiring minds want to know! What “clinical trials” are all those other patients being enrolled on? Again, inquiring minds want to know! Finally, why doesn’t Burzynski offer Seán his “personalized gene-targeted cancer therapy.” It probably wouldn’t be that big a deal to get the blocks of tissue from Seán’s biopsy and have them analyzed. Yes, inquiring minds do want to know.

Perhaps the saddest part of the show is the end, because it demonstrates how a person like Burzynski, by offering false hope, can tempt even highly intelligent people who would normally be skeptical of such claims. As I’ve said before, if I were facing a terminal disease like the Seán is facing, even I’m not entirely sure that someone like Burzynski couldn’t tempt me. I don’t want to die any more than Seán does. But that doesn’t change the insight into Burzynski’s hold on his patients, even when his antineoplastons don’t work. For instance, here’s Seán’s mother’s response to a question asking whether she thought going to Houston was a waste of time given that the antineoplastons didn’t work:

No, not at all because there was a girl that was there a month before us from England. She’s now tumor-free. if you didn’t try you wouldn’t know.

How often do we hear this rationale? Burzynski families and their patients often fall into this trap, like Seán’s sister:

I think with everything you do in life you will always have people who make negative remarks. One of my friends started telling me that she had heard bad things about Burzynski, and I just said, “Do you know what? I don’t want to hear it.” A positive mental attitude is so important. It’s so important to a person who is ill, to feel as if he has hope. To feel as if he has a reason to get out of bed in the morning.

The show concludes with an image of Seán sitting in his wheelchair, watching his ex-teammates practice hurling, and saying how after he is through with his cancer he wants so badly to get back to playing again. It’s a devastatingly poignant moment that increased my contempt for Stanislaw Burzynski and the false hope he gives cancer patients under the guise of research, often at the cost of hundreds of thousands of dollars borne by their families and friends.

How does he keep getting away with it? I don’t know.