I carried this chap’s compelling filmeighteen months ago. Since then we haveseen little although I put it out of mind. What we see today raises plenty of concern although this item tells onesad story that ultimately sounds like too little too late if the protocol hadany merit at all.
I am seriously bothered by thecash sub game under way and that is certainly not part of any research scheme Ihave ever seen. This sounds seriouslylike a deliberate attempt to attach trappings of legitimacy to drive the money.
This boy has to open his files tofair minded third parties and make sure that it is tracked monthly. We have to get rid of the secrecy nonsensethat always surrounds these schemes. Itis not impossible to correct the data against the likely outcomes to determineif real improvements are taking place although single events can be terribly misleading either way.
Besides, a patient with only daysto live is not even a candidate for anything except a last desperate roll ofthe dice. I will only be impressed if hegives the money back quickly. It was too late.
Stanislaw Burzynski fails to save another patient
Posted by Orac on November2, 2012
http://scienceblogs.com/insolence/2012/11/02/stanislaw-burzynski-fails-to-save-another-patient/
I hate to end the week on a down note, but sometimes it’s necessary.It’s been a while since I’ve written about Stanislaw Burzynski. I’m sure yourecall Burzynski. He’s a hero in the alternative medicine world, having beencast as a martyr to The Man (i.e., the FDA and Big Pharma) because of hisselling of a dubious cancer cure that he calls antineoplastons. Although he’sbeen selling his questionable cancer treatments for thirty years now, he’s recentlybeen in the news a lot lately thanks to a credulous paean to his activities inthe form of a movie that was released in 2010 called, unimaginatively enough, Burzynski: The Movie. As I pointedout late last year in myreview of the movie, it is indeed a credulous paean that portrays Burzynskias a Brave Maverick Doctor battlingThe Man, all in order to bring The One True Cure for Cancer to the people. Hewas also featured in Suzanne Somers’ encyclopedia of cancer quackery Knockout,which could best be viewed as advertising for every major cancer quack you canthink of. Burzynski is also known for siccinghis attack poodle on skeptical bloggers who have the temerity tocriticize Burzynski for peddling an unproven cancer cure, charging his patientsfor taking part in his clinicaltrials, and his“personalized medicine for dummies” approach to targeted therapy.
All the while, patient after desperate cancer patient is drawn likeflies to the proverbial lantern to Burzynski’s clinic in Houston, lured by thepromise of a cure for the incurable, willing to pay hundreds of thousands ofdollars to realize that promise, no matter how many fundraisers arerequired or how many journalists throwaway basic journalistic skepticism to pen what are in essencecommercials for Burzynski’s clinic. Meanwhile, his patients drop like flies.I realize that the vast majority of these patients would have died anyway. ThatBurzynski failed to cure them is not the issue. The issue is how he sells auseless therapy, how he represents his therapy as “natural” but uses lots ofchemotherapy anyway, how he uses extremely expensive cocktails of targetedtherapies with unknown toxicities, and how he charges patients hundreds ofthousands of dollars for taking part in his clinical trials, which have yet tovalidate his antineoplastons as efficacious and safe after 20 years of trying.In other words, Burzynski charges huge sums of money for false hope.
And now another young cancer patient has paid the price. Let’s jumpback in time a couple of months:
The Mackey family in
A Danvers native and graduate of Danvers High School, Class of 2002,Rachael, was just beginning to create her life, graduating from Bryant Collegeand working as a model as she traveled the world and developed her own smallbusiness, when she began to experience intense headaches.
Doctors trouble shooted the headaches treating Mackey for potentialmigraines and even prescribing eye glasses to see if that would help, but theheadaches would not dissipate.
“It was like having a four-month headache,” Rachael said. “There was somuch pressure in my head.”
Her mother Kathy Mackey said that when Rachael was slated to travel to
The news wasn’t good. Mackey had a 7 cm grade II oligoastrocytoma. In2010 she underwent a craniotomy to remove the tumor. Unfortunately, as thesetumors are wont to do, her cancer recurred in December 2011. Mackey underwent asecond surgery in June, but apparently her surgeons were unable to resect thetumor. Consequently, it was recommended that she undergo chemotherapy andradiation, and it was estimated that there was only about a 3% chance that thetumor would responde significantly to the regimen.
Now put yourself in Mackey’s place. You’re 28. You’re a beautiful youngwoman. You’re faced with a horrific, almost certainly fatal diagnosis. Yourlife is likely to be measured in months—possibly even weeks—rather than thedecades more 28-year-olds expect to live. No career. No marriage. No children.No dreams realized. I get it, at least as much as anyone who hasn’t faced sucha diagnosis can get it. You want to live. You’re willing to do almost anythingto live. Heck, I’m well into my middle age now, and I would still want to live.I’d probably want to live even if I were 80, although perhaps not as stronglyanymore, having had a good life.
Enter Burzynski and his antineoplastons:
During their research, they discovered an alternative cancer therapy in
After enduring two major brain surgeries and given the low successrates and horrible side effects that radiation and chemotherapy would have,Mackey wants to try the program at Burzynski Clinic.
“I like that they treat the cause and stimulation of your cancer — notjust the symptoms,” Mackey said who at the moment is asymptomatic. “Becausewithout treating the cause, the tumor will just continue to come back. Our goalis to defeat the tumor and not have to worry about it for the rest of my life.”
The clinic has currently been approved for Phase III Clinical Trial forAntineoplastons treatment and Mackey’s brain tumor met the criteria to beaccepted as a patient in the trial.
There’s that damned phase III clinical trial again! I would almost killto find out how that particular trial was ever approved. (That’s metaphorical,people. I wouldn’t actually kill anyone, but leave it to a Burzynski fan to tryto quote mine me.) The reason, of course, is that Burzynski wields that phaseIII trial like a club against his critics, with its implication that becausethe FDA approved his trial there must be something to it. Personally, havingpored over Burzynski’s publications, I just don’t see it, which is why I’d loveto see the preliminary data and rationale upon which Burzynski got this trialapproved. I also can’t help but note that if you go to ClinicalTrials.gov andlook up Burzynski’s phase III trial, you’ll see that it was approved inDecember 2010 but is still, nearly two years later, not recruiting anypatients. This is quite unusual. Most investigators can’t wait to accruepatients to their clinical trials, and most institutional review boards (IRBs)and clinical trial offices get very antsy if a trial is open for a year andisn’t reaching its accrual targets, much less not accruing even one patient.I’ve seen it many times at the two cancer centers where I’ve worked. I supposethat’s the advantage of owning the “research institute” and the IRB. I’m sureno one’s giving Burzynski any crap about not having opened his phase III trialyet other than cranky skeptical bloggers like myself, and, with his money flowcontinuing apace, Burzynski can afford to ignore us.
Be that as it may, I also hate how Burzynski claims to treat the causeof cancer more than oncologists. Let’s just put it this way. In the unlikelyevent that antineoplastons actually demonstrated significant antitumoractivity, they’d be chemotherapy, every bit as much as doxorubicin, taxotere,or cyclophosphamide. To label them as somehow “natural” and “nontoxic” isnonsense, a lie. It’s also about as unethical as one can imagine to do whatBurzynski does, which in this case was to charge Mackey $30,000 for her initialtreatment and then $7,000 a month after that, with an estimated total cost of$100,000.
As so many other Burzynski patients have done, Mackey and her familytook to fundraising, holding a yoga fundraiser and a golf fundraiser, amongother fundraisers, and, of course, taking to the web and Twitter. Knowing that Mackey diedon October 28, it’s truly saddening to read herTwitter feed and blog. While I encourage you toread Mackey’s Twitter feed and her blog, I would strongly discourage any of youfrom commenting there with anything other than messages of sympathy andsupport. Remember, the family has just lost a daughter at far too young an age.There is nothing to be gained from recriminations and criticisms on her blogs.I trust that most of you won’t even think about doing that once you see herstory in more depth.
Bob Blaskiewicz over at SkepticalHumanities has started a Storifypage that chronicles Rachael Mackey’s experiences with the BurzynskiClinic. It begins with a CT scan that showed that Mackey’s tumor had started togrow again and continues with her video blogs:
Here she is after theantineoplaston therapy has started. Note that it’s dated a mere eightdays before her death:
About a week after starting antineoplaston therapy), about a day beforeshe posted the above video, Mackey Tweeted:
@jclucas25 havingheadaches can feel this brain tumor dying off!!! #Burzynski
—Rachael Mackey (@RaeMacks) October 20,2012
Unfortunately, she was mistaken about the significance of her symptoms.Eight days later,RachaelMackey died. We don’t know the details. We don’t need to know. She had aterminal cancer, and most likely it was simply progression, although one can’trule out the possibility that the antineoplastons hastened her death. They arenot nearly as nontoxic as Burzynski claims, as I’ve documentedmultiple times before. We can never know, however. Chances are, thisunfortunate young woman simply died of her disease and the antineoplastons didnothing to slow its progression.
Burzynski fans frequently attack a straw man in which skeptics are saidto blame Burzynski for the deaths of patients like Rachael Mackey. They like topresent Burzynski as taking on hopeless cases, all in the name of advancingcancer care by “personalizing” it (although, one should note, that“personalization” and “targeting” almost always includes antineoplastons inBurzynski’s hands, which doesn’t represent much in the way of “personalization”to me). He’s presented as the Brave Maverick Doctor willingto take on The Establishment because, well, he just cares so deeply about hispatients, and, given the really sick patients who flock to his clinic,Burzynski can’t really be blamed if nearly all of them die, can he? It’s notfair, right? After all, nearly all of them would have died anyway with conventionaltherapy, right?
Not exactly
.
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