Category: PNET

Burzynski Patient Andrew B.’s Story

In the fall of 1995, 7-year old Andrew B. started vomiting. An MRI revealed PNET, a tumor in the pineal region. In December, surgeons removed a spherical tumor about an inch in diameter. Andrew’s case was reported in depth in The Times Union in April of 1996. The journalist, Holly Taylor, reported at the time:

Three leading cancer specialists said that Andrew’s cancer -a tumor called PNET and found in the pineal region – regrows and kills in 12 to 18 months if left untreated. The newest regimen of radiation and chemotherapy carries a 60 to 70 percent chance of cure, they claimed.

After doing her own research, Bryce instead embarked on a journey through the world of alternative cancer treatments and said she chose Burzynski because his patients spoke of remarkable recoveries from his nontoxic treatment.

“Not treating this kind of cancer is unheard of,” said Dr. Fred Epstein, a pediatric neurosurgeon who operated on Andrew at New York University Medical Center. “I’m surprised Burzynski is willing to treat this child. This is a curable case. This is absolutely unconscionable.” In the story, one can follow and understand the parents’  rationale. Irradiating a child’s brain is delicate and fraught with real dangers, including radiation necrosis and stunted development. Chemotherapy can be toxic, though it is often well tolerated and researchers are constantly refining treatments to reduce and manage side effects. Andrew’s family chose to forego a promising line of treatment by Jonathan Finlay at Sloan-Kettering for Burzynski’s antineoplaston treatment:

Yet [Andrew’s mother] said Andrew would be a guinea pig with the maverick Burzynski or the established Finlay, so she chose the least toxic course.

This is based on the mistaken belief that antineoplastons, in some universe, is non-toxic. Of course the known side effects stretch to three pages in the patient consent forms. With no known benefits and only risks, putting anyone on antineoplastons ALWAYS fails a risk/benefit analysis. The hubris of the doctor administering the treatment is epic and would be farcical if it weren’t for the fact that he “specializes” in only the sickest children:

Comparing himself to Louis Pasteur, Burzynski says he’s fighting the country’s medical establishment and its gold standard of chemotherapy and radiation. He calls his drugs antineoplastons and said they stop the multiplying of existing cancer cells and prevent the growth of new ones without toxic side effects.

“The war on cancer is a failure. Chemotherapy is not going to cure cancer,” said Burzynski. “None of these doctors have had the chance to review our work. So they only know what chemotherapy and radiation can do.”

You see, there’s a difference between Burzynski and Pasteur–Pasteur published, his work was reviewed, and he earned the respect of his peers. Burzynski has piddling case series and patient anecdotes and half studies, none of which is published in a respectable journal. Of the 60+ trials he’s started, ZERO have been reputably published.

Here’s how Burzynski makes his money:

Under FDA regulations, Burzynski can sell his drugs in Texas, but cannot ship them out of state, so [Andrew’s mother] has been traveling to Texas to obtain her son’s medication. She said her family paid $13,000 for the initial three week outpatient care at Burzynski’s clinic and they were spending $4,000 a month for drugs.

The FDA approved antineoplastons for clinical trials for patients with brain cancer, non-Hodgkins lymphoma and adults with uncurable cancers, but the Food, Drug and Cosmetic Act prohibits doctors from charging patients for medications in clinical trials because it creates a conflict.

[Burzynski spokesperson Dean] Mouscher said Andrew was placed in a clinical trial Friday and the family will pay for medical services, but not medications. Bryce said her local HMO wouldn’t cover experimental treatments so the family has paid the expenses themselves. [emphasis added]

Burzynski has treated patients protected by a legal technicality that does nothing to resolve the conflict of interest. At the time that the article was written, it appears that Andrew is active in tae kwan do and his dad says that his son is doing well. But this is apparently the grace period between surgery and recurrence, so of course he feels better. But the doctors warn that:

“without radiation and chemotherapy, the cancer “always” reappears in four to seven months […].”

All of this was going on at the same time that Burzynski was on trial and his desperate patients were trying to put congressional pressure on the FDA:

His patients talk of miraculous recovery on talk shows and testified before Congress in February, as did [Andrew’s family]. But the medical community and the U.S. Food and Drug Administration want to see hard data from him.

“He’s claimed thousands of cures, but very few of his patients have been put on a protocol. All he has to do is keep records,” said Barrie R. Cassileth, Ph.D., who teaches at the medical schools at the University of North Carolina in Chapel Hill and Duke University.

Keeping accurate records has never been Burzynski’s strong suit, as was revealed in this warning letter issued to Burzynski in December, and so his “thousands” of cures remain hypothetical.

And you want to know why his patients are willing to fight for them? He shamelessly wields their desperation like a shield, as was documented in a January 29, 1997 Washington Post article:

To Burzynski’s 300 grateful patients and their families, however, he is a savior, in most cases their last hope in the fight against swiftly growing brain tumors and other forms of cancer that do not respond to conventional treatments. To them, this is the most urgent matter of life and death, and they fear that if Burzynski is convicted, they, too, will receive a terrible sentence. He is the only source of the medicine they are convinced is keeping them alive.

“If I go, they will all die,” Burzynski said.

But at least this reprehensible vile creature doesn’t compare himself to Jesus.

“[His trial following a 70+ count indictment] is a big nonsense,” [Burzynski] said. “It is keeping me from my work. I am treating the sickest people you can find. It is not nice. It is difficult. They are like the lepers from the Bible.”

Oh, hell.

So there is, in his estimation, no salvation for these cancer patients but through Him. And these patients, including Andrew’s mom, did try to save him as we see in this newsletter clipping from the time:

defensefund

Such generosity has repeatedly resulted in the renewed victimization of the desperate. We see how things got started, and we see, essentially, exactly what is going on at the modern ANPCoalition website, where patients are desperately fighting Burzynski’s battles for him:

“We were lucky, we started treatment before the FDA deadline of February 10, 1996, the day the agency decided to cut off treatment for any new patients who didn’t meet certain criteria. The criteria: the person had to have exhausted conventional chemotherapy and radiation.

“The battle has reached the national level and four Congressional hearings have been held on the FDA’s abuse of power, most recently in July when parents of other children like myself fought for the right to choose Burzynski’s treatment. All the patients–including my son– need your help. The legal fund was originally developed to help Burzynski remain open. But the fund has dwindled after $50,000 was spent in the course so 7-year old Zachary [M] and 23-year old David [S] could stay on Burzynski’s medicine so they could stay alive.”

We do not see the outcome of Andrew’s treatment in the record. He lived for several years, but it is also clear that he had had multiple surgeries and chemotherapy, as his mother reports:

We were scheduled for yet another surgery. Summer had just arrived it was so warm and beautiful outside. Andrew no longer had the port for chemotherapy and was free to play in the water and be a child surgery meant bandages and inside looking out. We were devastated Andrew saw our pain and went quietly to his room collecting all his pins from the Alamo and distributed them to each of us with a quiet smile.

And:

He endured many surgeries and always had smiles and was more concerned for others than himself.

At age 9, after being in hospital isolation for two months, we breathed fresh air and touched grass for, what felt like, the first time. Andrew could not leave the hospital so neither did I, despite pleading from family. I needed to leave just for a little while, they said but I could not. The only thing I could do was watch the river with Andrew from his window and share his pain. That was all.

Andrew died under the care of a conventional doctor in New York at the age of 11. According to his mother:

When he was dying, I asked myself, “what could possibly be worse than this?” Because this was horrible–he was paralyzed, he couldn’t talk. It was anyone’s worst nightmare.

In memory of her son, Andrew’s mother established a foundation that supports children with cancer and that has funded actual research. The mother, however, thinks that Burzynski helped, though we’d call that a statistical outlier, who, let’s face it, had surgery:

I believe it gave him two more years of a full life. In the end we were not one of the lucky ones.

Please contact your representatives in Congress and inform them about the 202 pages of charges that were filed against Stanislaw Burzynski.  PLEASE don’t let this happen again.