Category: Antineoplaston
Burzynski Patient Miki B.’s Story
The story of Miki B. appeared online early in the skeptical backlash against the Burzynski Clinic, which came about after a chap named Marc Stephens, who had been hired by the Clinic to clean up its reputation on the web, threatened a number of skeptics with legal action in the fall of 2011. He sent a high school student a picture of his house and threatened to contact his school. This is par for the course among hardcore Burzynski supporters. Skeptics have had their employers and licensing boards contacted. None of these have intimidated the skeptics, of course, because who could live with themselves if they had been silenced? But this case will clearly demonstrate that nobody is safe from the ire of a “true believer,” including Burzynski’s own patients.
We did not know much about Miki other than she was Australian and had breast cancer. We don’t know the stage. She started appearing on twitter in April 2012 talking about the Burzynski Clinic.
Apparently this booking was for late July. She was traveling from Melbourne to Houston for Burzynski’s treatment. This takes her some 8,900 miles away from her support system (and any chance that she will encounter a neutral voice she will trust). In the meantime, she seems to be researching, though the quality of her sources is in some doubt.
This is patently false. The genome was not sequenced until 2003, and work had been ongoing since the 1980s. This included 20 research universities and independent labs. Burzynski’s was not one of them. You find no relevant publications in the ’70s from Burzynski to suggest that he was a pioneer of genetic… anything.
We hear from Miki, who goes under the pseudonym Xena, after she has arrived in the states and has been put on what Burzynski calls “targeted gene therapy.” This is a cocktail of drugs that have typically never been tested together for efficacy and toxicity plus sodium phenylbutyrate, a urea cycle drug that Burzynski manufactures and sells at his in house pharmacy.
We only learn how many drugs she has been put on on Halloween:
By this point, skeptics have been in contact with Miki on Twitter, and it must be said, they were not always nice. There is nothing wrong with contacting a cancer patient who is public about their treatment and asking them about it, or even giving completely unwanted advice, but one should always consider that patients have a lot going on and “bringing the hammer down” is not helpful, nor is it likely to do anything but encourage patients to dig in.
We learn that Miki is in contact with other Burzynski patients. Usually, it seems that most patients get contact information from the Burzynski Patient Group. They are also often on cancer-related message boards irresponsibly promoting Burzynski to the desperate. (Almost by definition, cults recruit the vulnerable.) Of course, this is a biased group and does not give you a sense of the wider picture. That contrast is clear below:
Miki is experiencing survivorship bias. Of course the people you talk to are doing well. The ones you talk to who didn’t do well, well, they don’t talk back. This was made clear when the Clinic gave a list of patient names and phone numbers to a new patient with pancreatic cancer. The sheet looked like this:
Joseph A. was alive, but died well within the expected life expectancy for his diagnosis. Maxine M. had already died when this was given to the new patient. Irene S. would be dead within the month. Joanne S. too was alive but was also dead not a year after starting therapy. This pancreatic cancer patient this was given to, Wayne Merritt, was unable to contact any of them. Wayne, by the way, is still alive, and Burzynski’s fans crow that this is evidence that Burzynski works. They don’t seem to realize that the only difference between these patients and Wayne is that Wayne stopped going to Burzynski. Wayne also alleges that he was given a bait-and-switch by the Burzynski Clinc, a not-uncommon complaint. See, for instance, the cases of McKenzie L., or Kathy B., who made a video of a consult with Greg Burzynski, who should have been able to tell her that she was not eligible for antineoplastons but apparently didn’t. The caption to Kathy’s video read:
I made this video in anticipation that I would be receiving the antineoplastons. Apparently after spending over 30,000 here I found out that the Antineoplastons are only reserved for brain cancer patients who have already undergone chemo radiation.
Crucially, Miki does not know the difference in numbers between the survivors with her cancer and those who died, and then the survival rates of someone on standard therapy. This is how you tell if a treatment is working. Nevertheless, something new is creeping into her tone as she goes into mid-November…
And then:
We simply don’t know what the setback is. But by January, we get the really bad news that the skeptics were expecting.
In February, however, we see something that is absolutely chilling and distressingly common. Notice here that we are only seeing one side of a conversation. The other side has been deleted. This will be very important.
This is very bad. Numerous patients on this website have reported that the Burzynski Clinic has given unbelievably unhelpful interpretations of medical scans, and they end up celebrating worsening symptoms. I think that the most clear evidence of this is the case of Amelia S., but we have also seen it in several other stories:
- The family of Haley S heard this (also, see the clinic’s heartless reaction to a stroke that the child had).
- The Clinic gave the same prognosis to Justin B’s family in 2006.
- We see a similar cyst in Leslie S.’s story (2006), and it nabbed Burzynski an extra $7,500 before she died.
- We see it AGAIN–as far back as 1994!–in Cody G.’s story.
- We saw it again in the case of Samantha T.
- We saw it again in the story of Christy M.
- A similar story came from Georgia State Senator Ed G.’s story.
- In the most grotesque horror show we’ve ever written about, Burzynski himself tells the family of Chase S. the same thing. Poor Chase ended up lying in state in his family’s front room for months.
So, who was on the other side of that conversation with XenaRaider? Well, it turns out a truly, truly horrible person tweeting under the pseudonym “@BurzynskiSaves” who promoted Burzynski constantly. Constantly.
And this is true. Every time that Miki had posted something positive about the Clinic, @BurzynskiSaves would retweet it. But then she started to have questions, and @BurzynskiSaves started treating her like garbage.
When skeptics named the person behind the @BurzynskiSaves account, it immediately went private and nobody could see it. It came back not long after, and soon the entire tone of the account changed to one of sweetness and light. The account, it was clear, had been handed off to members of the Burzynski Patient Group. This was made clear when one started replying to herself:
This was peculiar, but the fact remains that members of the patient group had the keys to the account. And patients who have fallen out of the thrall of the Clinic have reported similar behavior as that experienced by Miki. Take for instance, the story of Burzynski Patient Cari U.:
As the charges multiplied, I asked Burzynski’s staff and the people leading our activist efforts for background information so I could accurately refute them. Had Burzynski refused help from a leading cancer center? Was he pocketing millions supplied by patients who had given up everything? But I was shunned. “You are beginning to remind us of E.,” I was told. E. had been blacklisted by the group for asking questions that leaned toward “the other side.”
Again, if you question the treatment, you become a threat to their belief and become ostracized. It doesn’t just come from the Burzynski patient group, however. The pancreatic cancer patient above who received a list of the dying as Burzynski’s references, after he made his accusation of a bait-and-switch public, received threatening phone calls from someone pretending to be a lawyer who had been hired by the Burzynski Clinic to clean up its online reputation. (How Marc Stephens, whose nasty letters to the Merritts are included here, got their names and number to do this is one for the ages. This is also why I find people defaming Wayne to be contemptible beyond measure.) Regardless, the patient group has embraced the BurzynskiSaves name, as is seen in this current shot of their Facebook page:
Many of these people in this group are slated to be Burzynski’s character witnesses in his ongoing legal confrontation with the Texas Medical Board come January.
Miki’s last favorable tweet about Burzynski was in February 2013. She died in June 2014.
Special thanks to research ninjas 1 & 2, the damsel on the dock, and Josephine Jones, who all contributed to this in their own way.
Burzynski Patient Alyssa A.’s Story
In 1993, when she was 5-years old, Alyssa A. was diagnosed with anaplastic ependymoma. She had surgery, radiation, and chemotherapy. As a result of conventional treatment, she had, according to her mother, no evidence of disease until January of 1997. She did, however, have slight facial paralysis damage to the pituitary gland from the treatment. The side effects of conventional treatment can be awful, make no mistake.
The tumor started growing again, and the family, according to a Riverside Press-Enterprise article from 15 February 1997, decided to forego a second surgery. By this time they had decided to go to Burzynski. According to the reporter, who was I’m sure trying to help:
Dr. Stanislaw Burzynski of Houston uses fluids that occur naturally in human blood and urine to treat cancer and the treatment reportedly has none of the side effects of chemotherapy.
By reportedly, they most likely mean, the family reported it. Burzynski’s own informed consent disclaimer (and the long record of testimony here) clearly demonstrates that the treatment can have awful side effects. According to Burzynski:
But other than that….totally safe? Not a chance. According to the same article:
Family and friends are helping [Alyssa’s family] raise the $16,000 for Alyssa’s treatment by holding a car wash and bake sale at the Harvest Christian Fellowship Church today. Right now Alyssa’s tumor is the size of a green pea. If it grows larger than 2 inches before the [they] raise the money, Alyssa will be excluded from the clinical trials, [her mother] said.
That $16,000 is likely the startup fee for the antineoplaston treatment at that time. In this article, they make no mention of the vast sums that Burzynski typically extracts from people who stay on his therapy for months. They raise $3000 in a few weeks, but then another appeal appears in the same paper of 22 Feb:
[Alyssa’s mom] said the therapy could cost as much as $40,000. The initial therapy, she said, costs $16,000 and followup treatments that cost $2,000 per month can run four months to one year, depending on the complexity of Alyssa’s case.
There is scant info about what happens when they go to Burzynski. What we know comes from 2 posts a cancer board hosted by MIT, after Alyssa was off treatment and had at least 2 tumors. On 23 July 1998, the Alyssa’s mother told another person looking into treatments:
Jessica, my name is […] and I have a daughter named Alyssa who has also been to the Burzynski Inst. for antineoplastons my daughter also had problems on the therapy. Alyssa had seizures and went into a coma for three days, but her tumor was shrinking in any event we discontinued that treatment.
How did this happen? We find out in a post from 1 Aug 1998:
I infused her with antineoplastons for ten months with good results. We still owe the man $98K, but after they pushed me to raise the dose of A10 to 200cc, she had seizures and we almost lost her. I did acquire [an] oral form [likely sodium phenylbutrate, which Burzynski also sells and which is the prodrug for ANP] from a patient that did not survive and she is on a safe dose. I have enough to get the job done this time. They are charging ancillary charges but not providing the care. I would not go to Houston again.
So, an overdose that may have put her into a coma for 3 days. Burzynski has historically had a problem not only with overdoses, but also with reporting them and preventing future ones from happening, at least according to the FDA, who during a recent site review found:
- Burzynski did not report all adverse events as required by his study protocols. One patient had 12 events of hypernatremia (high sodium), none of which was reported. There are several similar patients.
- The FDA told Burzynski: “You failed to protect the rights, safety, and welfare of subjects under your care. Forty-eight (48) subjects experienced 102 investigational overdoses between January 1, 2005 and February 22, 2013, according to the [trial number redacted] List of Hospitalizations/SAE (serious adverse events) [redacted]/ Overdose [redacted]/Catheter Infection report. Overdose incidents have been reported to you [….] There is no documentation to show that you have implemented corrective actions during this time period to ensure the safety and welfare of subjects.” [emphasis added] It seems that these overdoses are related to the protocol, which requires family members to administer the drugs via programmable pump on their own. Further, patient records show that there were many more overdoses that were not included in the Hospitalization/SAE/Overdose list.
Poor Alyssa may probably be counted among those patients whose overdose, in her case in 1997, should have triggered changes to the protocol to prevent other patients from “almost losing” their children. But he could not demonstrate that he ever did, and the human wastage piled up until 2013 as the FDA, inexplicably, watched. ONE patient overdose should have triggered these protections.
Not only that, but if the family actually thought that the treatment could “cost up to $40,000,” like they told the newspapers, how could they possibly have had informed consent of the costs?
Alyssa died on 1 March 1999.
What is baffling, however, is how Alyssa’s mom’s memory absolutely does not square with all the press coverage of her daughter’s case. In July of 2014, when the FDA waffled and allowed desperate patients–mostly children–to die on Burzynski’s drug, Alyssa’s mom appeared on facebook extolling the benefits of ANP:
Non-toxic? By her own account, Burzynski’s drugs nearly killed her daughter. And she does not seem to remember that, even though there were some bad side effects, due to conventional treatment Alyssa was lived for years with no evidence of disease until the relapse. This is simply another example of how anecdotes should not be used as evidence of efficacy. People make mistakes.
h/t to the research ninja
Burzynski Patient Cari U.’s Story
[As Stanislaw Burzynski goes in front of the Texas Medical Board again to face a list of abominable charges in November, and as we expect many of the patients who have defended him in the past to be used as human shields again, we have been bringing you the stories of patients who defended him but won’t be at this hearing. It is indeed a rare pleasure to be able to publish the story of someone who defended him only to discover what type of operation Burzynski runs. Cari U.’s story, which is reprinted here in its entirety, was first published in Health in 1998. We are very grateful for her permission to publish it here and glad to report that she is doing well, cured by what was then an experimental treatment. She experienced two clinical trials, a legitimate one and Burzynski’s, and she offers a rare, crucial perspective on the differences between the two. All footnotes are editorial additions that were not in the original. –eds.]
Diagnosed with incurable cancer, I had to fight the FDA for the alternative treatment I desperately wanted. I won–and that’s when my problems began.
At the end of February 1996, I sat in a large hearing room on Capitol Hill, staring at the elevated seats soon to be filled by the dark-suited members of the Subcommittee on Oversight and Investigations. The topic of the hearing was whether my doctor, Stanislaw Burzynski, could keep treating patients with the drug that seemed to be ridding me of cancer.
Two years before, at the age of 21, I’d been diagnosed with a slow-growing non-Hodgkin’s lymphoma. The diagnosis had come almost by accident. A routine scan following a bout of food poisoning had shown tumors throughout my gastrointestinal tract. After doctors at several oncology clinics said they had nothing to offer me, I began taking Burzynski’s medication, called antineoplastons (derived from the Greek for “against cancer”). After a few months I received good news: Scans revealed the tumors were shrinking. But the likelihood of my being able to continue the treatment was shrinking as well. The Food and Drug Administration had just won an indictment of Burzynski on 75 counts of mail fraud and interstate commerce of an unapproved drug.
I, along with dozens of other patients, decided to protest. Since another patient and I lived in Washington, D.C., we took to Capitol Hill, toting our bags of medicine around to elected officials as we asked for help. Most of the senators and congresspeople listened politely, stiffly said they would look into the matter, and nodded good day. A handful, however, welcomed us into their private offices, served sodas, and spoke with us at length. After such a meeting with Rep. Joe Barton (R-Texas), he called this hearing. Barton is one leader of a new movement to give Americans more freedom of choice on their medical care. He favored a bill to speed approval of drugs for serious illness and had just cosponsored the Access to Medical Treatment Act, a bill that would give patients the right to try any alternative therapy, even an unproven one. Barton wanted our saga to illustrate his point. For us, the hearing was a chance to expose what we saw as a witch-hunt of our doctor.
Patients, former patients, and their family members arrived in Washington by the dozens, some flying cross-country to attend. I arrived with Michele, with whom I had been lobbying for the past month and who had become a good friend. Seven years earlier Michele had been diagnosed with a rare liposarcoma that, despite numerous tries at chemotherapy and alternative treatments, kept resurfacing. In front of me sat Maria, whom I had befriended in Burzynski’s waiting room last year. She and her two teenage children had traveled to D.C. from Pennsylvania. Maria had an astrocytoma, a brain tumor that had gradually shrunk to a sliver after she went on antineoplastons. On my other side was a father from New Jersey whose 12-year old daughter had been diagnosed with a brain tumor. “Only a couple weeks after she started on antineoplastons she was out of the wheelchair!” he proudly reported to me.
The entire back row of the hearing room swarmed with cameras and reporters. Barton took his seat at the center of the panel and, in his soft drawl, described the hearing’s purpose and announced that FDA officials had turned down his invitation to testify.
Burzynski’s most vocal supporters then paraded in, taking their seats at the front, where they would, one by one, tell their stories. Over the past year I’d gotten to know them: the wealthy businessman and his wife who had transformed their dining room into pro-Burzynski headquarters after antineoplastons cured her of the same type of cancer I was battling; the mother who would bounce her toddler son on her knee as she spoke of how antineoplastons had dissolved his brain tumor; and the decorated policeman whose baby, one of twin girls, also experienced remission from a brain tumor after treatment with antineoplastons, only to die of brain damage caused by her previous long run of chemotherapy and radiation. They all spoke in quivering, choked-up voices, some with tears streaming down their cheeks. Finally the policeman’s remaining twin daughter, her long white-blond hair tied with a bow, asked into the microphone, “Why can’t we throw away the bad medicine and keep the good medicine?”
Anyone who’d ever had cancer or known anyone with cancer began to cry. Anyone who was a parent and could imagine having a child with cancer began to cry. The congresspeople shifted uncomfortably in their seats.
Except for a couple of reporters scribbling on steno pads, I was possibly the only person in the room with dry eyes. Maybe I was unaffected because I had heard the stories a dozen times. But more likely I didn’t cry because I was angry. I was angry that Burzynski’s patients had to keep resorting to tears to get heard. I was angry for all the time and energy I had devoted to fighting off the FDA rather than to getting better. But I was also angry for a reason I was just starting to uncover: that our problems with the FDA could be traced to Burzynski himself.
What I didn’t realize was the scope of our actions. We were affecting the course of alternative medicine as a whole, being used as a voice for the Access to Medical Treatment Act. Yes, I’d like to think every American should have the right to the treatment of his or her choice. Yet I can’t help but see my story as a cautionary tale. Had I only known then what I do now.
I first visited Burzynski’s privately owned clinic in Houston after top specialists at Stanford and Harvard gave me the same advice: Do nothing-a strategy called watch-and-wait. Chemotherapy doesn’t work against slow-growing tumors like mine, they said, and radiation would damage nearby organs. When the cancer’s growth speeded up-in a year, five years, 20 years, no one could say for sure–then a bone marrow transplant might be the route to take. But perhaps, they suggested, if I sat tight for a while, one of the exciting experimental drugs being tested by the FDA would be approved. Unfortunately, I couldn’t get into any of the clinical trials; those spots were reserved for people who had been failed by at least one method of mainstream treatment.
But, at age 21, waiting was not easy. It was unsettling to know I had cancer and was doing nothing about it. Out of frustration, my parents and I began researching alternative treatments, from massive doses of vitamin C to macrobiotic diets to the unproven regimens of doctors from Canada to Mexico.
Given Burzynski’s notoriety, it didn’t take long for us to come across the subject of antineoplastons. We sent away for Burzynski’s materials and also contacted the Lymphoma Research Foundation of America, which, after noting that many people at its support group meetings were Burzynski patients, had compiled a list of those willing to share their experiences. We tracked down a dozen who had used or were using his treatment for the same diagnosis as mine. Amazingly, all said taking antineoplastons had led to a significant decrease in tumor size if not a complete and lasting remission. Over and over they repeated ‘one word: nontoxic. Even if antineoplastons didn’t work for me, I concluded, they wouldn’t cause harm.
I consulted my oncologist, who, after reading the information I provided and speaking with colleagues, took a deep breath and said, “I understand how frustrated you must be and why you would like to try this. I wish there was something here I could offer you, but there isn’t. I can’t tell you to go to Houston, but there is nothing I can find that would make me say, ‘Don’t go.'”
The scientific evidence for and against antineoplastons was thin. Burzynski had written papers that detailed impressive-looking results in individual patients, but they hadn’t been published in major peer-reviewed journals. Other oncologists who had examined records of brain tumor patients treated with antineoplastons had seen enough to recommend research, but they had looked at only seven cases. (Single-case reports can’t fully account for the fact that some tumors may wax and wane even without treatment.) And then there were the troubles of which I was well aware: Burzynski’s history with the FDA.
Fifteen years ago the FDA sought and won an injunction to stop Burzynski from shipping an unapproved drug across state lines. Two years later the FDA raided his clinic, taking patients’ CAT scans, MRIs, and other records. Burzynski had subsequently appeared before three grand juries but hadn’t been indicted. However, problems with the FDA seemed almost standard for the alternative doctors I researched. Many had resorted to practicing in another country.
Burzynski described antineoplastons as a mixture of peptides and amino acids found naturally in blood and urine that could cure brain tumors, lymphomas, and several other types of cancer without serious side effects. The premise was that antineoplastons reprogram cancer cells by switching off the genes that instruct them to multiply out of control and by switching on the genes that tell the cells to self-destruct.
A Polish-trained physician, Burzynski began treating patients with his mixtures in 1977. Initially he developed antineoplastons using his own urine; eventually he had gallons of urine shipped from public urinals. By the time I visited him he’d treated a reported 2,000 patients and was making synthetic antineoplastons in his own lab in Texas. In most cases antineoplastons weren’t covered by insurance plans, so patients themselves paid the medical bills, which started around $200 a day. I was one of the lucky ones. My insurance agreed to pay half.
I spent most of my first day at Burzynski’s clinic sitting in the large waiting room with three dozen other cancer patients and their families. This waiting room was different from the many others I had visited. Most obvious, it was filled with reporters and TV news crews, their lights bombarding us all. Words were unnecessary, as the youngest children told the story of antineoplastons’ appeal best. The children were victims of mainstream medicine. They wore the tattoos of those failures clearly: half-shaven heads zigzagged with scars; swollen, steroidal faces; and weak, wheelchair-imprisoned bodies. Then the cameras shifted to the children who’d been taking antineoplastons for months or even years. With full heads of hair, they ran and laughed and played with the toys in the waiting room, all the while hooked up to IV bags of antineoplastons.
Another difference was that people talked. No one had spoken in the waiting rooms at Stanford or Harvard or any of the other oncology offices I’d visited. Yet here there was an immediate sense of comradeship, and the common bond, it seemed, was that we all had heard unfavorable prognoses, even death sentences, from mainstream doctors. We needed the support of others who had sought out Burzynski as a last shot.
“I was diagnosed eight weeks ago with a brain tumor,” Maria volunteered the first time I met her. “I was skiing, and I had a seizure right there on the slope.”
“I’m here with my sister, all the way from upstate New York,” an older woman said. “She has kidney cancer and is back with the nurses now. Dr. Burzynski said he didn’t know if the medicine would help.”
I spoke with a man, bald with pasty yellow skin, who’d been diagnosed with a lymphoma. “We followed the advice of the first doctor we saw, and he got a bone marrow transplant,” his wife explained. “But before he was even released from the hospital the lymphoma came back. The hospital just dismissed us. They said, ‘Well, we tried. Just go home and get your things in order.'” The wife was 28, the husband 30.
I cringed when a woman asked me outright, “What brings you here? What were you diagnosed with?” But looking around the room at the people chatting, exchanging phone numbers, making dinner plans, and hugging each other, I realized it was a question everyone asked and got asked. For families who were sacrificing savings, jobs, and even homes to pay for this treatment, the security of friendship was all they had left.
In the waiting room that first day, I scrawled my signature on numerous documents releasing Burzynski from responsibility for anything that might happen as a result of antineoplaston treatment.
When I was finally introduced to Burzynski, he gave me a squinty-eyed smile, the corners of his mouth stretching toward long sideburns. A short man with a heavy Polish accent and a tendency to mumble, he exuded friendliness as he studied my chart. “Usually this treatment has very good success with slow-growing non-Hodgkin’s lymphomas. Every four hours you would get a dosage of two types of antineoplastons. You would get a CAT scan after you had been on the treatment six weeks. The treatment would continue for four months after you have a clear scan because we need to ensure that all of the lymphoma is gone and will stay away.”
I had heard similar promises of a simple cure at other alternative clinics and had fled. Yet the words of the patients I’d spoken with before coming to Houston echoed in my head, compelling me to begin.
The following morning in another clinic, I had a semipermanent IV surgically inserted in one of my largest veins, directly above the heart. The slender white tube was held externally by two stitches and completely concealable under clothes. Back at Burzynski’s clinic I was ushered into a large room filled with leather recliners, a sort of classroom where patients were taught correct administration of antineoplastons. On one wall hung newspaper clippings about Burzynski, one describing how he was called during Jacqueline Kennedy Onassis’s final days of battling lymphoma.1 He was not allowed to bring antineoplastons to her bedside in New York, however, since the first civil trial had ruled he could practice the therapy in Texas only.
Despite the ruling, it was no secret that the majority of Burzynski’s patients were not from Texas. The clinic operated on a “don’t ask, don’t tell” basis. I gave a Texas address of distant cousins to whom my monthly supplies of antineoplastons would be mailed. My cousins would then ship them to me. Many patients had similar arrangements. Others restocked by flying to Texas frequently with several empty suitcases.
I received my pump, attached by thin translucent tubes to my first bags of medicine. The pump looked like an enlarged calculator with a number pad and a digital display. It fit snugly into a blue tote the size of a camera case. The nurse connected the medication to the catheter with a simple, painless twist, programmed the pump, and began infusion of the clear, sticky antineoplastons. Because of their urinelike composition, the medication smelled of an overused public toilet. As Burzynski had promised, I felt nothing as the drugs entered my system.
Over a few days at the clinic I learned how to connect and disconnect the IV bags, change the tubing, and set the pump. I also experienced my first side effects: I couldn’t eat because my stomach was churning, and I was too tired for anything much besides reading in bed. Finally a nurse gave me a shot of an anti-inflammatory steroid, told me my reactions were good-signs of “tumor breakdown”-and, with Burzynski’s consent, sent me home, where I returned to college for my senior year.2
Twelve weeks later my CAT scans revealed the first signs that the tumors had shrunk. I called everyone I knew, relaying the news as tears of relief dripped onto my IV bag. Each scan that followed showed more reduction, and by eight months my scans, read by my radiologist and oncologist in D.C., showed a 35 percent decrease.
Word from Burzynski’s office, though, was that my response was slow, and so I was instructed to increase my dosage steadily. I began feeling the toll: My joints hurt to the point that it was painful to bend, type, or write; I could hardly eat; and I often slept the entire day. Worse, though, was the thirst. No matter how much water I drank, I was always on the verge of dehydration. I complained to my oncologist about all the side effects, and she recorded them. I complained as well to Burzynski’s nurses who called each week to check up on me. They said they, too, were recording them. I didn’t mind that no one suggested remedies. The pain seemed small payment for steps closer and closer to a cure.
Then one day I got a call from someone on the phone chain set up by Burzynski patients, relaying the news of the doctor’s indictment. As I listened to the shaky, panicked voice, I sized up my dwindling supply of antineoplastons. It would last a few weeks. I hurriedly phoned the clinic, asking to have six months of medication reserved for me. The place was in disarray. Some staffers were reluctant to speak freely, fearful the phones were bugged. Newcomers were filling in for the usual receptionist who, after traumatic cross-examination during her grand jury testimony on Burzynski’s behalf, suffered a heart attack while driving home. Because of the commotion and demand, the clinic was allotting each patient a two-month supply of antineoplastons, which had to be picked up in person at the clinic in Houston.
“Only a two-month supply?” I pleaded. “It’s finally working, and that’s not enough.”
Even when a drug is backed by a large pharmaceutical company, the FDA approval process is arduous and expensive. Rather than “innocent until proven guilty,” the premise is essentially “ineffective until proven effective.” And effective means results within precise standards from several phases of trials determining a drug’s safety, whether it works in the test tube, then on animals, then on humans, and then the best possible protocol. Most trials eventually involve not just a drug company but doctors in multiple hospitals working together to test the drug on hundreds if not thousands of patients.
To the FDA, Burzynski was someone who had flouted this system, who by not collaborating with oncologists, a major medical center, or a drug company was refusing to play by the rules. After the injunction in 1983, Burzynski had applied to the FDA to begin clinical trials, but the agency said his application was incomplete. In 1989 Burzynski got the go-ahead for a clinical trial with breast cancer patients, but the FDA says he never submitted any data. Trials were approved again in 1993, this time testing brain tumor patients, but the agency says Burzynski refused to enroll enough patients and the trials were canceled. All the while, at his clinic, Burzynski continued to treat hundreds of patients at a time with antineoplastons.
Shipping an unapproved drug across state lines to patients who aren’t enrolled in a clinical trial is a federal offense. (States regulate medicine within their own borders.) After a decade of trying, the FDA had finally convinced a grand jury that Burzynski was doing just that.
The day after I received the call I skipped work and graduate school, and flew to Houston with my mom. We hauled cardboard boxes filled with IV bags of antineoplastons out of the clinic, into our rental car, and to UPS. Then we met up with the dozens of other patients who had dropped everything to come to Burzynski’s aid. We organized a picket for the following morning at the federal building in downtown Houston.
The wealthy businessman and his wife, the mother and her saved little boy, and the decorated policeman, as well as other patients, relatives, and friends, paraded around and around, shaking homemade signs and chanting, “FDA, go away! Let us live another day!” Parents pushed their-children in wheelchairs. The children chanted through puffed-up cheeks and waved signs as best they could with swollen hands.
Our efforts appeared to succeed, as the clinic stayed open. I returned to D.C., where Michele and I, along with lobbyists working on Burzynski’s behalf, took to Capitol Hill every week.
Now that I was being quoted in the press, I started receiving calls from members of Congress, reporters (from as far away as London), and even interested scientists. Some were anonymous tips on who our friends were on the Hill. But others wanted to keep me abreast of allegations against Burzynski that were surfacing. One caller had heard that Burzynski had been given an opportunity to affiliate with the prestigious M.D. Anderson Cancer Center in Houston but had balked. Another claimed that Burzynski’s annual take-home pay topped a million dollars.
As the charges multiplied, I asked Burzynski’s staff and the people leading our activist efforts for background information so I could accurately refute them. Had Burzynski refused help from a leading cancer center? Was he pocketing millions supplied by patients who had given up everything? But I was shunned. “You are beginning to remind us of E.,” I was told. E. had been blacklisted by the group for asking questions that leaned toward “the other side.”
Burzynski’s patience was waning, too. When a New York Times reporter asked him why a top medical journal had never published findings on his drugs, he responded, “To hell with them.” He went on to compare himself to Albert Einstein and Louis Pasteur and said, “[Treatments like mine] have never happened before in medical history, so if the New England Journal of Medicine refuses to publish my paper, why should I waste my time with these fools?”
There, in black and white, my doctor was admitting he’d lost interest in making his treatment more scientific. All this time I’d campaigned on Burzynski’s behalf, I had cast him as a victim of the FDA and its conventions. But now I wondered whether it was actually the other way around. Might Burzynski be getting in the way of science more than it was getting in his way?
Taking a chance on this insight, I telephoned acquaintances at the FDA. They said that in trying to set up clinical trials in 1993 Burzynski withheld information, was evasive and hard to work with, and had only six patients in the trial until a judge ordered him to enroll more. Their message: Your doctor is the one making it difficult. Then I phoned Burzynski’s clinic and spoke with the clinical trials director, Dean Mouscher. He had no medical training. After his father had become a patient of Burzynski’s for a brain tumor, Dean had felt the calling. “Do you know how much paperwork the FDA wanted?” he asked me. He explained how the agency kept asking for minuscule, nitpicky information, how the clinic would have had to hire extra help to meet the FDA’s demands, how it had a limited staff. He said the FDA also had to okay every new patient and was turning away people who needed treatment but didn’t fit the guidelines. Mouscher’s answer in effect confirmed the FDA’S view: The clinic wasn’t willing to follow the rules.
Still, our political efforts had shaken the FDA, and soon after Barton’s hearing the agency agreed to approve a new set of clinical trials on antineoplastons, enrolling each and every one of us-an unprecedented break with the usual practice of studying only patients who fit specific protocols.
But Burzynski was still facing trial on mail fraud charges. Ironically, as he was scheduled to appear in court for illegal shipment of antineoplastons, he was at the same time legally sending them to all 400 of his patients around the country as part of the FDA-sponsored trial.
As the court date neared, our campaign gained more momentum. Patients bought angel pins for “Dr. B.” and his staff to wear. TV news shows covered our effort. “If you convict the doctor,” asked Ted Koppel on “Nightline,” “are you sentencing his patients to death?”
Meanwhile, my side effects worsened. Burzynski’s staff of doctors continued to tell me my increasing pain wasn’t a sign of toxicity but was more “tumor breakdown,” evidence that the high doses were working. To assuage my pain, they filled me with prescription painkillers, steroids, and anti-inflammatory agents, toxic medications to counteract effects of the “nontoxic” treatment.
Nothing helped. I rarely slept since the medication forced me to get up nine or ten times a night to go to the bathroom. Because antineoplastons contain a lot of sodium, the more I upped my dosage, the more thirst became the center of my life. I would drink a gallon of water during the day and go through another gallon at night. And I was still thirsty.
My regular oncologist was also growing frustrated since she had no basis on which to judge my progress in conjunction with my increasing side effects. She didn’t know what to expect, what was typical, or how long to continue therapy before deeming it unsuccessful. Burzynski seldom had answers to these questions. Although the clinic’s nurses called me regularly (daily when the FDA tightened its reins), I was losing confidence that my reactions were being analyzed and compared with those of other patients.
Exasperated and unable to control my nausea, I found myself back in the office of the gastroenterologist who had originally diagnosed the lymphoma, begging for help. He immediately ordered biopsies, tests he said should have been required months before.
He was right. For what showed up in the biopsies was that the cancer cells had turned aggressive, spreading fast. From all my research, I knew what that meant: The lymphoma was now much more dangerous, but was also likely to respond to chemotherapy. In a couple of weeks I had stopped antineoplastons, moved to be closer to my parents, and, at Northwestern Memorial Hospital, begun six rounds of standard chemotherapy.
Standard. Just the word relaxed me. I snuggled into the comfortable arms of an established scientific therapy, where I was fully informed of my exact protocol, not to mention any and all anticipated effects gleaned from years of research and painstaking documentation.
People laugh when I tell them that despite losing my hair, chemotherapy was simple. Now I realize I was comparing the treatment to all I had been through while taking antineoplastons.
Though the chemotherapy was not completely effective, its failure finally made me eligible for a spot in a clinical trial on the promising treatment called monoclonal antibodies. The therapy was touted as a magic bullet, infusing human antibodies and doses of radiation directly to cancer cells, eliminating the toxicity and side effects that normally accompany cancer treatments. Conducted at Northwestern, this was just the sort of trial that the Stanford and Harvard specialists had advised me to watch-and-wait for.
Suddenly I was experiencing the drug development process as it was meant to be. At Northwestern I was grilled relentlessly on my symptoms, poked and prodded, and bombarded with tests. Yet after my experience with Burzynski I felt grateful to be monitored so closely. When the next patient complained of a side effect, I knew the doctor could research the exact day, the exact hour, I’d experienced the same problem. With Burzynski, the patient after me who complained of a side effect like mine was probably told: “It’s tumor breakdown.”
In two weeks the treatment was complete. A few months later I heard the words I’d waited three years for: “There is no sign of lymphoma anywhere.”
Burzynski’s criminal trial began in February 1997. The media, swamped the courthouse. Patients launched rounds of letter writing, took out huge newspaper advertisements, and raised hundreds of thousands of dollars for the legal defense. In May, when my local newspaper ran a photo of a smiling Burzynski trailed by the little boy who was saved, I knew without reading the story that Burzynski had been acquitted.
Two years have passed since I stopped using antineoplastons. I still catch my former doctor on television news and tabloid shows. He is always posed the same way, standing authoritatively next to MRI brain scans, pointing out the changes. First scan, deadly tumor. Second scan, after treatment, no tumor.
Every now and then a desperate patient sees my name in an old newspaper article and calls, seeking information about Burzynski, just as I had done with patients before me. I am never quite sure what to say. Such hope and yearning wait on the line, it is not right to squelch it. I think of Maria, who is still infusing antineoplastons for the remaining sliver of her brain tumor but who is alive and relatively active years past her prognosis for survival. This person on the phone does not have a brain tumor, though; she has ovarian cancer, something that Burzynski, I assume, would say he’s not sure antineoplastons can be effective on. But he’d be willing to try.
Willing to try. How can someone facing death disregard those words from a doctor? A part of me wants to tell the caller just to enjoy what’s left of her life, not to bother with long shots that might make those last months miserable and cost her family’s savings or her house. But I can’t say that. Even if the chance of antineoplastons working is one in 100, what if I’m discouraging that one?
My response would be so much simpler had Burzynski lived up to his responsibility as a scientist and healer by working with others to collect statistics on his medicine. But he didn’t.
After I discontinued his treatment, I requested that a copy of my records be sent to me. Flipping through page after page of recent daily entries, I read, “Condition unchanged… Patient doing well,” “Patient feels good.” I checked the name at the top; it was mine, although I couldn’t remember a single time in the past six months I had felt “good.”
The FDA released preliminary data from the clinical trial earlier this year showing that more than half of the treated patients had high levels of sodium in their blood. The condition may have contributed to seven deaths. Burzynski disputed the finding.
The wealthy businessman and his wife were among the patients at another congressional hearing this spring. This time they rallied passionately for the Access to Medical Treatment Act, which is currently being decided in Congress.
I can see both sides of the argument, for I have lived them. I believe in letting cancer patients try unproven treatments; had I been free to try monoclonal antibodies when I was first diagnosed, the lymphoma might have been wiped out in a few months rather than a few years. Yet when I look closer, the proposed law scares me. It means any doctor could claim to have a cure and prey on people desperately seeking help. It removes incentives for alternative doctors to conduct trials and contribute to science.3
I don’t know who’s right. But I do know that for 15 years the FDA and Burzynski have chased each other, spending precious time and money on legal battles rather than on contributing to science. Had everyone involved focused on what was truly important, antineoplaston therapy could have been proven or disproven as a viable treatment by now.
Instead, the cancer patient loses. And it shouldn’t take a brain surgeon, or an oncologist or the commissioner of the FDA to figure this out.
Footnotes:
- This article apparently appeared in a tabloid.
If this in fact happened, unless the Clinic had specific permission to release patient information, this would seem to be a big violation of patient privacy. It strikes us much in the same way the Clinic ghoulishly latched onto the story of Brittney Maynard, a cancer patient who made national news after electing physician-assisted suicide. According to a report in USA Today on 14 February 1994, when asked if Jackie was taking alternative therapies (which she was known to be interested in) her spokesperson replied, “I don’t believe so. She has great confidence in her doctors.” - Nurses at the Burzynski Clinic have said things like this for some time, apparently. According to a 2000 article in US News and World Report which covered the story of Burzynski Patient Andrea W., who had a different tumor:Over the following six weeks, [Andrea’s mother] says, her daughter suffered side effects ranging from disorientation and high fevers to constant thirst. She and her husband […] repeatedly complained to clinic personnel. Each time, she says, “the nurses were jubilant. They said this [side effect] was a sign the tumor was breaking up.”Andrea was dead within the week. Burzynski’s staff have been feeding people this line for decades: getting worse is getting better. See the cases of Evan W, Justin B, Georgia M, Cody G, Leslie S, Domenica P., and Chase S. Think of Amelia S. And then think of the nurse who told John D.:“[…] she’s been there for 10 years & has seen this before & many times, the more severe symptoms that are seen as a result of the therapy is really a good sign that it’s working better.”Now we can add Cari U. to this list of patients who were misled.
- This is precisely the problem with so-called “Right to Try” laws. One such law just passed in Texas this summer.
Again, and as always, special thanks to the skeptical research ninja whose tireless work has made this article possible.
Burzynski Patient Derek W.’s story
As Stanislaw Burzynski heads to court again to answer charges made by the Texas Medical Board on behalf of a variety of patients, he is doubtlessly preparing by getting the testimony of current and former patients. In anticipation of this pony’s one trick, we are telling the stories of patients who have testified on Burzynski’s behalf over the course of his long, dubious career and see where they are now. Much of what follows is based on reporting from The Oregonian and on written testimony presented to Congress in 1996 in the same hearing in which Douglas W. testified.
Derek W. was just 7-years old but already knew what he wanted to be when he grew up: a preacher. His proud parents nicknamed him the “preacher in sneakers” and ensured he was active in their growing church congregation. Derek also enjoyed participating in his local cub scout troop.
On November 6, 1995, Derek’s parents received the devastating news that Derek had a deadly tumor in his upper brain stem. According to his dad, the news was bleak, so they scoured the country for a solution:
Without treatment he was given 3-6 weeks to live. With paliatory treatments, primarily radiation, he was given between 4 and 18 months. As any parent in our position would, we researched all known traditional and non-traditional cancer treatments.
The doctors’ recommendation of radiation was not likely to be curative. So the family decided to try Burzynski’s treatment antineoplastons because it “appeared to be based on firm scientific data.” Derek’s dad said Burzynski “felt that his success rate was as high as 20%,” but the trusting father acknowledged that the number “was not scientifically documented”.
Sadly, the data released by the Burzynski Clinic over the decades has been notoriously misleading. Indeed, the 20% survival number remains unsubstantiated even two decades later. And yet, other desperate families are still under the false impression that antineoplastons have been demonstrated to be safe and effective.
For example, the family of McKenzie L. thought she had a 27% chance of survival by being pumped full of Burzynski’s concoction. To a desperate parent, a 1-in-5 or better chance certainly sounds infinitely better than the 0% chance that brutally honest cancer doctors sometimes are required by ethics to provide.
The mother of Brendan B., who paid $10k to the Burzynski Clinic in 1991, describes the psychology in a 1996 New York Times article:
“I would have gone out and stood naked in traffic,” Mrs. [B] said. “I would have died in his place if that were possible. I would have done anything to make this child live.” Dr. Burzynski, she said, “offered us a thread to cling to.”
When she and her son Brendan were in Dr. Burzynski’s office, she said, “a very interesting thing happened.” She explained: “I got caught up in this whole thing with all these sick people, people coming and saying they were cured. I feel so stupid even talking about it because I am intelligent and educated and so is my husband.”
She believed in Dr. Burzynski, in spite of herself she said, because “this beautiful child is dying and here’s this person who may possibly have something.”
In addition to Burzynski’s treatment, Derek received radiation as recommended by his oncologists. His father is hopeful that the tumor’s lack of growth is a good sign:
We had an MRI that showed no new tumor growth since we began Dr. Burzynski’s medicine. We still feel [Derek’s] situation is shaky, and this does not mean the medicine is working for sure. It is our one and only hope. Without it, he for sure would die. With it, we still have a chance.
If only Derek’s parents had been able to speak to Mrs. B, who said, “It’s fine to say Dr. Burzynski offers hope, but you have to have hope in something that’s not ephemeral.”
And if only Derek’s parents had reviewed the results of a 1982 visit to the Burzynski Clinic by Canadian doctors. The doctors’ report contained a horrifying picture of what was happening in Houston, according to the 1996 NY Times article and a Usenet posting:
We were surprised that Dr. Burzynski would show us such questionable cases. We were left with the impression that either he knows very little about cancer and the response of different tumors to radiation and hormonal measures, or else he thinks that we are very stupid, and he has tried to hoodwink us.
As we look back over the cases were were shown, we are left with the impression that the only patients who are still alive either had slowly growing tumors, or had received effective treatment before being referred to Houston.
And the Canadians reportedly concluded:
After reviewing 20 case reports, selected by Dr. Burzynski as his best examples of clear cut responses to Antineoplastons we were unable to identify a single case in which therapeutic benefit could be attributed to Antineoplaston.
[…]
We believe that it is unethical to administer unproven agents such as Antineoplastons to patients without satisfying the requirements of the FDA and an ethics committee, that the minimum standards for human experimentation are being met. We also believe that it is immoral to charge patients for this unproven, experimental treatment.
What’s true in 1982 is still true today, since the American Cancer Society agrees that “there is no convincing evidence showing that antineoplastons actually work.” In fact, Burzynski has, according to FDA inspection records, a horrible time satisfying them that his evaluations of his trial outcomes are accurate. Indeed, the FDA recently found that his outcomes are inflated 2/3 of the time.
Derek died of his cancer on December 13, 1996, just over 11 months after his diagnosis. There is no available evidence that antineoplastons improved Derek’s survival.
Derek’s parents wanted to create a special memorial to their son. So when their church expanded to include three 40-foot crosses, they made sure one of them was dedicated in memory of him. The crosses were made of steel and shared their message at least 2 miles away.
Derek’s mom thought the memorial cross was a fitting way for her “preacher in sneakers” to continue to preach: “You want a chance to remember the person who died and to have their dreams live on. [The cross] is a testimony to our hope.”
Burzynski Patient Amelia S.’s Story
[This is a repost of an earlier story.]
As Stanislaw Burzynski stands in front of the Texas Medical Board to answer for yet another litany of abominations, patients are no doubt gathering to protest in front of the courthouse so they can beg for their lives. Many of his supporters in the past have been then-current patients who were convinced that Burzynski is their only chance at life. Burzynski’s patients often have dismal prognoses and their prospects do not improve when they buy into his medical adventurism. In anticipation of such patients being used as human shields yet again, we are focusing on stories of people who have testified on Burzynski’s behalf, begged for their lives in courts and in the public, but who of course died anyway. These patients, so far, include Burzynski patient Elke B., Burzynski patient Douglas W.,Burzynski patient Janet C., Burzynski patient Sen. Ed G., and McKenzie L. These patients may not be testifying in the upcoming trial, but their stories are perhaps the most important and are far more eloquent and revealing.
Last week, we posted about the patient who had perhaps the most high profile campaign in the US in recent years. This one is perhaps the biggest in UK in recent years. The case of Amelia S. is a hard one to write about, because it tipped skeptics off to a pattern in the stories that patients at the clinic were telling, that their worsening symptoms were signs of improvement. As you will see, this is a story that Burzynski’s patients have been relating for decades. It’s a long post, but it’s important that you read to the bottom.
***
3-year old Amelia S. lived in Reading. In about September of 2011, Amelia started displaying neurological symptoms–wobbliness and a trembling left hand (often drawn into a fist). The family brought her in to the hospital after she started falling down. On Jan 30th, 2012, she was diagnosed with a brain tumor, and on the 1st of Feb it was determined to be a large tumor on the brainstem. Surgery revealed a grade 2 diffuse astrocytoma, which the family was given to understand meant that the core of the tumor was likely grade 3. Doctors were unable to remove much of the tumor, only the 4 biopsy samples.
Amelia’s medical team was honest. The benefit offered by radiation and chemotherapy, on average, could be measured in weeks. These are bad, bad tumors. The family brought Amelia home on the 20th of February, her mobility and speech impaired, opting to spare Amelia the unpleasantness of the chemotherapy and radiotherapy. When they saw Amelia improving (we’re not told what those improvements were–whether they were reduction in tumor size or reduced swelling as she recovered from surgery, for instance), however, family understandably felt obliged to look for other options.
They found Burzynski. Immediately, the enormous price tag of his antineoplaston treatments spurred the family on to raise funds. Amelia’s father began documenting their journey to Burzynski in a couple of places, at ameliasmiracle.com and on a Facebook page of the same name. As a whole, his story is the most moving and insightful account of parental heroism that I have read since I began this project, and I strongly recommend that you read it for yourself.
By the end of February 2012, the family had decided on Burzynski. We were introduced to Amelia on February 28th in a video posted by her father:
Attached to the video was a simple plea:
Our daughter, Amelia, was diagnosed at the beginning of February with a very rare type of inoperable brain tumour. She has only a few months to live. We have a ray of hope – treatment for her is available at the Burzynski clinic in Houston, Texas. This treatment in total will cost around £200,000. We need to raise this money to allow Amelia to have the chance to live a normal life.
From the beginning, the family sought media attention to raise money for the Burzynski Clinic, as we see in a Facebook post. the earliest example of Amelia’s story appearing in the press was in the local Wokingham Times on 8 March 2012. The public campaign was launched. And by 14 March, £45,000 had been raised by the community, enough to get Amelia in the door at the Clinic (recent accounts put that initial consult at $30,000). The Wokingham Times seems to have informally adopted the family and followed their progress closely for the rest of the year. These community fundraisers appear as human interest stories and reaffirm that people are basically kind and generous and trusting. In fact, my first exposure to Burzynski and realization that something was profoundly wrong came after I did a newspaper database search for all of the patients that I could find. Of those patients I could find an outcome for, every patient who appeared in the international press, usually begging for money, with a single exception was dead.
A week before Amelia hit the papers, on the 6th of March, Eric Merola, who made an uncritical hagiography to Burzynski unironically called, Burzynski: Cancer is a Serious Business, interviewed the family about their upcoming trip to Houston for his new movie, a sequel, which comes out soon. He planned to follow Amelia’s progress in the film. On the 17th, as they planned their trip to the US, the family put up a short video for Amelia’s donors:
So, she clearly she packed everyone’s hearts into her suitcase. Such a dear.
They left on the 23th of March for America, having raised a staggering £75,000 for Burzynski. In a Wokingham Times piece, her father stated some of the opposition that the family had met:
Mr Saunders added that he was amazed at the number of people who had suggested the American treatment would be fruitless.
He said: “I was warned about this before we decided to go with the Burzynski treatment – it is like there is a vendetta out against the man.
“It is so strange, and all I keep getting are contacts from patients who have been or are being cured by the treatment, or at the very least have had positive results.”
People for whom Burzynski’s treatments fail tend not get into contact with other patients. We are witnessing what is known as survivorship bias. You can talk to a dozen survivors and have a positive impression of a treatment but fail to take into account the 10,000 failures, which would put a treatment well below the efficacy of chance remission, misdiagnosis, and unrecognized responses to traditional therapies. This is why controlled trials are so important to determine efficacy, so we can sort out the background noise of chance from real effects. It is also an important reason that dependence on patient testimonials is a red flag for quackery.
Amelia has had a hole opened in her chest where a Hickman line has been inserted, where she will receive her ANP. These frequently have complications with infection and clogging.
By the 30th, Amelia has her backpack full of antineoplastons, as we see in a video. Her family will spend the customary 3 weeks or so in the US learning to administer the ANP themselves. They are infused at high doses almost continuously.
Amelia’s dad shares his first impression of the Clinic on the facebook page:
The clinic have been fantastic. I am still amazed that people give them such a bad press. They have literally bent over backwards to get this started for us. The receptionist Irena even has a photo of Amelia behind her desk, she is so lovely!
Well there is a reason, of course. It’s because they apparently tell patients that they can tell brain tumors are shrinking by looking at their urine:
Mr Saunders said: “Every day is a milestone and the clinic is being extremely thorough in its tests – Amelia has regular blood tests and these are all closely monitored to check for signs of all sorts of things.
“Interestingly, they can actually see the early signs of the tumour breaking down by how her body excretes it in her blood and urine. This might be the only time in my life I get excited by seeing this kind of information!
I’m not sure what this is supposed to mean, and before Amelia’s story I would not have even noticed this. I can see why a parent clinging to hope would sieze onto any augury of healing. Remember, this family has not had good news about Amelia since her diagnosis. Little steps, literally, mean the world to them. I contacted research oncologist David Gorski, who studies and treats breast cancer, about this claim, and he replied:
“Oncologists don’t monitor anything in the urine for tumor breakdown, at least not for that tumor. There is such a thing called tumor lysis syndrome, but that’s usually only seen in leukemias and lymphomas as a result of induction chemotherapy that kills a lot of cancer cells really fast, releasing potassium, and a number of other byproducts. However, as I said, you don’t generally see this in solid tumors (mainly because none of them respond nearly as dramatically to chemotherapy as hematological malignancies). It’s also a complication to be managed, because its most frequent result is renal failure. It’s possible that he’s referring to GFAP, which is a biomarker for glioma under study, but I don’t think it’s really been validated as a measurement of response to therapy.”
There are apparently no biomarkers for glioma that appear in urine. Amelia had chronically low potassium at this point in her treatment.
We don’t see a lot of what is going on at the clinic on facebook, where most of the story is told record, but we get a clue on Amelia’s other website:
10th April 2012
I realised I hadn’t updated the news section here for a few weeks, this is largely because we update our Facebook page daily and much of our time has been taken up going to and from the clinic. Every day has been a bit of a rollercoaster here. Amelia has been on antineoplaston treatment for a week and a half and at the end of last week we hit a bit of a wall with the treatment dosage. Amelia got pretty sick so we had to back down on the dose a little. Yesterday she started getting really bad headaches so we have now also put her on a low dose steroid as well. Other than this, she is doing well and responding well to treatment. We think there are some very slight improvements in her coordination of her left hand side. We are continuing the treatment, and the aim is now to increase the dosage more slowly to see how she responds. All in all we are doing well and looking forward to coming home soon!
So, she’s been up and down. The steroids are a recurring feature of treatment and can very quickly reduce inflammation in a way that leads to improvements of the type that the family is reporting. You see it a lot on this website. It’s hard not to think of John D., who experienced worsening symptoms while under treatment (and on steroids), which was met with joy on the part of the staff:
I want to mention that the IV nurse told mom today that she’s been there for 10 years & has seen this before & many times, the more severe symptoms that are seen as a result of the therapy is really a good sign that it’s working better. I know this nurse & she is very honest & helpful. She also runs the class they run every week for new patients.
On April 19th we hear that the family is preparing to return home, and on the Wokingham Times page where it is announced, we see that damned picture again, patients literally at death’s door, posing in front of the Burzynski Clinic. We get the update that they have arrived back in England on the 22nd. Amelia’s dad talks about the fundraising (truly amazing acts of generosity by the whole community) and how grateful he is for the immense support that the family has received. (Amelia gives her own thank you’s in an adorable little video a few days later.) He speculates on the road ahead:
I have come home from Houston with a strange kind of feeling. Perhaps a little apprehension, a bit of fear, a dose of happiness and a shot of hope. We still feel that every day is a roller coaster. We may be sitting on a ticking time bomb, and it may still be that any day we might lose Amelia. Every day truly is so precious, and it is a joy to watch her and her little sister back together again, albeit in a different way, a more careful one, where we have to watch them all the time.
The next day, it sounds like Amelia is having the unquenchable thirst that comes with ANP:
Amelia has been OK today, she was a bit sick earlier but we think this was because she drank too much too quickly – she was fine shortly afterwards. We’ve been getting used to life again at home and putting everything in place we need to.
And we hear that she is due for her first post-treatment MRI:
As far as the MRI goes, I just want to make a point that we aren’t expecting a lot to have happened with this next scan. As part of the medical trial we are required to get a scan done every 4 – 5 weeks – and these things take time to show any change. It is very likely the tumour may be the same or have grown slightly. This is fine and we expect this, and clearly if it has shrunk then great – but we aren’t expecting it to have done.
Tumors on which chemotherapy is working should probably not be growing at all. It’s the definition of “working.”
Today has been a busy day. Unfortunately Amelia was pretty sick this morning – those of you who have been following our journey will know that we are trying to increase Amelia’s dose of drugs and it sometimes has side effects, this seeming to be the most common. She was fine afterwards and has been eating for the rest of the day.
We had an appointment at the hospital at lunchtime and ended up spending most of the afternoon there so we could get everything sorted. The doctors here are being very cooperative – but I must emphasise that they are recommending different treatment (chemo) and we have consistently turned this down. We have not found a single person with a DIPG tumour that has had any effect with chemo – so continue to find it strange that this is offered. Our plan is to continue the antineoplaston treatment for as long as required. We realise this is being frowned upon by the doctors here – but ultimately we are trying the only thing we found that had credible results.
Credible results would have been publication and replication of his trials. Burzynski can’t seem to complete his trials, much less publish them (which is odd given that he has the test agent already developed and the tumors he is working have outcomes comparatively rapidly). If trial completion were a batting average, he’d be at .015 and his trial publication average would be .000.
By May 4, Amelia is a celebrity. They have raised £160,000 (!) and she is meeting and hanging out with celebrities. And the paper has clearly been reading Amelia’s dad’s updates. Also, her dad’s website announces:
Well we have now been back from Houston for a few weeks – and Amelia has continued to slowly improve with both her walking and speech getting better. The Burzynski clinic were brilliant – we were made to feel so welcome and Amelia really made an impression on everybody there!
We had an MRI scan on Monday that revealed her tumour has stopped growing. Considering she has had no treatment other than the antineoplaston therapy from the Burzynski clinic, we are really pleased (and impressed) that the treatment seems to be working so quickly. We are now continuing the treatment and increasing her dose such that we try to get her to the ‘target’ dose for her weight.
This tumor “stopped growing” news is taken as validation that the treatment is working, so much so, that the Wokingham Times irresponsibly reports that result. According to her dad:
1. Amelia has been on treatment for less than 4 weeks.
2. She is not on full dose yet, and has some way to go to get there. This is a slow progress, perhaps taking another month or so to achieve this (or more).
3. She has a low grade tumour. Any response will be slow. In other kids where the treatment has worked it has taken many months to show response.
4. She is still on steroids.
5. Her previous scan showed a 13% growth in 7 weeks.So, having now had several opinions of the scans, I can confirm that Amelia’s tumour has STOPPED GROWING. This is amazing news and we are over the moon that this is the case. For this tumour type, in this short time, with a tumour of the size of Amelia’s, this is an incredibly good result. This is an INCREDIBLY hard tumour to do anything with, one of the hardest to treat and normally very lethal. In most circumstances Amelia would no longer be here (in February there was no way we thought we’d get to May with her) so to have the thing stable is fantastic news.
A few important points. It’s a low grade (slow growing) tumor. This does not seem to have been a PET scan, which would give a sense how of active the tumor was–to see if it had in fact “stopped.” And initial responses to chemotherapy (and ANP is chemotherapy by every definition) correlate poorly to outcomes, which is, of course, the final goal that everyone involved is keenly interested in. Of course, the Clinic doesn’t convey that information:
I also had a good chat with our doctor in Houston earlier. Again all sounding very positive, and we have again increased Amelia’s dose tonight […] The clinic sound very positive that Amelia’s tumour stopped growing so quickly. Let’s just hope we have more positive news on the next scan in June.
On 12 May, we get an update about Amelia’s progress:
Amelia was on top form today, she was pretty tired after the wedding but perked up and during doses, when we unplugged her from her backpack, she was really bubbly. Later in the afternoon she was doing some proper walking – unassisted. I think we have now realised that a lot of the walking problem now is just her confidence. She was walking almost normally, and certainly the same or better than she was before her operation. Fantastic.
So, they are at point zero, which considering where they have been is wonderful from the family’s perspective, but it doesn’t tell us that the ANP is working of if she has just recovered from surgery to her brain stem and is now on steroids. And this may be important, as dad mentions on the 20th:
She really has improved. We’ve both noticed significant improvements in her speech, mainly in the quality of her pronunciations and also the speed and which she speaks. Slow speech is a classic symptom of her tumour location, so any improvement is a good sign here. This might be the steroids causing this improvement so we have to be careful, but we have a lot of fingers crossed we’ll be taking her off the steroids within the next few weeks if we can get her second bag to target dose. We’ll see.
Amelia has been a bit groggy, fairly lethargic and pretty reluctant to do a lot. […] Because of the lethargy, the doctor in the US has recommended increasing her steroid dose very slightly. We’ll see if this improves things – if it does then this is a good sign. It does all tie in with us increasing her dose, which is now at maximum on her larger bag. No wonder.
Also on the 21rd, just over a year ago, the fundraiser reaches its goal of £200,000, and the tally continues to climb. In the intervening time, however, we hear that Amelia has had some complications with the Hickman line, which has been replaced because of a tear:
She is doing well otherwise, and we’ll be resuming her treatment tonight. She is now walking by herself, her coordination and balance have all improved and her speech is much better. It looks like the treatment is definitely helping her.
In early June, dad is rattled by the deaths of patients Billie B. and Supatra A., who had the same tumor as Amelia, and for a few days he rails against skeptics. Apparently some have been contacting him and criticizing him. This is wrong, in my opinion. Cancer patients have enough on their plate.
On the 21st, we hear that the tumor remains stable:
Firstly we are waiting on a further interpretation from Dr Burzynski, but as we suspected from our own view of the scans this morning, Amelia’s tumour remains stable. In other words, there is no change since the last scan.
The family accepts this as a sign that they have stayed the brain tumor:
We are 100% sure that without antineoplastons, Amelia would either be in a hospice by now or dead. She has a grade 2 tumour, on scans it appears as a grade 3, and it is very large and in a very dangerous part of the brain. Even a few mm of growth would cause a significant impact on her quality of life at this size. We are all walking on a knife edge. Dr Burzynski’s treatment is undoubtedly keeping her alive. I actually want to wave this in the face of all the skeptics we came across along our journey.
It’s worth noting that the tumor hasn’t shrunk. Small victories–including just not dying–are huge when your child has one of these tumors.
Amelia has her 4th birthday on the 22nd of June, and it is celebrated in the papers.
Again, we see that the steroid dose is being increased on June 25th to control the symptoms of the disease:
We have been advised by the clinic to increase her steroid intake back to how it was last week to see if we see an improvement in her. We will then try in a couple of weeks time to reduce it again but at a slower rate, reducing it by 0.25mg instead of 0.5mg per day. The steroid intake is a tricky issue as they are essential and help reduce the symptoms of this awful disease (headaches, tiredness), however long term steroid use is not good and cause side effects such as weight gain, muscle problems.
We still haven’t seen anything that looks like clear evidence of improvement past diagnosis; it sounds like the symptoms return when the steroids are tapered. She seems to be doing pretty well on this dose of steroids, going to school. (Her last day of nursery school is 11 July.)
Well – we have had a pretty good weekend. I had a truly amazing conversation last night. Purely by chance I’ve been contacted by the mother of another little girl, who is almost the same age as Amelia, who is receiving the same treatment (for longer), with the same tumour (DIPG) and her tumour just shrunk. By 36%. We are so, so pleased. There is so much hope in our hearts now.
I’ll just briefly mention how frustrated we still are to read so much crap on the internet about Dr Burzynski. I feel like we are ‘insiders’, in a way, and know how the whole thing works now. These doubters clearly don’t. The lady I spoke to last night was told her daughter would die. When she went to Burzynski, her doctor shut her off. Refused to speak. Thank God she chose to follow her heart, and not that doctors advice. She might just have saved her daughters life. There is no doubt this works, and we want it in every hospital in the world. We’ll keep spreading the word until it is.
This child, sadly, is now dead.
By August the tumor has not shrunk, but Amelia has been coping very well. A few weeks earlier she had a wonderful day at the zoo. She’s still a little wobbly on her feet and in the pictures her family put on the Facebook page, you can tell that her face is not symmetrical, but by God she’s enjoying her life, which is an immense thing in itself. On the 6th however, she gets pale and sick; when her blood work is done, they find that her potassium and magnesium are way down, though they stabilize her.
On August 8, we hear:
One of the many things I have said throughout this year is that I hope that maybe, one day, I can learn that another child has had success with this treatment because of the inspiration they gained from Amelia. I know of one little girl, Chey, who is waiting to go to the clinic right now. But due to some complications with the FDA and the clinic, there are some delays – but we are all hoping she will get there very soon. We felt so welcomed by the Burzynski clinic and everything we saw there made us puzzled why so many people don’t believe in it.
We just found out exactly what happened. According to an SEC filing:
In a letter dated June 25, 2012, the [Burzynski] informed the FDA of a serious adverse event which may have been related to the administration of Antineoplastons. On July 30, 2012, the FDA placed a partial clinical hold for enrollment of new pediatric patients under single patient protocols or in any of the active Phase II or Phase III studies under IND 43,742. The FDA imposed this partial clinical hold because, according to the FDA, insufficient information had been submitted by the Company to allow the FDA to determine whether the potential patient benefit justifies the potential risks of treatment use, and that the potential risks are not unreasonable in the context of the disease or condition to be treated.
According to the mother of patient Alynn H., her understanding was that a child had died (link is password protected). We have not heard anything else, only that the ANP trials, almost a year later, have not started up again and that the partial hold remains.
On August 13, Amelia’s dad posts a video about Amelia’s life since diagnosis. This write up an unusually long post for this blog, and I haven’t done justice to the support the family has received from their community or the sheer number of people who pitched in to help the family, and this video gives a sense of that:
On the fifteenth, we hear that the family is understandably anxious for the tumor to shrink:
Incidentally, we are well aware that a stable tumour is good. Mondays scan was one that we went into thinking ‘if it is stable then great’. I’ve had a few people come up to me and ask “is the tumour shrinking?”. Now I know people mean well – but it is a little like me walking up to somebody and saying “have you won the lottery yet?”. In other words, frustrating. I smile, say no, it will take time, and move the conversation on.
So far, the tumor’s behavior has been utterly unrelated to the dose of the antineoplaston chemotherapy. On Aug 25, we hear that Amelia is tired on treatment and that she has had a progression of symptoms:
We are still looking to increase her dose slightly as she has gained a little weight since Houston so she should be able to tolerate an increased dose (or at least we hope so). We will probably have to increase her steroids in line with this, but we have been considering this anyway as she seems to have become a lot more wobbly lately. We know from the MRI that the tumour hasn’t grown so an increase in her steroids should help this.
Now, I’m not sure how this was verified. The definition of a “stable” tumor can actually accommodate some growth, so, we can’t know exactly what is happening. And we hear from the family a few days later that they have come to a hard realization:
On the 27th, we hear:
Firstly, Amelia hasn’t quite been herself unfortunately. She has been very reluctant to walk, a lot more tired, slow and pretty lethargic. She was sick on Saturday night also. We are reasonably confident we have probably gone too far with the steroid reduction so we have actually increased these slightly again today. We decided we would rather have a happy and more alert Amelia than one who doesn’t want to do too much – so we made this decision today in coordination with the Burzynski clinic. We’ll see how she does. There is a small chance it is the tumour growing, but much more likely given the scans we have that this is due to swelling of the tumour caused by the treatment. Time will tell. […]
The symptoms we are seeing right now are a direct result of the tumour, hopefully due to it swelling, and the steroids will fix this. They are also what we would see if it has grown.
It really, really looks that her wellness is linked directly to how much steroid she is receiving. And here’s another example of something that is…desperately, desperately wrong at the Clinic. The patient is being told that the tumor is swelling because of the treatment. How is it that only at the Burzynski Clinic that getting worse is indistinguishable from getting better? Second point: this is a tumor on the brainstem. If a possible side effect were swelling of the thing pressing against the brainstem, you’d expect that to be on the informed consent form, right? The type of thing that would be among the “serious side effects,” right? It’s not, at least not in a version of the consent form used after Amelia had started ANP:
(Burzynski’s supporters who have been saying that the treatment has no long-term side effects would do well to look at that first paragraph. The paperwork that every patient signs says it can have exactly that.)
On September 5th, we see a candid moment on the facebook page. The parents are committed to seeing this therapy through, but the father has that lingering awareness that this nothing the tumor has not shrunk:
Whether we have returned to a feeling of optimism or not remains to be seen. I still feel uneasy about the fact that we are so far on without the tumour shrinking. It is frustrating, because we have worked SO hard with the treatment – our entire lives are ruled by it and it is almost a full time job sorting it all out – we just share it between us and make it happen. We just know to be patient, and we 100% know it can work.
At this time, Amelia was returning to school (she had already been going to nursery school on treatment). And the way it appeared in the press, and certainly how I and other skeptics read it, it was being promoted as, “See? This treatment is working enough to let this little girl go back,” a human interest story (The Mirror’s coverage was profoundly disgraceful–suggesting UK doctors “refused to treat” Amelia, whereas when you look above you see that in fact: “The doctors here are being very cooperative – but I must emphasise that they are recommending different treatment (chemo) and we have consistently turned this down”), and by god it was good to hear that Amelia was having a great time, but there’s a lot more going on than is contained in the articles. On the 5th we see how much support was needed to get Amelia in. This was not the return of a healed child that everyone took away from the coverage:
“There has been a LOT of organising around this, far more than getting a healthy child to school. We’ve arranged our nanny, we’ve had to work around the school timetable, we’ve had meetings with the school and the teachers and the hospital nurses and made everything happen. The school have been absolutely fantastic every step of the way – we literally cannot fault them.”
On the 8th, we see on the Facebook page:
“On Monday we have a physiotherapist coming to look at her to see if she can get her walking again. I tried a little walking with her today and she is really, really trying. You can see she struggles, like her brain doesn’t know how to do it but the conscious Amelia that we see and know does. It’s a bit like trying to write with the wrong hand – you know what to do but you can’t quite make your hand write as well as the other. She tries to walk, but can’t quite make it all fit.”
This is not a child improving.
September 10, on they were visited by Eric Merola for his utterly uncritical documentary about Burzynski. More on that in a moment.
On the morning of the 15th, Amelia woke up crying with a pain in her head. She went off treatment for a day or so and got better, not trembling, perhaps speaking a bit better. One wonders if she is not experiencing relief from the hypernatremia that can appear alongside such massive sodium doses and can have such side effects.
Amelia has a great couple of days in late September (and she really takes to her school!), and her dad talks about how the awful waiting game goes in between MRIs, which I have learned is how time is measured by cancer patients:
I’ve said this many times before, but the really frustrating thing for me is not having anything really tangible that tells you this is working, until we get the scan image in front of us. This means an 8 week wait between scans when you really have no idea what is going on, and if she gets worse like she did a few weeks back then I think you naturally assume the worst. Then she gets better, and you relax a little!
The October MRI shows no change. But later that month, the family is trying to come to grips with what life will mean in the likelihood that Amelia is not with them. It’s a beautiful post, and I hope you read it. It’s immensely sad and healthy and you can’t help but feel the full force of their grief and fear. This family is mentally preparing themselves for a horrible future, and this makes what happened next absolutely inexcusable by any measure.
By November 19th, Amelia’s right hand is immobilized, a clear progression, and the family gets the results of a recent scan:
What I don’t want to do is get ours, and everybody else’s hopes up about things. I could not bear thinking that this is working and then to be told it isn’t. (emphasis added)
What I will elude to is that the Burzynski clinic feel that there is a cyst forming inside Amelia’s tumour, very slowly. This does seem apparent on the scan images but we want to make sure this has grown over the longer timeframe. A cyst will form where there is cell breakdown, so clearly is a good thing from a ‘killing the tumour’ viewpoint, but possibly bad in that you then have fluid in a very difficult place to get to. We’ll address that little hurdle if we get to it being a problem in the first place.
This sounds exciting (it is), but we are really trying to be careful about getting too much so. Amelia has got worse, although she has had some improvement over the weeks before her MRI. This could be due to a number of factors and we know the tumour has not grown.
Another point with this is that the tumour isn’t shrinking, but if a cyst is forming then it might be some time before the tumour does shrink. We’ve always said that due to Amelia’s tumour being very slow growing, we have more time on our hands more than most kids who get this.
When this news was released on the family’s Facebook page, followed by rapturous confirmation the next day, it was brought to the attention of Orac at Respectful Insolence, who gave an honest medical opinion:
It pains me greatly to do this, because, no matter how I write this, it will be perceived as trying to take away the hope for Amelia’s survival that the Saunders family holds. Such is not my intent, by any stretch of the imagination. However, these “cysts” almost certainly represent areas of ischemia (low blood flow) leading to tissue death as the tumor outgrows its blood supply. This is a phenomenon commonly seen in advanced malignancy. I know this because tumor angiogenesis ia one of my areas of research interest. […]
Sadly, then, seeing “cysts” growing in Amelia’s tumor most likely says nothing one way or the other about whether or not it’s responding to Burzynski’s antineoplastons. That’s assuming that Burzynski’s interpretation of the scans is even correct, which I wouldn’t bet money on. Most likely, these “cysts” indicate that there is no therapeutic effect. I take no pleasure in saying this, but most likely this is true.
Amelia’s dad was understandably upset and actually responded to Orac on Nov 29th, but the day after Orac posted, the family updated their followers:
We know that some people doubt what we are doing. We understand that it is in human nature to question, and many people will not just take something on faith alone. But, ultimately, this is our choice. And that choice seems to be paying off.
Yesterday I sent a CD with the latest MRI scans on to our local oncologist and I’ll be waiting for their opinion. We’ll consider this, and then continue until the next scan and see if the cystic formation that we have been shown grows in some way. I don’t want anyone to think we just take things at face value and accept them – we consider what we see, what we are told, and get as many opinions as we can. We can see with our own eyes though that something has changed with the tumour and we hope this continues. Amelia’s tumour hasn’t enhanced or progressed, so we know it is unlikely to be anything other than cysts, but we will get that second opinion for sure.
Amelia had a magical week. She won a community award, the “Child of Courage” award, and was literally the star of a Nativity play with her friends. The reality of Amelia’s situation soon came upon the family, however. On 2 December:
The truth is, Amelia isn’t getting any better neurologically. We live with her every day and we see it. She is very slowly deteriorating and I think we would be putting our own heads in the sand if we didn’t accept this. On one hand we have the Burzynski clinic who believe the tumour is beginning to die. We are getting opinions here about this theory and we’ll very likely need another scan of a different type in early January to back this up. Everything is based on opinions – and nobody agrees, which makes it all very hard on us.
And the final assessment from the Great Ormond Street Hospital:
We had our meeting at Great Ormond Street yesterday and, sadly, they just don’t have anything for us. We kind of knew this before we went – but wondered if they might have a trial that we could take part in. Unfortunately they don’t.
They felt that Amelia is in the latter stages of the disease, and that what is called ‘progression’ has already started. This means her tumour is growing, the cancer is spreading and we don’t have a huge amount of time left. Again we had already guessed this was happening but it was good in a way to have another opinion of this.
Were it just a one-off bad interpretation of an MRI on the part of the Burzynski Clinic, we might have been able to write this off as a simple mistake. But it’s not. Not by a long shot.
- We first noticed this pattern in the story of Amelia S.
- The family of Haley S heard this (also, see the clinic’s heartless reaction to a stroke that the child had).
- The Clinic gave the same prognosis to Justin B’s family in 2006.
- We see a similar cyst in Leslie S.’s story (2006), and it nabbed Burzynski an extra $7,500 before she died.
- We see it AGAIN–as far back as 1994!–in Cody G.’s story.
- We saw it again in the case of Samantha T.
- We saw it again in the story of Christy M.
- A similar story came from Georgia State Senator Ed G.’s story.
- In the most grotesque horror show we’ve ever written about, Burzynski himself tells the family of Chase S. the same thing. Poor Chase ended up lying in state in his family’s front room for months.
Had Burzynski not used this line on the family who had given him by far the most publicity of any other in years, this recurring theme might have slipped by unnoticed. But it’s clear that this is not just a coincidence, it’s an M.O. predicated on false hope that strings parents and patients along. And it’s been going on for decades! And it leaves patients utterly crushed and confused. The few skeptics who have been working these stories in their spare time have found case after case of patients thinking that getting worse is getting better (a partial, growing list can be found in this post). Consider that the cases written up at this website represent 1/10th of the total cases we’ve been able to find and will be bringing to you, that we have only found a small fraction of cases, mostly from the most recent years, and that this guy has been operating for over 35 years! My god! Imagine what that means!
In light of this, when Eric Merola, in his new movie, says in a series of title cards:
Two months after this interview, Amelia’s tumor began to swell and fill with fluid.
There was confusion and disagreement among between their local radiologists and the radiologists in Houston, [sic] about why this was happening–
So her parents decided to discontinue antineoplaston therapy.
[Then he cuts to a picture of Amelia’s obituary and says,]
“Amelia passed away with her parents by her side on January 6, 2013.”
…it is fundamentally dishonest. There was no confusion. There was the right diagnosis and Burzynski’s diagnosis, a story that’s been spun for decades to desperate parents, and it’s a goddamned disgrace that Merola suggests that the parents’ evidence-based decision could have been related in any way to the outcome.
Instead of the usual plea for a donation to St. Jude Children’s Research Hospital, which researches children’s tumors and provides care for free, we’d like to ask you to make a donation to Naomi House, the children’s hospice center that cared for Amelia’s family in the last days and which seems to be the family’s preferred charity.
If you want to take action, protect the vulnerable, and put reliable information in front of patients who might be looking into this Clinic, the Skeptics for the Protection of Cancer Patients (facebook page here) have put up guidelines about how to boost good information into Burzynski’s search results.
Burzynski Patient Douglas W.’s Story
As Stanislaw Burzynski heads to court again to answer charges made by the Texas Medical Board on behalf of a variety of patients, he is doubtlessly preparing by getting the testimony of current and former patients. In anticipation of this pony’s one trick, we are going to start telling the stories of patients who have testified on Burzynski’s behalf over the course of his long, dubious career and see where they are now.
Douglas W. was a Burzynski superstar. He was a helicopter crew chief in Vietnam and then became a corporate jet pilot. On June 26, 1994, according to a March 6, 1996 report in The Oregonian, Douglas received a bad diagnosis. He had a brain tumor, a glioblastoma. According to the report:
[Douglas’s] life gave way to surgery, 33 radiation treatments and four months of conventional chemotherapy. The worst still was to come.
In January 1995, [Douglas] and his wife, Lola, heard bad news from their oncologist: The tumor still was growing. The doctor told [Douglas] he had three or four months to live.
At this point, Douglas turned to the Burzynski Clinic and went on antineoplaston treatment. It was not cheap:
In the past year, his quest for life has taken him close to the center of a national medical controversy. He’s spent $75,000 traveling to Texas and paying for chemotherapy that his insurance wouldn’t cover.
Antineoplastons are the almost certainly ineffective chemotherapy that cancer quack Stanislaw Burzynski has kept “experimental” for 4 decades. Though the experiments have led to no reputable publications, he sure has managed to charge hundreds of patients top dollar for the drug derived initially from human urine and blood. Essentially, Burzynski posits that cancer is caused by a lack of “antineoplastons” in the blood, that cancer is basically an antineoplaston deficiency syndrome. No other physician on the planet recognizes this as a cause of cancer, and no competent physician says there is evidence of this alternative immune system that is supposed to take care of cancer.
Regardless, the reason why Douglas is a superstar is revealed in the next few paragraphs of the article:
Eleven months after he started a chemotherapy unapproved by the Food and Drug Administration, [Douglas] is in full remission. […]
Last week, [Douglas] testified before a congressional subcommittee investigating the Food and Drug Administration’s obligation to patients with life threatening illnesses. He appeared on “Nightline” with Ted Koppel in defense of Stanislaw R. Burzynski, a Texas doctor who has been giving unorthodox chemotherapy to cancer patients.
In fact, according to the transcript of the May 19, 1995 Nightline episode, Douglas was used as an example of “desperation”:
DAVE MARASH, ABC News: [voice-over] The first thing you feel in the waiting room of Dr. Stanislaw Burzynski’s Houston, Texas cancer clinic is the desperation.
DOUG [W.] My name is Doug [W.], and I’m from Estekay [sp?], Oregon, which is southeast of Portland, and I’ve got a- I don’t know what it is, but it’s a brain-
WIFE: It’s a glio- it’s a glioblastoma.
DOUG [W.] : -glioblastoma, stage IV.
Back to the Oregonian article, where we see some surprising endorsements:
[Douglas] is in the spotlight because his tumor, an aggressive, advanced stage of glioblastoma, no longer makes a blip on a brain scan. His remission amazed his doctors in Portland.
Dr. Gerald L. Warnock, a diagnostic radiologist with the East Portland Imaging Center, has evaluated four or five of [Douglas’s] brain scans in the past year. He said the most recent scan, in January, was totally clear of a tumor.
“I have never seen it happen before,” said Warnock, who has evaluated about 50 patients with brain tumors.
He said [Douglass’s] remission could be a delayed reaction to his conventional treatments, a miracle, or the result of antineoplaston, the drug administered by Burzynski.
Warnock said he is skeptical of unconventional treatments.
“One case doesn’t make a doctor a hero,” he said.
Still, Warnock is impressed with [Douglas’s] remission, because he’s seen his brain scans, both before and after antineoplaston.
“If I had a relative with that particular type of tumor, I think I would send him down there,” he said.
Dr. Bruce Dana, a medical oncologist who treated [Douglas] with FDA approved anticancer drugs, also is impressed with [Douglas’s] remission. He said he has never seen a glioblastoma disappear after earlier scans showed it growing.
By any measure, these doctors are being irresponsible. Going to the press with a data set of one person is irresponsible, especially when the stakes are so high, namely a treatment for an intractable tumor. This is not the last time we’ll hear from Dr. Warnock, however.
Of course, we have seen too much weirdness with Burzynski’s charts in the past (we’re thinking of the time that the FDA got two different sets of records, one from Burzynski’s IRB and a different one from the Clinic, about a child whose death sparked a federal investigation–whoops!) for us to accept the interpretations of anyone who has received records from the Clinic. This is a major reason that the definitive study of ANP can’t possibly come from Burzynski’s outfit. They have shown themselves endlessly incapable of maintaining charts and running clinical trials.
Douglas was out among the 75 patients protesting outside the courthouse as Burzynski faced federal charges in February 1996:
Doug [W], a patient of Burzynski’s, expressed hope that Lake will allow continued treatment. After being on the unorthodox treatments since last summer, [Douglas] said his brain cancer has disappeared.
“I had done everything my doctors in Portland told me to do and then after 33 treatments of chemotherapy and radiation, they told me to give up hope. They said I only had two to three months to live. But I wasn’t ready to give up hope. That’s why I came here.”
On the 29th of February, Douglas was in Washington, D.C. and had five minutes in front of a House committee as patients were paraded in front of congressmen and cameras to beg for their lives.
[…]
[…]
And here’s why Burzynski and his legal team use patients as human shields. Because patients channel their whole being, their entire hope into the campaign to keep their doctor, who they are allowed to believe is the only thing keeping them alive.
The next time Douglas appears in the media, it’s in the Peoria Journal Star on 5 July 1996, which opened:
Just months after Douglas [W.] went on national television and before Congress to praise an unproven drug for obliterating his brain tumor, he got a shock: The cancer was back.
[Douglas’s] trauma illustrates the contention swirling over “antineoplastons. ” Are they the wonder drugs that desperate patients insist? Or are patients the victims of a fraud charged in a federal indictment of the drugs’ creator, Dr. Stanislaw Burzynski? “There is a long history of promises of miraculous treatments, and they unfortunately generally don’t pan out,” said Dr. Richard Klausner, director of the National Cancer Institute.
[…]
[Douglas] even stands by Burzynski, abandoning antineoplastons only when his brain tumor tripled in size. “We believe that treatment did work with Doug for a year,” said his wife, Lola [W], of Estacada, Ore.
It is sad, but entirely to be expected, to see that Douglas supported Burzynski after a clear failure. They believe the treatment works, but from the outside it is impossible to distinguish between a tumor growing steadily but slowly for a year and a tumor growing like crazy only in the last weeks. This is why we need trials. This is why patient testimonials are veridically worthless.
And we’re not the only ones who question the value of Burzynski’s treatment. Dr. Warnock, the radiologist who said that it looked like he would consider sending a family member to the Clinic after he saw Douglas’s scans, has had a come-to-Jesus moment:
The biggest question is how patients fare over the long term.
Take [Douglas], whose brain scans showed in January that his tumor was gone. In April, it was back. Triple antineoplaston doses failed.
[Douglas’s] doctor cannot explain the initial disappearance. But the relapse and a second patient who had “a flagrant progression of the tumor in 60 days” make him “extremely skeptical,” said Dr. Gerald Warnock.
We suspect Warnock has learned to not speculate wildly in public and that’s why he doesn’t explain the initial disappearance. Doctors and other medical professionals who work with Burzynski’s patients have reported being stung when they see what giving him the benefit of the doubt leads to. Take Dr. Bennett, who treated a girl in New Hampshire earlier this year:
Bennett’s decision [to treat the girl] was based, in part, on a newspaper article that said Burzynski had agreed to donate the medicine required for [ML’s] treatment. But what Bennett didn’t know is that Burzynki planned to charge the family for the clinical costs associated with the therapy.
[ML’s grandfather] said the first month’s bill is expected to be $28,000. Every month after that is expected to cost $16,000. The treatment usually lasts eight to 12 months.
Bennett says a representative of the Burzynski Clinic called him on that date seeking payment for the first month of [ML’s] therapy. Prior to that, Bennett, who is donating his services, thought Burzynski was doing the same.
Instead, said Bennett, “I’m supposed to be the bag man for all of this. They want me to collect the 30 grand for the family and send it to Burzynski.”
Elsewhere, Bennett said that the arrangement “meets all the criteria for a bait and switch operation.” And still elsewhere, he said:
“This is a classic bait-and-switch operation,” Bennett said of Burzynski in a recent phone interview. “He suckered me and this family into buying into a very expensive treatment plan.”
[…]
Bennett has become dismissive of Burzynski’s alleged treatment.
“His claims have no merit. He has never tested any of it realistically,” said Bennett.
And the IV-certified nurse who visited the Burzynski Clinic was apparently not impressed either:
Bennett noted as an example training for Ariel Dye, a registered nurse from Derry who oversaw the intravenous injections of [ML], which cost many thousands of dollars but provided nothing of value. Neither Bennett nor Dye were paid for their help.
“I went out there and watched the nurse teach a layperson how to work off a central line. It was nothing,” said Dye, who is an IV-certified RN. “It was crazy to me that they charged this.”
“I got little to no instruction saying (things like) if there are major reactions, this is what you’re going to do in this case, in that case,” she said. “They made it seem like it was this big training program they put me through, but they lied and were looking to make money.”
Nonetheless, in the same article, and despite the fact that ML reportedly had a bad reaction to the drugs, her grandfather still supports Burzynski:
But [ML’s grandfather] thinks Burzynski has shown at least anecdotally that his treatment has more promise than anything developed by mainstream medicine.
“If he had more funding, he could come up with answers, but nobody wants to do trials with him,” said [ML’s grandfather], who blames Burzynksi’s patent for the opposition. “Because one individual has controlling interest over this, they can’t make any money from this man.”
[ML’s grandfather] also thinks that if the FDA had allowed [her] to be treated at Burzynski’s clinic in Texas, rather than requiring it to be done in New Hampshire under the oversight of a local doctor, she might have done better.
“I don’t believe any of that nay-saying stuff. I’m not going into this blindly,” said [ML’s grandfather], talking about the months of reading and work and meetings he has held on the topic. If somebody else he knew was diagnosed with DIPG, he’d recommend going to Burzynski.
Even though knowledgeable professionals who have nothing to gain from seeing Burzynski shot down and who clearly want to help cancer patients in any way they can, once they have actually worked with Burzynski very commonly come out entirely disillusioned, the targets of Burzynski’s scheme, the fundraisers and family’s and patients, often cling harder to the Clinic, because the alternative is perhaps too horrible for the healthy mind to contemplate.
According to Douglas W.’s obituary in the Sept 8, 1996 Oregonian, Douglas died on the 6th of September, mere months after he appeared before Congress as an apparent cure to testify for Burzynski. He was 48.
For the stories of other patients who have testified for Burzynski but subsequently died, see the cases of Elke B. and Janet C.
Burzynski Patient Sophie M.’s Story
Sophie M. was 5-years old. Her parents took her to the doctor when her eye started blinking uncontrollably. Then she became unsteady and harder to understand. On August 23, following an MRI, the doctors at the Children’s Hospital of Orange County told her family that she had an inoperable brain stem tumor and said that she had months to live. (Sophie’s story was captured in the Orange County Register on 21 September 2000.)
Almost immediately, [the M. family] and members of the community began racing against time to raise money for a costly experimental treatment.
Before the [M family] left for Houston, where Dr. Stanislaw Burzynski administers the almost $15,000 per month gene therapy he says has saved hundreds of lives, 28 aunts and uncles gathered at the home of [Sophie’s father’s] brother-in-law to brainstorm fundraisers.
This was not Sophie’s large family’s first encounter with Burzynski. As reported in the 21 September 2000 Orange County Register:
“[Sophie’s father] says he is angry that insurance won’t pay for what he regards as his daughter’s last, best hope. After all, cousin Roman [M.] of Garden Grove, who first told [Sophie’s dad] about Burzynski, said the treatment reduced his 2-year-old daughter’s brain tumor by 85 percent.”
The daughter, Tori M., frequently asserts that she was cured of a brain stem glioma as an infant. Her family is among the most vocal of Burzynski’s supporters, however, there is reason to doubt her family’s conclusions.
If Burzynski says he has saved hundreds of lives, they do not appear on the Burzynski Patient Group, which has fewer patients on it than this website and has had 33 more years to gather names. His therapy is as much gene therapy as is drinking an Orange Whip.
As is so often the case, the entire family mobilized to pay the Burzynski bill, and this apparently large family had wide and deep connections in the community, as the list of contributors who immediately jumped on board to raise money for Burzynski’s worthless treatment illustrates: the family’s parish, the Chamber of Commerce, the local Family Support Center, and so on. The director of the FSC hit the nail on the head when she discussed what was going on:
Center Director Ann Nguyen said she understood the difficult choice the family faced when they decided to pursue an expensive, unproven treatment they could not yet afford. “It’s hard to be in the center of this and say what is right and what is wrong,” she said.
Agreed. One of the tragedies of the whole sordid career of Stanislaw Burzynski is that in times of desperation, it becomes more difficult to discern what is the appropriate course of action. However, with time and distance, as is clearly evidenced on this site in spades, patterns emerge that call for harsh judgement on the whole Burzynski enterprise.
By the time the story hits the local paper, the family is already in Houston for the 3-week training course that all ANP patients undergo:
Still, the family faces an enormous financial hurdle. For this first round of treatment, they owe Burzynski $12,000.
It is, of course, not covered by insurance. Nonetheless, the coverage in the local paper yielded a flood of money from the community, as reported a week later:
The parents of Sophie [M.] say response has been overwhelming to a Register story last week on their attempt to pay for an experimental treatment for their daughter’s brainstem tumor. Checks totaling $15,000 have been sent from all parts of Orange County.
Quack cancer cures don’t just victimize families, but entire communities. They also keep patients out of legitimate clinical trials, unnecessarily and unthinkably delaying the development of effective treatments.
In November there is more fundraising by the Chamber of Commerce. On March 1 we get an update in the Orange Country Register. The same author reports on a day at a local elementary school where they children are planting a tree for Sophie.
On Saturday students, teachers, parents, city officials and family members gathered to plant a star pine tree in honor of Sophie [M], a Stanton 5-year old currently undergoing experimental treatment for an inoperable brain tumor.
Though she has already outlived physicians’ expectations, Sophie is still very sick, and wasn’t able to watch as the tall tree with fluffy needles was lowered into the ground by four volunteers from Shade Tree Plantings, an Irvine based foundation that plants trees for charity.
[…]
Students at Carver said they learned about Sophie in their classes, and knew the significance of Saturday’s planting.
“We’re doing this so the family has money,” said fourth grader Shyla [W], gesturing toward the bake sale she was helping run.
The statement that Sophie has “outlived physicians’ expectations” is inaccurate and gives Burzynski’s treatment more credit than it deserves. In the first article, the reporter said that:
At best, she had 10 months to live.
Two weeks later, when Sophie’s death is announced and the enduring impact of Sophie’s struggle was documented, we are told:
Before she passed away Wednesday after a seven-month battle with an inoperable brain tumor, she united the city of Stanton by spurring an outpouring of support and hope. (emphasis added)
Sadly, this type of upbeat inflation of cancer patients’ prognosis and progress is typical in the media. And it’s hard to announce or even accept that someone is dying. See the spectacularly inaccurate case of Amelia S., for instance, where what appeared in the press and what was actually happening differed greatly.
Poor Sophie M. passed away on 14 March 2001, well within the time of her initial prognosis.
As of this writing, Burzynski and a number of his staff members are up in front of the Texas Medical Board on a fairly impressive array of charges. Let’s hope that the TMB can end this ongoing, endless abomination.
Burzynski Patient James W.’s Story
Dec. 18 2003, was 5-year old James W. of Lake Arrowhead, CA’s third day of headaches and vomiting. His story was captured by the Mountain News & Crestline Courier-News. His parents took James to the doctor, but he sent them to the hospital for a CAT scan. By the end of the month, he would have two surgeries for a Grade 2 astrocytoma. It’s a bad diagnosis.
James underwent normal therapy, chemo and surgery, for this tumor. By September 2004, the family had run out of options. They decided to head to Stanislaw Burzynski’s clinic in Houston. Their decisions and treatment were recorded in great detail in an online journal. On Sept 27, James’s mom writes:
okay, big news: we are leaving for houston, texas early tomorrow morning. we will be going to the Burzynski Treatment Center for cancer. he’s controversial, not all in the medical community like him, but we’ve heard very good reports from patients.
This is not entirely accurate. I have yet to encounter a physician who would knowingly send a patient to that clinic. It is telling that Burzynski’s patients are mentioned here, as they have often been the principle recruiters for Burzynski. They fanatically support him. This is to be feared.
James and his family flies down to Texas on seats that were purchased by a friend. On the 28th, they are there. A family member updates the blog:
[James’s mom] just called to say that they went into the clinic to drop off James’s medical records.
She described the scene like this:“As you walk into a large reception area you see several secretaries at a desk. Above them is a large crucifix, and behind that is a large picture of (Dr.Burzynski)the doctor who founded the clinic with the Pope!”
There is also a picture in the reception area of the Pope at his recent visit to Lourdes. You may remember that the Pope was given James’s name to pray for at Lourdes.
As you know, [James’s parents] are devout Catholics. This “Catholic connection” uplifted her spirit.
Burzynski’s connection to the Pope is tenuous at best, but he milks it for all it’s worth. Earlier this year, when John Paul was beatified, Burzynski ended up on local news talking about, well, himself:
The piece, which seems to have been written by someone completely credulous (I would not be the least bit surprised if it was fed to the station by Burzynski’s own people), suggests that maybe, just maybe, he went to treat the Pope. This is, of course, a load of horse feathers. A photo proves nothing. Heck, my mom has a picture with John Paul II. She also cured him of imaginary cancer.
On Sept 29, we hear:
Today [Jim’s parents] met with two doctors from the Burzynski Treatment Center in Huston, TX.
After a full explanation of the treatment and a complete physical of James, they have decided to go ahead with it. No miracle cure is promised, and as she posted before, this is non-standard treatment. [James’s Dad] is looking into their Blue Cross Insurance to see if any part of this treatment is covered.
James will be treated with antineoplastons, a treatment only available at the Burzynski Treatment Center.
The routine is similar to chemo, James is infused and then progress is measured with scans.
[James’s family] plans to be in Huston for three weeks.
Of course it won’t be covered. It almost never is.
We see that the family is doing what so many other patients do, learning to administer the treatments themselves when they return to California:
James has a portable pump and [his mom] is being trained to administer all medications. Specifically flushing the porta-cath and handling IV equipment. She has emergency contact numbers and is becoming even more knowledgeable about medical treatment.
After three weeks she will be fully trained to take care of all medical needs. She takes James to the clinic every day and tests are done to monitor his condition.
On the 4th, more detail is given:
James feels really good. This is NOT chemotherapy. He is NOT in the hospital. We take him to the Burzynski Research Institute each day. We are there for about 3-4 hours getting trained on how to give James his treatments. He started this treatment on Thurs, Sept 30. A pump is constantly hooked up to his porta-cath and he receives the treatments every 4 hours. Each treatment lasts about a half hour. The treatment he gets is called antineoplastons. Really there are 2 different meds involved- one is to stop the part of the tumor that makes it grow, and the other is to kill the tumor. The side effects of these meds are minimal (especially compared to chemo!!). It creates an electrolyte imbalance, in that the sodium goes up and the potassium goes down. So, we have to have him on a very low sodium diet, and a high potassium diet (James is loving bananas!!) Also, to keep his sodium in check he has to drink ALOT of water. (I don’t have to mention that Burzynski’s patients have to pee ALOT!) Yesterday we got him to drink over 2 liters, and it made his sodium level go down today- so it worked like we wanted! If his sodium is even 1 point higher than 147 (the top end of “normal”), the FDA says that the patient cannot receive the treatment until it comes down. We REALLY don’t want him to have to miss treatments, so are on “sodium alert.”
To be clear, antineoplastons are chemotherapy by any measure. The list of side effects is gargantuan:
Hypernatremia, elevated sodium, is the most frequently reported side effect on this website, I think. And the prodigious amount of fluid that patients end up drinking because of the insatiable thirst decreases their quality of life. They are up running to the bathroom constantly and sleep deprived. Sometimes the sodium levels can get out of control. For instance, take the case of Luna P., who was rushed to the hospital with a sodium level of 178. This is how her doctor reacted to that news:
Make no mistake. Antineoplastons are dangerous on a good day. Further, leaving the patients to fend for themselves may have contributed to the over 100 overdoses that the FDA reported had taken place (only in the files they happened to review, mind you) with no evidence that any corrective action was taken on the part of Burzynski. These lapses are not in dispute. Josia C. died with a sodium level that is basically unseen outside of Burzynski’s trials. Nobody told Josia’s parents that, though.
On Oct 7, we hear that James is having very bad headaches, for which he is giving decadron, a steroid, to reduce swelling:
These doses are given i.v. by [James’s mom]. Part of the training that she is getting at the clinic includes giving this “emergency dose” when/if James gets headaches, so we are assuming that this is just part of what happens under this treatment. Who knows, maybe the pain is from tumor breakdown??!! The doc did say that if they continue, they could decide to send him to the hospital, which has special rooms set up just for Burzynski’s patients.
[His mom] will talk with the doctor tomorrow about the headaches. For tonight, the doctor said to hold the antineoplastons until tomorrow when they can look into the headaches.
What’s disturbing here is the suggestion that the pain is from “tumor breakdown.” This is a trope that is as loud as any in the stories of Burzynski patients and, by god, someone ought to investigate it. Here’s how it is put the next day, right before James’s pulse drops and he goes to Texas Children’s:
We figure that with everything that is going on, especially the headaches, something is going on in his head. Who knows, it could be tumor breakdown, which is accompanied by swelling, which causes headaches, which requires steroids to reduce swelling- so much for my extensive medical training!
This is something that many patients have reported. Take Rory Z’s parents, who reported:
I am now an old pro at giving the Decadron…it’s amazing how things can change in 24 hours. I gave Rory his dose this evening…he started to eat dinner and w/in about 30 minutes he threw up again. Darn. Perhaps we have to wait longer until he eats? I talked to [Nurse] Marlene tonight before the Group Meeting…and she said vomiting isn’t that uncommon at first…they may increase the Decadron tomorrow. She explained that as the Antineoplastons turn off the cancer cells..they die…and the white blood cells rush to the area to clear out the dead cells. This causes swelling…which can cause the vomiting She said, unpleasant as it can be..it’s actually a good thing.
Or you could look at Levi G’s story, another child with a brain tumor, whose parents reported:
The next day we talked to the doctors at the clinic in Houston and found some answers. According to them the tumor was breaking down. When it breaks down it causes swelling which causes pressure. We had to up the decadron (steroids) a little to keep the swelling down so that he could tolerate a higher dose of the treatment. They told us before this that he would get worse before he got better. But at this rate I wonder if he’ll ever get to the “better” part.
And this “getting worse is getting better” narrative is EVERYWHERE in the Burzynski patient stories. It’s a nightmare that we have found it as often as we have.
As James’s grandparent is writing this post, we hear:
[James’s Mom] just called me to say that the nurse said to call 911 and have them take him to Texas Children’s Hospital because he still has the headaches, his pulse is pretty low (about 60, it is usually 90-100) and he’s pretty sleepy (eventhough it is nighttime). Mare said that it may be a blockage of the shunt, thereby creating head pressure. We have seen in the past that when he gets head pressure, his pulse goes down, he gets sleepy and he has headaches. Anyway, I’m sure they do a c.t. scan.
The next day we hear how the visit to the ER went:
They went to the hospital, got a c.t. scan (which showed no enlargement of the ventricles, i.e. the shunts are working fine), got a dose of mannatol (which is supposed to reduce swelling- mare said she didn’t think it did much), and got an increased dose of decadron (steroid). The decadron seemed to help, in fact Mare said that now he is sitting up, drawing pictures, writing his name, talking, and drinking. Mare was in contact with Burzynski’s doctors the whole time, and she told the Texas Children’s Hospital doctors the whole story. They said, “wow, you guys have been through a lot.”
That’s not all that Texas Children’s Hospital doctors have to say about Burzynski’s patients. According to Jeanine Graf, director of the pediatric intensive care unit at Texas Children’s said, “I’ve never seen one survive long-term.” According to an interview with Dr, Graf that appeared last year in USA Today:
After caring for some of the Burzynski patients, Graf said she wouldn’t recommend his clinic to anyone. Although Burzynski’s patients can’t always be cured, she says, they do have choices.
“The most valuable commodity that a person with a terminal illness has is time,” Graf says. “You want to make sure that when you’re investing time in any therapy, that you are going to get a return on your very valuable last investment.”
Even Burzynski’s supporters, like Luna P’s mother, reported that Texas Children’s Hospital staff were always “cleaning up Burzynski’s messes.” As reported to the BBC investigative show, Panorama (reviewed by Orac at Respectful Insolence):
Luna was brought to the Texas Children’s Hospital during her time in Houston, and the staff there recognized right away that she was a Burzynski patient because they had seen so many similar patients suffering the same complications before. It was also clear how much contempt the staff there had for the Burzynski Clinic. If there’s one thing Panorama did right in this report, it’s showing how seeing so many already dying children show up in our ICU because of hypernatremia due to antineoplaston therapy will do that. Perhaps the most devastating part of this segment was seeing Dr. Graf stating, point blank, that she’s never seen a Burzynski patient survive. [emphasis added]
The next day, James is admitted formally into the ICU at Children’s, according to his mom:
James was admitted and is in ICU. The doc from Burzunski’s clinic said we are at a very critical stage. the tumor has swelled up and is bleeding. he had an mri yesterday which showed that it doesn’t seem to be bleeding anymore than it was the night before with the cat scan. we are very touch and go right now. every hour is critical. james may pull through this if his body can stop the bleeding itself, or he may not. he is on the highest dose of decadron that adults get. he does not have any more headaches except occasionally and they go away. we now understand how necrosis can cause problems just like the tumor.
I wonder about the necrosis statement. In fact on the 15th, James’s mom describes this whole episode leading to James’s admission into the hospital as an “intratumoral bleed.” His mom reports that the doctor (whose affiliation is not mentioned, so we don’t know if it is one of Burzynski’s people or someone from TCH) said:
the doc said that the bleed could have possibly helped if it was destroyed then part of the tumor could be dying since it no longer has that blood supply. i’m hoping the low grade fever is a sign of white blood cells cleaning up dead tumor
So a bleed inside the tumor with possible necrosis. We have seen innumerable patients who talk about necrosis in the center of tumors as if they were a positive development instead of the more likely scenario, that the tumor has outgrown its blood supply.
- We first noticed this pattern in the story of Amelia S.
- The family of Haley S heard this (also, see the clinic’s heartless reaction to a stroke that the child had).
- The Clinic gave the same prognosis to Justin B’s family in 2006.
- We see a similar cyst in Leslie S.’s story (2006), and it nabbed Burzynski an extra $7,500 before she died.
- We see it AGAIN–as far back as 1994!–in Cody G.’s story.
- We saw it again in the case of Samantha T.
- We saw it again in the story of Christy M.
- A similar story came from Georgia State Senator Ed G.’s story.
- Burzynski himself tells the family of Chase S. the same thing. Poor Chase ended lying in state in his family’s front room for months.
On the 15th, James is still touch and go, it seems. His breathing is labored (possibly because of the steroids) and he seems to not be able to get much rest because if it. On the 22nd, James’s grandpa writes that the boy is too sick to travel home from Houston, as was planned. And on the 23rd:
James was admitted earlier today to a nearby hospital and later transferred to Texas Children’s Hospital. His symptoms are headache, vomiting, non-responsiveness, and incoherence. He had at least one seizure.
[James’s mom] called and said that the doctors do not think his present condition is related to the tumor but rather to a low sodium level. They are adjusting his medication to try to keep his sodium level where it should be. You may recall that the medicine from the clinic causes highsodium levels cured only with large intakes of water.
Over the next two days doctors bring James’s sodium up in the ICU.
On Oct 31, after a clot in the chest port and low white cell count, the family returns to California. On Nov 3, however, it’s off to the hospital in an ambulance again, as James’s sodium is off and he’s having symptoms similar to the ones in Houston. The staff at the hospital, Loma Linda, is very accommodating and takes over the administration of the antineoplastons. They are hoping this move will “minimize trips to the hospital.” Further they put in a g-tube:
that will allow fluids directly into his GI tract will be done. It may be tomorrow. That’s what all the testing was about. If they can successfully do this, it will allow large amounts of fluids directly into his digestive system to counter high sodium levels, a side effect of the antineoplastons (from Huston clinic).
As his grandfather puts it on the 8th:
The medicine he takes to defeat the tumor (6 doses a day) contains 12 GRAMS of sodium as well as other chemicals. The only cure for high sodium is ingesting extremely large quantities of water. It is difficult to get a six year old to force himself to drink so much water.
The costs are mounting and the family opens a fund for James on the 17th. On the 19th they are at home again, and we quote James’s mom at some length:
we are trying to get settled in, setting up all our pumps and equipment. the home health nurse who came to help last night said that we are basically running an ICU unit. she said it’s the same level of care and responsibility and we believe it! we practically have a whole pharmacy on our dining room table.
last night was ok until 2 am when james’ steroids kicked in and he stayed up until morning asking for food. so,
we opened up the kitchen and got to work!
so much has happened since texas, i’ll never have time to tell it all. on the outside, james seems worse than before. all the hard work he did over the past year, re-learning to walk and use his right arm, disappeared overnight when he had the intratumoral bleed. he is now weaker than ever on the right side. his left side is also weak simply from being in a hospital bed so much. his left eye is also weak, but seems to be getting stronger. however, we’ve noticed subtle improvements in his personality, interest in the outside world, and vocabulary. these improvements come and go. with this kind of treatment, you have to “get worse” before you get better.
It’s hard to write this and not seem like you are attacking the family, but it is crucial to illustrate how someone can rationalize staying on a treatment that is not working. First, you see basically contradictory assertions: James’s condition is deteriorating and he is getting better, but even those less objective improvements are flickering. The merciless trap that so many patients of the Burzynski Clinic fall into is summarized in the last line: You have to get worse before you get better.
James is getting worse. He does not get better.
His sodium is up again on the 20th and he’s off treatment. Then he crashes hard after going for a walk with his family. His heart rate is down. They think this might be because his sodium is too low and so they feed him. After getting 2 feet of snow on the morning of Nov 22nd, the fire department comes to the house twice to collect James’s daily blood sample and then to take him to the hospital when his platelets are at 36,000, what the family calls “a major medical emergency” (usually they would transfuse a patient at 70,000). He is at risk of bleeding out. At this time James’s father reveals how much this decline is costing in an appeal for help, as the insurance company (of course) is not going to pay for Burzynski’s treatment:
Now, I am humbly asking for donations to help us pay for this treatment. Each month, it costs $7,600 for James to be in the clinical study at the Burzynski Clinic. If the cancer is responding to the medication, James could be on the treatment for up to a year and a half- or even longer! We pray that this will be the case (of course, we continue to pray for the instant, miraculous healing of James as well!). We will find out if the tumor is responding by the MRI’s that he will get every 2 months. So, this is very costly, and we need to once again ask all of you, our wonderful support network, to help us.
The family moves in to Ronald McDonald House facilities because:
the docs at loma linda really want us to stay nearby. we agree.
By this point, James has already had about a dozen transfusions. On the 28th his sodium tanks. His father writes:
Loma Linda Hospital has been EXTREMELY cooperative in letting us do these trial meds with their help. It is cool because I can see that they are really interested and they want to know all the details of James’ history and of what this treatment is all about. Hopefully in the future, many more kids will be able to benefit from the medication from the Burzynski Clinic.
We have not seen James benefit from them. He has been living in a hospital a huge percentage of the time since he went to Houston. And the family asks for money again the next day. They are able to bring him to Ronald McDonald House with them. He seems to not be producing platelets, white cells or red cells.
On the 9th of December, the long awaited MRI takes place, though the fluid on James’s lungs makes them decide to not sedate him for the 2.5 hour procedure, and he gets through like a champ. Says his mom:
the doc from burzynski’s clinic said that we are going to hold off on the antineoplastons for a “few days” to see if his blood counts start to go back up. it’s not supposed to suppress bone marrow, but with james nothing ever seems to happen the way it’s “supposed to.”
tomorrow he will go back over to the hospital for 2 transfusions: packed red cells and platelets.
we are glad this day is over, i was worried about him being sedated with that cough. i’m trying not to obsess about the scan, but it’s very difficult.
On the tenth, no word on the scan:
we still don’t know too much about the scan results…the main problem is that they wanted to compare it to the one we had during the tumor bleed in texas, but nobody could find that scan!
Hm. A CD of the scan has been sent to Houston. In the meantime, they are trying to determine if James has pneumonia. The steroids he’s been on have suppressed his immune system and he might not be showing the typical symptoms, like fever.
Finally on the 14th, the results from Loma Linda:
“Except for a .5 cm (1/4 inch)growth into the hypothalamus, the tumor has not changed since the Texas/bleed MRI. The bleed is smaller and there is less edema(swelling.)” !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
This is what Dr. Fae relayed to me over the phone today. We are very happy because from August 9th to Sept 21st, while on chemo, it grew over 100%.Basically, it seems as though the antineoplastons have put the brakes on this tumor even though we were never at our maximum dose and we had many interruptions in treatment.
we have not heard from Bursynki’s docs yet. as soon as we do, we will let y’all know!
This means it’s growing. A tumor growing explosively like it was before they went to Houston levels off as a matter of course. The size of the tumors follows something called a Gompertzian growth curve, which looks something like this curve (for another cancer):
So, it’s probably a bad idea to lean too hard on a second data point and conclude that the tumor’s progression has been altered by the antineoplaston treatment. And let’s say that the tumor has actually stopped progressing–how do we know that it is the ANP that is doing it, not any of the dozens and dozens of other treatments and procedures that James is undergoing? No, at best one must conclude it is too early to say.
On the 18th, the 1-year anniversary of James’s first symptoms:
Although the doctors at Loma Linda said that the last mri showed no change except for the quarter inch growth toward the hypothalimus, the doctors in Houston say that there has been “about a 15% increase in enhancement.” (enhancement means blood flow and activity) They said what this means is that the lower grade aspects of the tumor are being stopped, while the higher grade aspects seem to be “enhancing.” […]
Anyway, we are deciding to not dwell on the “enhancement” issue. All we can do is to continue to take care of him on a hourly basis (minute by minute really). Worry really doesn’t help. So much is involved in taking care of him that there really isn’t time to go down that road, although we find ourselves in very distinct moods, depending on how he’s doing. We get all excited when he is just able to open both eyes (which he practiced today, but was very difficult).
This does not seem to be a boy getting better.
On the 21st, the mom notices that James hadn’t had a sneeze or yawning reflex for a while (those reflexes originate in the brain stem), and how he has them. Granting that this is true (and not, say, confirmation bias), James is able to squeeze his dad’s hand on command and they even took him home for a bit. He feels good on this day, and the way she describes it is telling:
i even checked the pump that infuses the medicine into him, because i started thinking it wasn’t working right…he was feeling so good.
Antineoplastons can degrade the quality of life for the terminally ill.
He is still receiving infusions, and his sodium is too high for them to keep infusing him. On the 26th, after James was unable to stay awake for opening Christmas presents. We now see that his steroid doses have been enormous:
[The doctor in California, James’s mother] and I agree that this is most likely due to the weaning process with the steroids. We had gotten down to 2mg, 1mg, 1mg over 24 hours. Back a month or so, he was on 8mg, 8mg, 8mg, 8mg over 24 hours, so he was getting 32mg/day!! (an extremely large dose even for a huge adult!!) Anyway, we all decided to get him back up to 2,2,2 and see what happens.
On the 29th, James is still lethargic and he has had a poor appetite, and they think that the tumor is bleeding again. He is getting 4 liters of water a day through his tube. This may be leading to low sodium the next day, when they take him back to the hospital, where they find:
he was still very lethargic, could hardly hold his head up, and his right pupil was fixed and dilated, not responding at all to the flashlight.
The pump, it turns out, was broken, not pumping the high sodium ANP into James, and while he was still getting what are typically dangerous doses of water. The Burzynski Clinic sends a new pump. On the 30th, mom’s description suggests James is very poorly:
after this morning of eating popcorn and perking up a bit, he went to sleep and has been asleep, or just laying there with his eyes closed. he is not talking or even answering our questions. i know he hears and understands us because he will squeeze my hand when i tell him too, but he just won’t talk or open his eyes…although sometimes i catch him with one eye open a tiny slit but then he closes it when i see him. the nurse from houston said he may be sleepy for a couple of days because of the pump malfunction, etc.
On New Year’s Eve, the only update is:
james has a very large bleed happening now. doctors are very concerned. urgent prayer and fasting needed
The next day he manages some extremity-wiggling on command and swallow a few bites of food. The doctors are trying to “dry James out,” as his parents put it, and his heart rate picks up, but he’s not usually there.
Sadly, the poor kid seems to be really slipping away (some of the reactions seem like he’s in a vegetative state). To get a sense of where he is, on the 6th we receive a report:
Today, Mare and I got some good (and much needed) encouragement! We sat James up like we did the yesterday and the day before with the physical therapist. James was able to hold his head up for about 35 seconds several times! While he was doing this, his right eye was slightly open and he seemed much more alert than he has in the previous 5 days. Of course, we made a huge deal and told him how proud we are of him that he is working so hard. Also, at one point, I asked him to hit a ball that Mare held in front of him. He didn’t do it, so I did it hand over hand with him. Then I asked him is he could hit the ball, and he actually shook his head “no.” That was very encouraging because he really responded to me, which he hasn’t done much lately.
That seems an ambiguous response at best. On the 7th, acidosis is setting in, a condition that can be fatal very rapidly, but it reverses and he levels out. On the thirteenth, the father reports that James says, “What?!” in response to a question. The staff is manually moving food out of his stomach using a syringe in the g-tube.
On the 25th, James is still “asleep.” It’s clearly not sleep at this point. By the 31st, the doctors say that James has pneumonia. On February 3, James’s dad reports:
James’ breathing is extremely labored. He is now on a special type of mask that has a very large amount of humidified oxygen going. He is breathing through his mouth, his nose is inflamed, clogged (with blood), congested. We have been cleaning it out with saline and some non-invasive suction. Still he is breathing through his mouth and having a very difficult time.
They have been staying at a Ronald McDonald House by the hospital since November, and on the 4th, the manager tells them that they need to move out by the 11th. On Feb 9, however, someone at his bedside reports that James is acidotic, his breathing is failing. He dies an hour and a half later. He was 6 years old. Burzynski’s treatment seems to have done nothing but make the boy miserable while he was conscious.
It’s a disheartening story. We have a thousand names, a thousand stories. We are working on them, one by one.*
Burzynski Patient Holly G.’s Story
Holly G. was an 11-year old girl with brain cancer (astrocytoma) when she left her home state of New Mexico in February of 2001 to go to the Burzynski Research Institute with her family for treatment. Burzynski’s antineoplastons would cost the family $20,000 up front and $9,800 every month thereafter. On the 1st of March, the paper back home, the Sangre De Christo Chronicle, gave an update about her progress and interviewed her father, who said that she was in a wheelchair with cerebral edema:
“‘With this type of tumor, sometimes that’s what happens. I see it as a temporary thing.’
Holly had an MRI […] Monday night and Ed said they would learn its results Tuesday.
[Holly’s dad] said the swelling may be caused by the tumor’s reaction to the treatment. ‘The swelling could be from tumor cell death. I’m waiting for an interpretation of the MRI. I’m waiting for the experts to tell me what they’re seeing. I think the treatment is working, that the tumor has reduced.'”
The paper also notes that “Holly is taking a diuretic and steroids ‘to reduce cranial inflammation.'”
This first report about Holly’s treatment is extremely telling. First off, they are speculating about the tumor already shrinking. Of course the father is clinging to that interpretation; how else does someone facing something so horrible keep it together? He is explaining in exactly the same terms that other Burzynski patients have reported excitedly. Take, for example, the report from the parents of Rory Z. (deceased):
“I am now an old pro at giving the Decadron…it’s amazing how things can change in 24 hours. I gave Rory his dose this evening…he started to eat dinner and w/in about 30 minutes he threw up again. Darn. Perhaps we have to wait longer until he eats? I talked to Marlene tonight before the Group Meeting…and she said vomiting isn’t that uncommon at first…they may increase the Decadron tomorrow. She explained that as the Antineoplastons turn off the cancer cells..they die…and the white blood cells rush to the area to clear out the dead cells. This causes swelling…which can cause the vomiting She said, unpleasant as it can be..it’s actually a good thing.”
Notice that Rory was on steroids (decadron), like Holly.
Another child’s father, Supatra A.’s (deceased) reported:
“We were told last Wednesday that as the antineoplastons work to kill the tumour cells it is normal for the brain tissue to swell with all the dead cells in there. This swelling is what creates the pressure and results in headaches and vomiting. If it occurs then we will start Supatra off on a low 0.5ml dose of Decadron steroid and increase as necessary.”
Again, decadron. Steroids suppress the immune system, including the inflammation response to tumor growth. In the brain stem, reducing that swelling (but not the tumor) might well lead to a slight perceived improvement in the symptoms like balance, breathing, and swallowing, which are rooted in the brain stem. This is exactly what happens to Holly and does not indicate that the tumor is shrinking.
Holly’s father, on the same page, reports that a 40% success rate has been given to him by the Clinic:
“Their big success rate is with these fast-growing cancers.”
This statement is not backed up by any clinical results. Burzynski has been known in the past to revise the definition of success in his favor. For instance, when the FDA inspected him last year they found that 60% of his outcomes were inflated, essentially all of his “positive” results in the sample.
The family’s hardships are heard by the state of New Mexico, and the legislature actually moves to pour money down Burzynski’s toilet, introducing bills that would put half a million dollars in emergency appropriations aside and would require “FDA-approved experimental treatments or procedures be covered by insurance.”
When Holly comes home in the March 29 edition, we see exactly the improvements we’d expect to see from high doses of steroids and we learn that the swelling was a side effect of the treatment (it does not sound like a sign of improvement):
“The treatments caused a few side effects — including cerebral edema, swelling in her brain which put her in a wheelchair, and made swallowing difficult and even led to a temporary respiratory arrest. ‘By no means is this treatment benign,’ said Holly’s father […]. She’s doing better than she was doing 2 or 3 weeks ago. Neurologically, certain functions are starting to return. She’s got some movement back in her arms and legs and she seems to be a little bit stronger. She can talk now, which is a big plus. The pressure seems to have been reduced. We’re still giving her medication ’round the clock.’
“Besides her antineoplaston treatments [Holly’s dad said] Holly is receiving other medications to help reduce the swelling on her brain and for other needs.” [emphasis added]
So she is still on steroids, and we see mild relief. For Burzynski, however, that’s not an encouraging sign. For instance, during last year’s inspection, the FDA noted, “Burzynski had patients on steroid doses that were five to 64 times higher than the levels that doctors would expect patients to need.” This is a perverse finding. Nonetheless, it looks like antineoplastons nearly killed her, at least according to Holly’s father, a true believer.
In the same article, we get a rather equivocal report about her tumor:
“[Holly’s dad said her] last MRI showed 30 percent of the tumor may have died — ‘We’re not really sure.’ Holly will receive a second MRI in a week or two which, [her dad] hopes, ‘will be able to tell us more.'”
The line that “30% of the tumor may have died,” instantly raises red flags, and we only draw attention to it because we have read hundreds of abominable patient stories. They don’t say that it has shrunk. Burzynski’s patients are notorious for reporting that their tumors are dying on the inside and being excited about it. By far the most likely scenario is that it represents a tumor that has outgrown its blood supply. It’s a sign of progression, not improvement.
- We first noticed this pattern in the story of Amelia S.
- The family of Haley S heard this (also, see the clinic’s heartless reaction to a stroke that the child had).
- The Clinic gave the same prognosis to Justin B’s family in 2006.
- We see a similar cyst in Leslie S.’s story (2006), and it nabbed Burzynski an extra $7,500 before she died.
- We see it AGAIN–as far back as 1994!–in Cody G.’s story
- We saw it again in the case of Samantha T
- We saw it again in the story of Christy M
- A similar story came from Georgia State Senator Ed G.’s story
- In the most grotesque horror show we’ve ever written about, Burzynski himself tells the family of Chase S. the same thing
By this point, “Holly’s Bill” has passed the state legislature and is on its way to be signed by the governor.
On May 3, Holly is on life support. The paper reports that the tumor had previously shrunk, but that seems to be contradicted by the fact that a month later she is lying unresponsive in a hospital. Why do so many of Burzynski’s “improving” patients end up dead a few weeks later (hours later in the case of Andrea W.)? At any rate, what happens rate is infuriating:
“Although he pressed for the continuation of her Burzynski treatments, [Holly’s father] said the doctor refused, even told him, ‘This is just the natural progression of her disease.’ And he was pressured to take his daughter off life support.
“‘Now she’s fighting for her life because these guys wouldn’t do anything.’
“By Saturday, the hospital agreed to try the treatments and [Holly’s father] said, ‘Some of her neurological function has returned.’
“Now [her parents] are dealing with worry. They’re dealing with the fear a stubborn doctor may have cost their daughter’s life.”
We would be more confident that last statement was true if her physician had said it or if they reported she was off life support. She died on the 15th of May. It is difficult to reconcile the outcome and supposed improvement that her father reported.
For reliable information about clinical trials, visit to clinicaltrials.gov. Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay. Unlike Burzynski.
The OTHER Burzynski Patient Group 