Category: Burzynski

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:

  1. This article apparently appeared in a tabloid.  OnassisIf 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.”
  2. 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 WJustin BGeorgia MCody 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.
  3. 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 Carol M.’s Story

As we prepare for Burzynski’s upcoming hearing in front of the Texas Medical Board in November, and anticipating that people who happen to have survived Burzynski’s and support him unquestioningly will rally for him as they have in the past, we are telling the stories of patients who have supported him in court, in the political arena, and in the media to find out what happens to patients who defend him. So far we have written about Burzynski patient Elke B., Burzynski patient Douglas W.Burzynski patient Janet C.Burzynski patient Sen. Ed G., McKenzie L, and Alice C. 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.

In September 2011, Carol M. was diagnosed with stage IV, triple negative, inflammatory breast cancer. This is a very bad diagnosis, and the median survival time for patients diagnosed with stage four IBC cancer, according to the American Cancer Society, is about 21 months, which means half of patients live 21 months past diagnosis. The “triple-negative” means that the tumor will not respond to receptor targeted treatments, though it is responsive to other chemotherapy. It’s aggressive and very likely to recur.

As Carol tells the story on April 25, 2012, because she had a younger relative die the previous year of the same disease:

[W]e decided to look for a treatment other than the traditional protocols. A friend recommended Suzanne Somers’ book, Knockout, and, with no other treatment beforehand, we went straight to the Burzynski Clinic. I feel kind of like a poster child for Dr. B.’s Clinic.

She also watched Eric Merola’s uncritical patient exploitation film, Burzynski: Cancer is a Serious Business, which is staggeringly unconvincing to experts, but is eagerly received by the desperate. Suzanne Somers’ medical advice is absurd and dangerous.

As stage IV suggests, by the time the cancer was detected, it had spread through her body. Later we hear that she is watching a large tumor in her breast, two lymph nodes, a tumor in her abdomen, and one on her rib.

In October 2011, Carol is in Houston at the Burzynski Clinic. The regimen she describes is what the clinic sells as “gene-targeted therapy,” but is basically just an untested chemo cocktail with a sodium phenylbuterate chaser. This is the same witch’s brew that was recommended by the Burzynski boys to poor Kathy B. who said that she:

made this video [of a patient visit with Greg Burzynski] 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. FDA put this restriction on the Burzynski Clinic, so any other cancer patients are BASICALLY ONLY GETTING THE TRADITIOINAL ALLOPATHIC TREATMENTS OF SYNTHETIC ANTINEOPLASON PILLS THAT DID NOTHING FOR ME.

We don’t hear what chemotherapies she is using. Breast cancer patient Denise D. ( a truly heartbreaking story) was on Xometa, Xeloda, Zolinza, Tarceva. Real drugs. So maybe we should not be completely surprised that after two months of chemotherapy, in December of 2012, the tumor is responding. A few of the tumors are not visible and there no new nodules on her scan. This is not a miracle; this is chemotherapy.

She signed a petition on Burzynski’s behalf in March, where she describes herself as “stable.”

In June, she reports she is in remission:

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Of course, she has been on chemotherapy, so I don’t know why she is giving Burzynski undue credit.

Then in July, something ominous. Absolutely no details, however:

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On July 30, bad news.

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Carol M. died on Jan 22, 2013, about 16 months out from diagnosis, about five months short of the median survival.

For reliable information about clinical trials, visit clinicaltrials.gov. Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay

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.”

On the 25th:

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.

On the 21st:

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.)

On July 15th we hear:

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:

consent1 consent2 consent3consent2consent3

(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.

 

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.

testimony-1-censored

[…]

testimony-2-censored

[…]

testimony-3-censored

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 Andrew S.’s Story

*An appeal to help get Congress to take action follows this story*
When you read the Caring Bridge blog [the source of this story unless otherwise indicated] from the S. family at the beginning of their story, you may be confused. Andrew was diagnosed with a brain tumor only days after his mother was diagnosed with breast cancer, so the planning for Andrew’s initial round of radiation coincides with his mother’s biopsy. I just can’t imagine what the family has been through.
On the day before Halloween 2007, Andrew has a port implanted. He begins chemotherapy and radiation the next day. He does a week on chemotherapy, but is soon taken off. The same week, his mother has the mass removed from her breast. By the 11th, his mother is able to be with her son at the hospital. The poor kid gets salmonella while in the hospital and has complications from the antibiotic he is on. The family can’t catch a break.
On November 14th, we hear:
Finally, some of you are aware that we have found a clinical trial (in Houston, Texas) that may possibly help Andrew. I will post more information about the trial as soon has I have time.
And the next day:
Finally, there have been some questions about the treatment we are pursuing for Andrew in Houston. Rather than giving you my own interpretation of the information, I’m going to give you a web address so that you can have as much information as you would like to have. Please, go to [website redacted] to check out the Burzynski Clinic. Andrew will finish his radiation treatments here before going there. (His treatment here should be finished around December 14.) They have tentatively said they would like us to arrive on the 26th or 27th of December. We are working out the details.
Andrew will finish radiotherapy before going to Houston. He has a bit of crisis late November, which lands him in the pediatric ICU after his sodium dropped and he was having seizures.
The radiation may be having an effect by the end of the month:
Written Nov 29, 2007 12:32am 
Andrew had an MRI done over the weekend. The report indicates “a large oval shaped mass which appears to originate from the right side of the pons.” (This is part of the brain stem.) The report also states, “…the mass does not appear larger and may actually be minimally smaller.” Dr. Saah said that the MRI itself shows that there is increased space between the mass and the back of the brain and that there is not as much swelling as there was when the first MRI was done on October 25th.
And the poor kid gets a damned kidney stone and UTI for Christmas. He still has salmonella.
Andrew is a clever, thoughtful kid. His parents take down all the weird little things that he says, and you should read them. There is a brilliant innocence in his use of language. My favorite example, I think, comes on December 7th:
Written Dec 7, 2007 8:51am
I’m having a PET Scan this morning, and Andrew has had lots of questions about it. A minute ago he told me, “I’ve had PET Scan.” I said, “You’ve had a CAT Scan.” He said, “Oh. (pause) Well, a cat is a pet, so I thought they were the same thing.”
Good news on the 15th. The cancer has responded to the radiation:
Written Dec 15, 2007 12:27am
Andrew’s CAT Scan report says “…the size of the mass is dramatically decreased.”Evidently this is somewhat unusual–even as a result of radiation. The nurse practitioner who works with oncology at the hospital has requested dimensions so that we have more of a specific understanding of what has happened.
Two days later, he’s back in the hospital passing kidney stones. Also:
They are checking on the possibility of scheduling an MRI (of the brain) for today–while we are still in the hospital. (It was originally scheduled for tomorrow night.) We need this MRI for the Burzynski Clinic.
His first appointment at the Burzynski Clinic is on the 27th at 9AM.
We met with Dr. Burzynski and one of the other doctors today at the clinic. Andrew will be having an MRI in the morning. There needs to be disease progression in order for him to begin treatment with the antineoplastons right away. (This is an F.D.A requirement; this medication is only available to those enrolled in a clinical trial.) If there is something–even something small–in the MRI that would indicate disease progression, Andrew will be able to begin the treatment. If not, he may become a patient of Dr. Burzynski’s in his private oncology practice; he will be treated with an oral medication–already F.D.A. approved–which is in the antineoplaston family. Being treated with this oral medication does not disqualify Andrew from being enrolled in the clinical trial in the future. 
The financial side of this became more of a reality today as we paid–up front–for the consultation and began to look at the payment schedule for treatment with the antineoplastons or for treatment as a patient in Dr. Burzynski’s private practice. Andrew’s medical needs are fully covered in the state of Michigan, but only emergency care is covered out of state. 
It is important to note at this point that the family believes that the treatment has had some success. This can not be backed up with meaningful clinical studies.
On the 30th, this update:
By the time we arrived back at the Burzynski Clinic, it was close to 4:00 pm. One of their doctors went over the films with us; he told us that there had been about a 10% decrease in the size of the mass since the last MRI only ten days earlier. The fourth ventricle of the brain–which had previously been pushed aside by the mass–now looks normal. Another doctor explained that because of this good news Andrew does not qualify for I.V. antineoplastons (one of the clinical trials) at this time. He will be seen in Dr. Burzynski’s private practice instead. 
We met with one of the doctors who works in the private practice, to go over the specifics of Andrew’s situation. We will be continuing to taper the decadron (the steroid). Today we cut the dosage down to 3 mg (from 4 mg) in the morning and 2 mg at night. We also raised Andrew’s zyrtec dosage from 5 to 10 mg to see if that makes a difference with his chronic sinusitis. (This is something that shows up on the CAT Scans and MRIs.) We are discussing the possibility of switching him to Singulair because he also seems to benefit from the use of an albuterol inhaler at times. (Singulair would cover allergy AND asthma symptoms.) Andrew also takes Prevacid (15 mg twice a day)
The day after this consult, a Saturday morning, we get an example of the fine care that you receive at the Burzynski Clinic for top dollar:
We sat in the waiting room until we were the only ones left. I knew that the port needed to be checked, and I had heard that the workers try to be out of the clinic by 11:00 am on weekend mornings. I was becoming concerned about the time, so I said something to the nurse. We were taken to a room at 10:15 am to speak with the doctor on call. I quickly realized that they were not planning to touch the port; it was getting late, and if a problem was discovered it would take too much time to resolve. I had to insist that the port be checked because we needed to know if it was working. It still would not draw, and the area around the port seemed irritated. (Andrew had been complaining all morning.) The clinic staff member wondered if there was swelling and suggested that we go to the Emergency Room.
By the time he gets to the hospital, blood has soaked through the port’s dressing. He is ineligible for the “clinical trial” because he has just had radiation.
Written Dec 31, 2007 1:00am
Someone has asked how we are feeling about the way things are going here in Houston. Andrew is not on the I.V. antineoplastons because he does not qualify for the clinical trials yet; however he is taking an oral medication (sodium phenylbutyrate) in the antineoplaston family. Rather than waiting for disease progression, we are attempting to fight the glioma before it advances. The I.V. antineoplaston statistics are encouraging–about 30% of patients have a dramatic or partial response to the medication (the mass is completely or partially gone), about 30% of patients become stable (no change), and about 30% of patients experience disease progression. Since most of the Burzynski Clinic brain tumor patients are on the I.V. antineoplastons, there are no statistics for the oral medication. One of the doctors said he felt that being seen in the private practice was better for Andrew because the treatment will be based upon exactly what Andrew needs rather than on the strict rules of a clinical trial.
What is so aggravating about this is passage the way the information is presented to them. The stats that they receive is that 60% of patients are at least stable. Burzynski does not have the clinical trials to back up this assertion. A further complication is that “any response” and “complete response” are grouped together in the same group. Seems very disingenuous to me.
Andrew’s mother returns to Detroit to begin her own chemotherapy on the first. It’s amazing how rarely she mentions her own condition as she documents this story. Her priorities are clear.
After the mother left, the Clinic springs chemotherapy on the family:
While [the mother] was preparing to start her chemo, we were surprised to learn that Andrew’s doctors in Houston are recommending a chemotherapy (Temodar) for Andrew which would go along with the oral medication he has been taking. The doctors were wanting to start it today, but the [S family] want to discuss this option — and the possibility of doing it at home — with their oncologists here in Lansing.
He’s back in the hospital trying to pass one of his kidney stones (there are 3) but gets out around the 12th. We soon hear what Andrew is on:
Written Jan 15, 2008 1:41am
Andrew began treatment under the direction of the Burzynski Clinic again today. He will be on three different medications–PB (the oral medication in the antineoplaston family) to help bring into balance the relationship between the oncogenes (onco refers to cancer) and the tumor suppressor genes. (In those who have cancer, this relationship is not right.) The other two medications will target specific oncogenes found to be a problem in Andrew. The first medication will target VEG-F which relates to a tumor’s blood supply. The normal level for this is anywhere from the 40’s to the 90’s. Andrew’s is over 200. The second medication will target another oncogene which is at the very top end of normal in Andrew–right on the borderline between normal and abnormal. Since I don’t fully understand this particular oncogene yet, I can’t explain it! 
On the 17th, a phone consult with the Clinic:
I listened by telephone to the meeting with Dr. Burzynski this afternoon. We are proceeding as planned–with the three medications; we are also lowering the decadron dosage. (We are supporting Andrew with two natural anti-inflammatories while we do this.) Dr. Burzynski indicated that it is unusual to see the results we have already seen from radiation alone, and that Andrew is doing extremely well. We have been told that dramatic response to treatment usually indicates a more aggressive tumor or cancer. He said that sometimes that is true, but not always. 
Things proceed fairly uneventfully until we get the next update:
Written Jan 25, 2008 11:57pm
[…] We had a great appointment with Dr. Gera, Andrew’s oncologist, on Tuesday. She spent so much time with us that she got behind with other patients. We went to have some lunch to give her a chance to catch up; then we went back so she could examine Andrew and talk with us at length about the Burzynski Clinic recommendations. We were having some difficulty at that time getting a doctor from the Burzynski Clinic to contact Dr. Gera. Because of this, we are still sorting out their recommendations and discussing them–along with their reasoning. God has blessed us with a wonderful doctor who truly wants what is best for Andrew and for our family. We are so glad that we are home and that Andrew is under her care!
In mid-February, as the family seems to be off-treatment in anticipation of having the kidney stones treated, the family starts to discuss other, better courses of treatment than the Burzynski Clinic:
Written Feb 18, 2008 10:50pm For several weeks we have been communicating with Dr. Kathy Warren at the National Institutes of Health/National Cancer Institute regarding Andrew. She looked at Andrew’s MRI to confirm the diagnosis (diffuse intrinsic pontine glioma) this past week, and has been very helpful in discussing (by e-mail and by telephone) treatment options with us and with Andrew’s oncologist. We are extremely impressed–and grateful–with how accessible Dr. Warren has been. She is not–yet–Andrew’s doctor; however, she responds to our e-mails and phone calls almost immediately. She has not tried to talk us into the clinical trials she is overseeing, but has presented them to us as options and has been willing to discuss other options (the Burzynski Clinic recommendations) as well. 
I am including part of a note I wrote to Dr. Warren earlier today because it accurately expresses our feelings about Andrew’s situation.
“…We understand the medical bottom line of Andrew’s diagnosis; however, we don’t want to live as if his life is over. He is full of energy, with relatively few physical problems–other than decadron side effects–right now. We know of kids who are doing okay with this diagnosis–2, 3, 4 and more years later. We can’t be assured that Andrew will be one of those kids, but neither can we be assured that he won’t.”
At some point, all mention of Burzynski simply….disappears. At some point I realized that I was simply following another patient’s progress through conventional, experimental treatments.
On March 2nd, we hear:
Andrew will be taking part in an Imaging Study under Dr. Warren’s direction. Dr. Warren’s research nurse is scheduling us to go to NIH some time in April. Dr. Warren has also encouraged us to take Andrew to see Dr. Stuart Goldman at Children’s Memorial Hospital in Chicago. We have already spoken to Dr. Goldman, and the plan right now is to wait to schedule an appointment at Children’s Memorial after we have the results of Andrew’s next MRI on March 10th.
So it seems that something has happened. A decision has been made. You would not know why they changed out of the Burzynski Clinic unless you go to the timeline in the family’s “my story” page:
February 2008
Andrew’s parents decide to stop the treatment recommended by Dr. Burzynski after conducting research and realizing that the children they could find who had been treated at the Burzynski Clinic for pontine glioma had not survived.
The family realized what skeptics know, that what happens in Houston does not save lives. Now, there is a note in March that the tumor had shrunk something like 65% from December. However, we can’t necessarily attribute that to Burzynski’s treatment, as Andrew was excluded from the clinical trial precisely because the results would have been muddied. Thankfully, the S. family had a longer time with Andrew after diagnosis than most families, 25 months, and it’s clear he brought much joy to his family.
UPDATE, July 2014
In private communication from Andrew’s family, we were informed:
“There were red flags for us all along the way, but pulling away from the Clinic was not easy. It’s a cult-like environment. You feel like you are walking away from the group who has the answers. You are going to become one of those people who don’t understand and who don’t believe…. It was traumatic. That is why we simply stopped mentioning it on the website. We officially ended our relationship with the Clinic mid to late February 2008. We just did not know how to explain what we had just experienced.”  
Usually, this is where we would put an appeal to donate to St. Jude’s. You may still do that, if you like, but we are now actively campaigning for an investigation into how the FDA decided to allow Burzynski not only to continue his ridiculous trials, but to actually get a phase III trial after a decade of abominable site visits. Go to thehoustoncancerquack.com and you will find the resources you need to put primary documents–the FDA inspection notes–into the hands of your representatives so they can conduct an investigation. All appeals to understand this made to the FDA have failed, so now we need to press the issue onto the committees that oversee the FDA. Please help us uncover what went wrong so we can fix it and so this never happens again.

Burzynski Patient Andrew B.’s Story

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

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

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

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

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

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

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

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

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

Here’s how Burzynski makes his money:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Oh, hell.

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

defensefund

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

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

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

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

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

And:

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

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

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

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

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

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

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

Burzynski Patient Amanda C.’s Story

On November 28, 2011, mother of 2 Amanda C. of Brimington Common, Chesterfield (UK) was diagnosed with a grade 4 glioblastoma. It’s an aggressive cancer and her prognosis was poor. Doctors quickly determined that the tumor was in too delicate an area of her brain to debulk through surgery, so she embarked on a course of chemotherapy and radiation, which was very tough on her. According to her justgiving site:

Amanda had treatment at Weston Park Hospital in Sheffield, 30 doses of radio & chemotherapy in 6 weeks.

This treatment is very aggressive with severe side effects and Amanda reacted badly to this. It made her very ill and caused her to be paralysed completely on her right side.

It’s a heartbreaking story. By May, according to a post on the Hope for Laura Fund page (Laura is now dead–most of the people who raise enormous amounts of money for Burzynski are) Amanda and her husband are already looking to the Burzynski Clinic:

May 21, 2012 at 3:15pm · Like ‑ Reply

Roger [C] Fantastic news….my wife & I are hoping to visit

the clinic soon…we are in touch with them

The projected cost, at least according to the justgiving site is £200,000 over a two year period.

In August, Amanda’s husband describes the alternative medicines that Amanda is taking:

She’s doing very well…at present. I give her:

1. Boswellia & Turmeric – reduces swelling so less dex steroids
2. Doctor Prasanta banerji Cal phos & Ruta gra 6 – 75% success with brain tumours
3. Curcumin
4. Garlic
5. Reishi Mushrooms
6. Apricot Kernels
7. Soduim Bi carb
8.GLA

Prasanta Banerji has appeared in two other stories on this website, the case of Maryn C. and the absolute extreme of possible harm I’ve ever seen inflicted by purveyors of alternative medicine, the case of Chase S. This Banerji character is a homeopath, which basically means he sells expensive water and placebo pills. Every brain cancer patient I’ve seen taking his remedies is dead. Not exactly a 75% success rate. The other treatments I recognize, apricot kernals (i.e., laetrile–kernels contain a substance that breakdown into hydrogen cyanide, which is as bad as it sounds) and sodium bicarbonate, are disproved and ineffective.

In early September 2012, when a friend posts on the Team Hannah website that they are still fundraising and this goes through to at least October. Burzynski isn’t cheap.

In October, we hear of intense fundraising in the local paper:

But following research into the Glioblastoma Grade 4 brain tumour, [Amanda’s husband] discovered a treatment and possible cure at the Burzynski Clinic, in America, so the couple has set up the Amanda [C] Cancer Trust with fantastic fundraising plans including the charity shop at Unit 16, on Storforth lane, Trading Estate.

[Amanda’s husband] said: “Amanda was told there was no known cure for this type of cancer and she had only three months to live. This was devastating for the whole family.

“But now the Amanda [C] Trust has been set up in a bid to raise awareness about brain cancer and to raise funds for Amanda’s treatment in America.”

This charity shop seems to be a business set up to support Burzynski. Indeed, fundraising went through December and beyond. According to an article in the local paper that ran on 27 December:

A Matlock fundraising event raised £500 towards pioneering cancer treatment.
A book sale was held at the County Hall organised by the Derbyshire county 

councillors’ secretarial team to raise money for Amanda [C]. […]

Cllr Chris Jackson, vice chairman of the council, said: “I was very pleased 
to support this very worthy local cause and staff did a great job at helping to 
raise £500. The county council supports many organisations through the year 
in a formal way but small unofficial fundraising events like this can 

make just as important a difference.”

Amanda was worth it. Burzynski is not.

Following this, Amanda apparently visited the Burzynski Clinic in Houston in December, and she appears in the Derbyshire Times on March 6, 2013.

AmandaC

This article suggests that she was there for about a month, which is more or less standard when someone is put on Burzynski’s protocol. This is because patients’ caregivers are required to learn how to administer the drug. This fact, that lay people were routinely charged with programming the chemotherapy pumps, may have contributed to the over 100 overdoses that the FDA observed in patient records during an inspection of the clinic at about the time Amanda was there.:

Amanda [C], 46, spent four weeks at the Burzynski Clinic in Houston, Texas, in December where she received a pioneering drug in a bid to prolong her life.

Her husband […] was also shown how to administor the Antineoplaston (ANP) drug at home.

And despite a few set backs since their return from Houston, things are starting to look up.

[Amanda’s husband] said: “She has had her first scan and the doctors in America are pleased.

“The tumour is stationary and over the next few months we are hoping it decreases in size.”

The relentless positive attitude here is in some ways heartening, but it’s also discouraging, especially if we look at the record of her progress captured on social media. Before the above article was published, Amanda reported that she was taken off ANP (Feb 1), back on (Feb 3), off again because of bad blood values (Feb 18), had a seizure (Feb 20), and had increasing symptoms and her Hickman line replaced (5 March). All of this happened BEFORE this the article published on March 6th. Now, I understand the importance of being positive, but glossing signs of disease progression and complications as “things starting to look up”–and I fault the newspaper for not fact-checking–it can give a false impression of antineoplastons’ efficacy. A much more striking and higher profile case of a sharp difference in what actually happened and what was reported in the press was the case of Amelia S, when a paper crowed that she was returning to school, omitting mention of the logistical juggernaut that had to be assembled to make that happen. Burzynski has thrived on lazy journalism, and it’s probably why the Clinic pitched a fit when a real reporter paid the story as much attention as they did in November of last year, when he appeared on the cover of USA Today. Burzynski is apparently not used to real reporters.

Amanda was back on ANP on March 8, but suffered a bad fall only a few days later. The family continued to raise funds for treatment, which by their estimate was $8500 a month. Amanda died in May.

Please donate to St. Jude Children’s Research Hospital, which does real research into brain tumors. If you want to take further 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 relevant search results.

Burzynski Patient Claire F.’s Story

*An appeal to encourage Congress to investigate this follows Claire’s story*

Claire F., mother of two, was diagnosed with invasive ductal carcinoma in May 2007 and underwent the underwent a normal course of therapy in the UK, surgery and chemotherapy. In January 2008, she was found to be in remission. She started dating and fell in love with “C,” an old friend. On Christmas 2009, C. proposed. They booked a church and planned to marry on her 40th birthday in October. In May, however, a lump appeared in her neck. She tells the story on her website:

My GP put me on antibiotics, thinking the lymph nodes had probably come up due to a cold I had. Unfortunately, the antibiotics didn’t do anything, so I was once again referred to the breast clinic. Another painful biopsy was performed on my neck the very next day. The results of this showed the cancer had returned to my lymph nodes. I had an operation a week later to remove the lymph nodes in my neck. Unfortunately, one of them couldn’t be removed because it is attached to my jugular. Removing it would have caused me to bleed out. A few days after the surgery I had routine CT and bone scans to check for any spread of disease. The scans showed the cancer had spread to my spine and my right lung, as well as my neck. I was told I would be lucky to survive the next five years. I have been back on chemotherapy since July of this year [2010]. They’ve put me on oral chemo this time, which I can take at home and the side effects aren’t too bad.

Claire and C. went forward with planning the wedding and held it as planned, Claire taking a break from her chemotherapy so that she would be at her best that day. The next day, however, they got her scans from an previous test and learned the cancer had spread. She was on a new treatment but looking ahead:

My Mum has recently heard about a doctor in Houston, Texas, Dr Stanislaw Burzynski, who has been conducting clinical trials into gene therapy for over 30 years and how it can treat cancer without causing the unwanted side effects of chemotherapy. Gene therapy is apparently the way forward in treating, sometimes completely eradicating, cancer cells. My husband and parents are of the opinion that we must try everything possible, otherwise we would never forgive ourselves for not giving it a go. This treatment is groundbreaking but unfortunately very expensive.

We have estimated the costs for treatment, travel and accommodation to be in the region of a staggering $100,000 (approximately £65,000). As none of us have this amount of money to hand, we are planning all sorts of fundraising events. So far, my Mum has managed to raise around £15,000 from family donations, which is amazing and is enough to get me and my Dad to Texas, pay for our accommodation and have all the initial tests and treatments out there. We have to stay there for up to a month the first time we go, hence the costs. [C.] and my Mum will stay home to look after the girls.

A major reason we are writing this site is that these patients don’t fall into the trap that the Burzynski Research Institute’s antineoplaston trials are anything like respectable. Antineoplaston therapy is no more gene therapy than is eating a banana. It is at this point that Claire is at her most vulnerable. She has been given 5 years at the most to live, has two girls, and is just married. She deserved to participate in a legitimate clinical trial that had a chance of prolonging her life. The Burzynski trials were appalling parodies of the scientific investigation, ones that seemed designed to rope in as many paying patients as possible. In a recent site inspection following the death of a child, the FDA made the following observations:

Among the newly released observations by FDA inspectors:

  1. Burzynski (as investigator, the subject of the inspection) “failed to comply with protocol requirements related to the primary outcome, therapeutic response […] for 67% of study subjects reviewed during the inspection.” This means that several patients who were reported as “complete responses” did not meet the criteria defined in the investigational plan, as were patients who were reported as having a “partial response” and “stable disease.” This means that his outcomes figures for these studies are inaccurate.
  2. Additionally, some patients admitted failed to meet the inclusion criteria for the study.
  3. Even though patients needed to have a physician back home to monitor their progress prior to enrolling in a trial, the FDA found a patient who began receiving treatment before a doctor had been found.
  4. Patients who had Grade 3 or 4 toxic effects were supposed to be removed from treatment. One patient had 3 Grade 3 events followed by 3 Grade 4 events. Another patient had 7 disqualifying toxic events before he was removed from the study.
  5. 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.
  6. 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.
All of that is included in the first observation. The second observation showed that Burzynski failed to maintain the records required by his protocols. Specifically:
  1. “Your […] tumor measurements initially recorded on worksheets at baseline and on-study treatment […] studies for all study subjects were destroyed and are not available for FDA inspectional review.” This is one of the most damning statements, as without any…not a single baseline measurement…there is no way to determine any actual effect of the antineoplaston treatment. This means that Burzynski’s studies–which by last account cost $30,000 to begin and $7000 a month to maintain–are unpublishable.
  2. Some adverse events were not reported to the Burzynski Clinic IRB for years. (One patient had an adverse event in 1998 and the oversight board did not hear about it until 2005.)
  3. The FDA observed that the informed consent document did not include a statement of extra costs that might be incurred. Specifically, some informed consent documents were signed days to weeks before billing agreements, and in a couple of cases no consent form could be found.
  4. The clinic was unable to account for its stock of antineoplastons.

To summarize. The FDA observed that Burzynski’s success rate was inflated, crucial patient records had been destroyed (as far as we can tell, rendering all of his trials completely unverifiable and unpublishable–if Claire was indeed on a trial, her case would not count toward the scientific understanding of antineoplastons, a costly betrayal), that there were numerous serious toxic events, many of which went unreported for long periods of time, that patients were denied informed consent, that paying patients were allowed on the studies who shouldn’t have been included and that patients who should have been dropped were kept on longer than they should have been, and that Burzynski had violated his own protocol.

On Dec 14 of 2010, we hear from her on her webpage:

Thanks for all the well wishes over the last few days. I got my scan results today. They show that the combination chemo drugs haven’t succeeded in shrinking my tumours. My spine is still stabilised, but the neck & lung lesions have grown slightly (again). So, I am going to be put on a different chemo regime, this one is called Gem-Carbo and it’s intravenous, rather than oral treatment. I’m hoping to start this before Christmas. Next week, I’m going to be having daily radiotherapy to my neck to shrink the lymph node that’s been left there, as it’s now giving me some discomfort. The plus side is that my liver and all my other major organs are clear. My oncologist is referring me to see a doctor in Charing Cross hospital, who is aware of the doctor in Houston and his gene therapy treatments. This will arm me with much more information before I head off to Texas. Could be better news, but it could also be so much worse! Xxx

Her radiation treatment is intense and knocks her down a little. Then, right at the end of the year we hear:

The original plan was for me to travel to Texas yesterday, but a couple of weeks ago, my oncologist sent a referral for me to see a professor at the Charing Cross Hospital in London. There are links between Dr. Burzynski in Texas and the Charing Cross Hospital, so my doctor thinks it makes sense for me to see the guy in London and get armed with as much information as possible, before flying out there. My Mum has also recently discovered that there is a clinic in Zurich, Switzerland, which has doctors working under Dr. Burzynski’s guidelines. I am still waiting for the London appointment to come through. As soon as it does, we will know exactly where I’m going and when, but please rest assured that all the money which has been so generously donated will go directly towards my treatment. If I’m able to go to Zurich instead of Texas, the money we’ll save on travel and accommodation will probably pay for at least an extra month’s worth of treatment, which is fantastic. Better still, I won’t have to be so far away from my husband and children for so long!

This is unusual. This is the first we’ve heard of a Zurich clinic. Nonetheless, Claire’s oncologist is mistaken. The physician, Professor Coombes, it turns out, does not have ties with Burzynski, but with a reputable research institution in Houston, MD Anderson, as we hear on Jan 18th:

Just to fill you all in on Friday’s appointment. It didn’t go as well as we hoped it would, because Professor Coombes is linked to another clinic in Texas, the M.D.Anderson Clinic, as opposed to the Burzynski Clinic which we were hoping to get more information on. Having researched Dr Burzynski more over the weekend, the plan is still to visit him to see what he can do for me. His work is still in the clinical trials stage, which is why he’s not known worldwide (and why it’s so flipping expensive!). I feel a little bit deflated about this, but we’re still going to go ahead. We have to try everything that’s out there. [C.] has been in touch with some patients of his who absolutely swear by his work.

And the Burzynski Patient Group rears its ugly head, pulling another desperate family into Burzynski’s clutches. In all the years he’s been in “clinical trials” he should have been able to produce a single finished, published, credible study. Claire deserved better. She deserved MD Anderson. On the 2nd of February, she has her Hickman line put into her chest, which is how her antineoplastons will be administered. The traditional chemo is having a positive effect, however, as we hear on March 4th:

Just got back from my results appointment and the news is good! The tumours in my spine and my neck have stabilised, my brain is clear, I have no new disease anywhere else in my body, the new swelling in my neck is muscle damage from having the hickman line put in (which can be treated with physio) and the best news of all is…. the tumour on my lung has shrunk by 1cm!!! This all means that the new treatment is working and I’m raring to go ahead with the next dose tomorrow. I don’t care how crap it makes me feel, it’s working, WOOHOOO!!!! My Mum was crying her eyes out, God love her. The next step is to go and see Professor Coombes again in London, then it’s Texas, here we come!! Thanks to all of you for the thoughts and prayers, they’re obviously working too! xxx

In the meantime, her family and friends are raising money for Burzynski like crazy. By June, however, she still hadn’t gone out to Texas. She is facing some infection issues and she gets violently ill when she starts Taxol, as we hear on June 13:

[C.] contacted the clinic in Texas, just to make sure I can have their treatment whilst on chemo and I can! So I started the taxol today. I feel fine at the moment, just very tired.

Interesting. How would you be able to sort the effects of the chemotherapy from any result the ANP would have? (Answer: you can’t. Worst researcher ever.) She returns from the hospital on July 1. As Claire said:

Two weeks ago, I didn’t even have enough energy to lift my head from my pillow and the team have really got on top of my pain management. So, I am now pain and sickness free and [C.] and I have been looking into leaving for Texas in two weeks’ time. Flights, car, accommodation and, most importantly, the Burzynski Clinic are all ready for us. The clinic have had all of my medical notes and have said I am eligible for their treatment. All I have to do now is convince Dr. Shah to reinstate my fit to fly letter and get some insurance, then we’re off! I’d like to say a massive thank you to all of you for the donations and lovely messages I’ve received over the last few weeks. I’m completely overwhelmed by this and the support it has given me has been tremendous for my emotional wellbeing. Most of all, I’d like to thank [a friend] and my parents for looking after me, my children & my blog (!) and for pulling out all the stops to arrange this potentially life saving trip, whilst keeping a bedside vigil for me.

Claire and her husband meet Burzynski on July 18th:

We had our first appointment at the Burzynski Clinic today and got to meet Dr. Burzynski himself, which was a real honour. Today’s appointment was for consultations with the doctors, blood tests and a meeting with the financial team. […] The next step is for me to have full body PET and CT scans. These will take place either on Tuesday or Thursday of this week. In the meantime, I am going to be started on tablets tomorrow (tuesday), which are a form of gene therapy. We will also be meeting a nutritional specialist, who will give me a list of what I should and shouldn’t eat whilst on the treatment. I’ve already been told today to avoid sugar, bread, pasta and rice… some of my favourite things! That’s you all up to date for now.

On the 23rd we hear:

After taking just 2 doses of the antineoplaston medicine, I spent all of Wednesday night being violently sick and ended up being carted off in an ambulance during the early hours of thursday with ridiculously high blood pressure and pulse rate. The staff at the emergency room were amazing and they gave me an anti-sickness drug and morphine for the pain. Then they hooked me up to a saline drip for a couple of hours to rehydrate me. I felt better in no time, just very tired and weak. We were handed a bill for $1,250 and put in a taxi back to our hotel. Thank God I took out that insurance policy, hopefully we’ll be able to claim most of this cost back when we get home. Thursday was a write off as I spent most of the day trying to catch up on sleep. I missed my appointment at the Burzynski clinic because of it. [C.] phoned the doctor there and they’ve re-schelduled [sic] my appointment for Monday, giving me the weekend to completely recover from the sickness. Needless to say, I’m not taking the antineoplaston doses for now.

It’s hard to tell what treatment she is on, honestly. She was on “pills” which suggests she is on sodium phenylbutyrate, but she seems to think that it is antineoplaston (PB is a prodrug for the components in ANP). She has been given a liquid form of it, however. The tumor in her neck was pressing up against her vocal cords, and it seems likely that her swallowing is problematic. It does not sound like she is on a clinical trial. You will notice the huge range of side effects that she is suffering, including high blood pressure and tachycardia–these could be direct results of the massive sodium load that Burzynski’s patients have to carry, which can lead to hypernatremia.

The Clinic starts her on Herceptin and Avastin, both common breast cancer drugs. It sounds like she is taking the chemo cocktail route, wherein chemotherapies that have not been tested together are administered to patients. Burzynski sells this as “gene-targeted therapy.”

On July 18th, Claire’s husband notes what is happening:

Time is passing by, we’ve been here for over a week already and we’ve still yet to get Claire started on any treatment that she can tolerate and give us a plan of action to take back to the United Kingdom to present to our Doctors.

The three drugs that have been proposed by the clinic total at $13,825 per month which works out at roughly £8,413 back home.

Once Claire has been cleared to start this treatment we are hoping to get at least two weeks worth here before returning home and then looking to continue the treatment with the NHS and the clinic working together.

Dr.Rakhmanov ( in charge of Claire ) has already said that he will personally fax the plan of action to Claire’s oncologist and does not believe that Claire should have any problems being treated with two of the three proposed drugs, he does however feel that one of them may be controversial but we will have to deal with that if and when it happens.

Of course, the NHS decides that it will not foot the bill, which means more fundraising. On the 14th of August, we hear about her progress, as she is back home in the UK. She’s had it tough:

On Monday of this week, I had my discharge appointment at the Burzynski Clinic. When we arrived there I was in terrible pain on the right hand side of my back, the pain was so bad that I was in tears and quite short of breath. The nurses saw I was distressed and took me to another room to be put on oxygen. This really helped and I felt better in no time. We had the discharge appt, settled our bill for all the drugs/assistance we’d had so far, had our photo taken with Dr. Burzynski and left the clinic.

That photo was posted on her webpage:

Clairejpg

She goes on:

Half way though the flight, I started to get the same back pain I’d had on Monday. Remembering oxygen had helped me then, I asked the stewardess for some. She obliged and I soon got a little audience! But I didn’t care, it was making me feel better.

That Friday, back home, she got up to answer the door and passed out. After she started coughing up blood, her family took her to the hospital, where she was diagnosed with pneumonia. She was in the hospital until the 28th, and then when she came home, she was leveled by a hospital acquired infection.

On 21 September, Claire died. Burzynski’s treatment does not appear to have done anything, but he got his cut.

Usually, this is where we would put an appeal to donate to St. Jude’s. You may still do that, if you like, but we are now actively campaigning for an investigation into how the FDA decided to allow Burzynski not only to continue his ridiculous trials, but to actually get a phase III trial after a decade of abominable site visits. Go to thehoustoncancerquack.com and you will find the resources you need to put primary documents–the FDA inspection notes–into the hands of your representatives so they can conduct an investigation. All appeals to understand this made to the FDA have failed, so now we need to press the issue onto the committees that oversee the FDA. Please help us uncover what went wrong so we can fix it and this never happens again.

Burzynski Patient Amelia S.’s Story

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.”

On the 25th:

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.

On the 21st:

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.)

On July 15th we hear:

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:

consent1 consent2 consent3consent2consent3

(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 the 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.

 

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.