On June 19, 1992 my father Lester Mouscher underwent surgery to remove a brain tumor while his wife Karen and I sat in a nearby waiting room.
When it was over the neurosurgeon called us to a private area and told us the bad news. He had cut out most of the tumor, but could not remove roots growing into the brain. Worse, the biopsy revealed it was glioblastoma multiforme, the deadliest cancer known. If treated only with surgery, patients live an average of 14 weeks. More aggressive treatment might extend that a few months, but no glioblastoma patient lives more than a few years. Those roots could double in size every week.
I was numb. Less than 2 weeks earlier, my father and I had been excitedly plotting campaign tactics at a small restaurant in the lobby of the Chicago Board of Trade building. Already the CBOT's Second Vice Chairman, dad had decided to run for Chairman and proudly produced a sheaf of position papers he had written. I couldn't help poking fun at his highbrow style, and as usual he got offended and gruffly demanded suggestions, not criticism. I soothed his rumpled ego, rolled up my sleeves, and nearly 2 hours later we had hammered out the basis for a series of letters to the membership that, I had to admit, was pretty good.
And now his life was ending. I excused myself and walked calmly to the men's room where I sat down, closed the door, and cried.
I thought back to the first time I knew something was wrong. Leaving that restaurant at the Board of Trade, dad looked at a digital clock on the wall and was shocked to see it was already 1:26. Actually it was only 11:26, but he didn't see the first digit. The peripheral vision in his left eye was gone. Soon, people and cars coming from his left side began appearing out of nowhere.
His ophthalmologist ordered a brain scan, in which an MRI (magnetic resonance imaging) machine took detailed films of the inside of his brain. They revealed a tumor the size of a lemon. I had convinced myself it would be benign, making the surgeon's news all the more devastating.
After regaining my composure I joined Karen outside the recovery room, and soon, Dr. Anna McNulty came by. A neurologist specializing in brain tumors, she would now be in charge of dad's care. Dr. McNulty was young and attractive with long, fiery red hair and an outgoing personality. Cheerful and upbeat, she drew bell survival curves emphasizing how long dad might live rather than the certainty he would soon die. She added that she was at the cutting edge of research in the field and that when anything new became available, she was the first to know. That gave me hope, but when I pressed her she admitted there had been no breakthroughs in brain cancer treatment for the past 20 years.
A week later Karen, my father, and I listened as Dr. McNulty outlined her aggressive treatment plan. First dad would have a 6-week course of radiation therapy to the brain, 5 days a week. The purpose is to kill cancerous cells. Because radiation also destroys normal cells, however, treatment would have to be discontinued after a total of 6000 rads (by comparison a dental x-ray is about 1/10 of a rad). After radiation therapy, she would treat him with chemotherapy.
Chemotherapy, she explained, is the general term for treatment with a class of drugs that kill fast-dividing cells such as cancer cells. Unfortunately they also kill "good" cells in the gut, hair follicles, and bone marrow. That's why chemotherapy makes patients sick, makes hair fall out, and destroys the immune system -- many blood and immune cells are manufactured in bone marrow. Highly poisonous, chemotherapy must be administered carefully or it alone can kill the patient. My father would be treated with procarbazine, CCNU, and vincristine -- the latter a nerve poison requiring special caution.
Dr. McNulty had a wonderfully reassuring presence. Her upbeat tone said that everything was under control. But by now I knew that her talk of fighting aggressively was a smokescreen designed to let us hide from the truth if we chose. Listening to what she didn't say made it clear that the treatment would, at best, prolong his life briefly. Getting up to leave. dad looked at Dr. McNulty and hesitated. "I won't see Christmas, will I?" he finally asked. She looked away and said nothing.
My father was shattered. At times the realization he was under a death sentence would plunge him into a deep depression; other times he talked excitedly about "beating this thing." It was hard to imagine Lester Mouscher in denial. He had built his success by being a cold-blooded realist, staring facts in the eye and acting without emotion. Wishful thinking is a luxury successful people can't afford, he'd always say, and when I joined the CBOT as an independent trader, he hammered that philosophy into my brain. I had always seen him as a sort of Mr. Spock. But my father was human after all, and I didn't quite know what to make of it.
Soon after, I asked Dr. McNulty's nurse which was more effective against brain cancer -- radiation or chemotherapy. Radiation, she told me, is known to slow tumor growth, approximately doubling survival time. Chemotherapy had only a 15% chance of prolonging his life at all -- at best it might give him a few extra months.
Back home that evening I logged onto CompuServe, a computer network accessible with a personal computer and modem. CompuServe has hundreds of "areas" where one can exchange messages with people of similar interests. One of them is the Cancer Forum.
The topic of several Cancer Forum messages that night was a book called The Cancer Industry, by Ralph W. Moss. Moss had been Assistant Director of Public Affairs at Memorial Sloan-Kettering Hospital in New York, one of the nation's most prestigious cancer centers. While there, he became disenchanted with the politics of cancer research. When he saw officials cover up favorable test results for a therapy they opposed, he went public with the story and was fired. His book details how, in his opinion, the "cancer establishment" sets research priorities according to political, ego, and monetary considerations as much as by merit.
The medical mainstream considers legitimate only three treatments for cancer: surgery, radiation, and chemotherapy. Moss believes other approaches may also have value but that the $250 million average cost to get a new drug approved by the FDA prevents new approaches from getting a fair trial.
I bought the book and read it just after my father, having completed his course of radiation, left with Karen for a 2-week trip to Jamaica. Reading it made me wonder if -- just maybe -- some obscure therapy existed that was effective against brain cancer but unknown to mainstream medicine. It was a long shot but, for my own peace of mind, I had to look.
I called clinics in Tijuana, Mexico, that treat cancer with special diets and nutritional supplements, and was quickly disappointed. They were vague and got offended when asked for proof of results. I called a few others but could not get solid information.
I left a message on CompuServe's Cancer Forum, asking for leads. The next day, a member replied that Ralph Moss was also on CompuServe and gave me his membership number, or computer "address." I sent Moss an electronic letter outlining my father's situation. Moss promptly wrote back that the most promising experimental treatment for brain cancers was the antineoplaston therapy of Dr. Stanislaw Burzynski in Houston.
I knew of Dr. Burzynski's work because Moss devoted an entire chapter of his book to Burzynski. As a medical student in Poland in the 1960s, Dr. Burzynski discovered certain peptides, which are small proteins, in blood and urine. Later, he learned that these same peptides are at very low levels in the blood of patients with cancer, as low as 2% of levels found in healthy persons. He wondered if those peptides, or a lack thereof, might be related to developing cancer.
A number of experiments indicated that his peptides could reprogram faulty DNA to be normal. We all develop new cells constantly throughout our lives, which differentiate into whatever specialty they are designed for -- lung cell, liver cell, etc. But occasionally an error occurs and a cell fails to differentiate, retaining the primitive characteristics of a cancer cell. If not checked, such cells divide uncontrollably, developing into malignant tumors.
Many scientists believe that we all develop cancerous cells hundreds if not millions of times in our lives, but that our immune system quickly destroys them. Burzynski believes his peptides are part of a previously undiscovered defense system, parallel to our immune system, providing these defective cells with the instructions they need to become normal. He named them antineoplastons, using the terms neoplasm, meaning cancer, and anti, meaning against.
Dr. Burzynski earned his medical degree in Poland, graduating first in his class of 250. At aged 24, he received a doctorate degree in biochemistry, one of the youngest people in Poland's history to have both advanced degrees. Arriving in this country in 1970, he spent several years as a researcher at Baylor University. In 1976, his work caught the eye of the Baylor Cancer Research Center, where he received a $30,000 grant. When asked to become a member of the center and give up his private practice, Burzynski hesitated. Fearing loss of independence and freedom, he decided to go off on his own.
Dr. Burzynski couldn't interest any major drug company in antineoplastons, and he desperately wanted to try them in cancer patients. The normal procedure is to file with the FDA for an IND (Investigational New Drug) permit, and years later Burzynski did just that. At the time, though, such an undertaking -- tens of thousands of sheets of paper reporting tens of thousands of dollars worth of laboratory tests -- was beyond his means.
Dr. Burzynksi decided to go ahead and treat patients anyway. Doing so was legal, provided he did not transport his medication outside of Texas. He consulted four lawyers who, in separate written opinions, agreed. He felt justified on moral grounds because his patients had already tried everything conventional medicine had to offer and were dying. What could be wrong with giving them one last chance at life?
But many doctors saw it differently. To them, he was making an end run around the regulatory and peer-review processes. He was branded a maverick and in the tightly disciplined world of medical science, that label had serious implications.
Dr. Burzynski began testing antineoplastons at the Jack County General Hospital in Jacksboro, a small Texas town that was happy to cooperate. At first, Burzynski isolated his peptides from human urine. Soon he learned how to synthesize two of them, A10 and AS2-1, from readily available amino acids. Different antineoplastons seemed specific to different cancers, and the two he synthesized worked well for prostate cancer, lymphoma, and especially, brain cancer. Composed of very small molecules, antineoplastons easily crossed the blood-brain barrier, unlike conventional chemotherapeutic drugs.
Dr. Burzynski quickly racked up a string of successes against brain cancers thought to be incurable. In a court hearing in 1985, Dr. William Mask, head of the hospital, testified. "There's not any doubt in my mind," he said, "I'm convinced in my 40 years of experience in seeing cancer, this treatment is the best." He also told the judge that he would recommend antineoplaston treatments in place of traditional chemotherapy and radiation, which "kill the good cells as well as the bad cells."
Burzynski's experience there also confirmed that antineoplastons were safe. Medicine describes the toxicity of a substance by its LD50, the median lethal dose at which 50% of test animals die. Dr. Burzynski had trouble establishing an LD50, because he could barely get enough peptides into test animals to kill them. Human patients exhibited no ill effects from even large doses. Aside from an occasional rash and sleepiness, which are easily reversible, there were no side effects at all.
Still, he was treating patients with a drug the FDA had not approved. In 1985, the FDA raided his clinic on suspicion of transporting medication across state lines. Agents confiscated all his patients' medical records, over 200,000 documents.
Later, he published dozens more papers in scientific journals and received several INDs from the FDA. But his early reputation as a maverick still haunted him, and regulators continued to make life difficult. When pressured by the authorities, other "unconventional" practitioners had moved offshore or to Tijuana. Convinced he was right, Dr. Burzynski was determined to stay and persuade mainstream medicine to accept his findings.
I called his clinic and spoke to a woman named Debbie who, unlike the people at the Tijuana clinics, didn't seem to mind my skepticism. In a soft Texas accent she answered my questions for more than an hour, and directed me to independent sources that could verify their results. She also sent me an information packet with reprints of articles and other detailed information about antineoplastons.
The next day, I called the clinic and gave Debbie my father's medical history. A doctor called back and told me they had had good success in patients in similar situations. Having recently undergone high-dose radiation, my father's tumor was probably still small. They saw no need to stop chemotherapy, thus avoiding a conflict with Dr. McNulty.
Further digging revealed that a team of National Cancer Institute brain-cancer specialists had recently visited Burzynski's clinic. Following their inspection, NCI issued a carefully worded report: "The National Cancer Institute reviewed seven cases of primary brain tumors that were treated by Dr. Burzynski with antineoplastons and concluded that antitumor responses occurred." The team presented its findings to a meeting of 22 NCI experts, who were impressed enough to vote to fund four full-scale clinical trials.
I called the NCI and spoke with the neuroradiologist who had audited the brain scans. He told me the data were scattered and he could not comment on percentages. But, yes, he had personally seen five tumors disappear in patients such as my father. "I've been in this business 20 years," he said, "and I've never seen anything like it. I think Burzynski really has something here."
I was thrilled. Could I have actually stumbled onto something? I had one more question: would he be willing to speak with Dr. McNulty? He would, but didn't think there was any point. "Most oncologists are against it," he warned. "They won't look at anything that doesn't come out of a major university or medical center."
By now I'd made up my mind; I wanted dad to try Dr. Burzynski's antineoplaston therapy. But first I had to get Dr. McNulty's blessing. Without it there was little chance my father would listen. I called her at the hospital. "What university is Burzynski with?" was the first thing she wanted to know. I answered that he had his own clinic. "That immediately makes me suspicious," she replied. "Why is he afraid to subject his work to peer review?" "But he does subject his work to peer review," I answered, "He's published in numerous scientific journals."
Dr. McNulty was full of objections. I tried to steer the talk toward the evidence of his success against brain cancer, but she was more interested in his pedigree. She thought ridiculous the notion that an independent doctor operating out of a private clinic could achieve what specialists at major cancer centers could not. I agreed it was unusual, but would not be unprecedented. And because my father was going to die, I saw no harm in trying. Finally, she agreed to read Burzynski's published materials, and I brought them to the hospital.
A few days later she called. "I asked the head of my department about Burzynski," she began in a sarcastic tone. "Do you know what he does? He takes your urine, does something to it and injects it back into you." I tried to tell her that wasn't true, but she wouldn't listen. She didn't like the articles that weren't published in peer-reviewed journals. She objected to the peer-reviewed journals that listed the names of editorial board members but not their institutions. And she rejected the Japanese peer-reviewed journal that listed the names and institutions of editorial board members because she had never heard of them. "How do I know that the University of Kurume really exists?" she wondered aloud.
Even if a top journal had published them, they were Phase I trials, she continued, the purpose of which is to establish toxicity. "You cannot draw conclusions about efficacy from a Phase I trial," she told me. "But what if Phase I trials show the drug is working?" I asked her. "What if it cures patients of previously incurable diseases?" "No," she insisted, "Phase I trials are to establish toxicity only."
Her final objection was to point out that she attended all the major neuro-oncology conferences. If Burzynski were legitimate, she would have heard of him. I reminded her that it often takes time for radical ideas to find sympathetic ears. But that touched a raw nerve, and she became furious. "I have patients die on me every day," she yelled. "I just had a 19-year-old boy die this morning. If there was something that would help them, do you think I would withhold it?"
My heart sank. She would not endorse Dr. Burzynski, and I was sure my father would not try antineoplastons against her wishes. There was just one hope left. Dr. McNulty had expressed admiration for the neuro-oncologists at MD Anderson Cancer Center, a huge medical complex in Houston. If one of them had a good word for Dr. Burzynski, she might change her mind.
I called MD Anderson and asked for one of the two famous specialists she had mentioned. The operator connected me with his nurse. Thinking she would reflect her boss's feelings on the subject, I asked if she had ever heard of Dr. Stanislaw R. Burzynski.
"Hah" she responded, "he's a quack." I asked why she thought so. She seemed stunned that I would question her judgment and responded in a flustered voice: "Well, he's from around here, and everyone around here pretty much accepts he's a quack. You know," she added quickly, "he makes his treatment from urine."
That was the second time a medical professional had cited urine as a reason to discredit him. It struck me as odd, knowing that a number of widely prescribed drugs are made from urine. The popular drug Premarin, for example, is made from pregnant mare's urine, hence the name.
Urine aside, MD Anderson wasn't going to help me persuade Dr. McNulty to change her mind. My father and Karen were scheduled to return from Jamaica in a few days. I spent those days agonizing over how to persuade him to ignore Dr. McNulty's objections and fly with me to Houston and meet with Dr. Burzynski.
It was a long 3 days, and I wondered if I was doing the right thing by pitting myself against his doctor. His faith in her was the foundation of a delicate psychological mechanism he had constructed to deal with his cancer. But whenever in doubt, I kept hearing my father's voice telling me not to lose confidence in myself.
On Saturday, September 12, my father and Karen returned to Chicago. That same day, I laid out my case in favor of trying antineoplastons. I told him up front that Dr. McNulty was against it. But my arguments against her drew from the investing wisdom he had taught me. I reminded him that the secret of intelligent, disciplined decisions is to weigh the facts unemotionally, determine the risks and potential rewards of a course of action, and proceed accordingly. Trust your own judgment. If an expert's opinion doesn't make sense, don't let his or her status sway you. Focus on what you know, and shut out everything else.
And what did we know? That there was essentially no risk in trying Dr. Burzynski's antineoplaston therapy. It was nontoxic. We knew that an NCI audit had found it effective. Last, we knew that if he didn't try something other than chemotherapy, he would soon be dead.
The analogy to investing struck a chord. He straightened visibly when reminded that it was his health, his responsibility and that only he could make the final decisions. Still, McNulty's disapproval bothered him. If antineoplastons really cured brain cancers, why didn't she know about them?
I told him that if Dr. Burzynski's ideas turned out to be valid, his would be a classic case. When Alexander Fleming discovered penicillin his contemporaries ridiculed him. A life-saving drug from bread mold? In the 19th century a courageous surgeon named Ignaz Philipp Semmelweiss noticed that newborn babies were dying of infection when delivered by doctors who had just come from the autopsy lab. When he suggested they wash their hands before delivering, he was literally laughed out of the hospital. Established scientific thought never changes without a struggle, and the breakthrough that finds quick acceptance is the exception, not the rule.
These examples appealed to the contrarian in my father. However, he still wanted to speak with Dr. McNulty and hear her objections. But Dr. McNulty was on a 3-week vacation. I had made a point of telling dad how strongly she opposed Burzynski to prepare him for her objections. Now she would not be around.
On Friday, September 18, dad, Karen, and I flew to Houston for our first meeting with Dr. Stanislaw Burzynski. When we arrived my first thought was "This is the world's most advanced brain cancer clinic?" Located in a small industrial park, tucked between S&B Supply Co. and IN Drill Supply, it didn't fit my image of the only institution that could cure high-grade malignant brain tumors.
We entered into a large waiting area, with comfortable overstuffed couches and tables with rows of perfectly arranged magazines. One part of the waiting area was a sort of children's play area. On one wall were pictures of the Burzynski family meeting the Polish-born Pope John Paul II. On the opposite wall was a poster with a large picture of Einstein and at the bottom a quote: "Great spirits have always met with violent opposition from mediocre minds."
A nurse took dad's medical records. A while later we were called into an examining room, and Dr. Burzynski came in. Actually, he came bounding in. A man in his late forties, of average height, with a Lech Walesa moustache, Dr. Burzynski had more energy than he knew what to do with.
Speaking grammatically flawless English with a Polish accent, Dr. Burzynski told us that his treatment was nontoxic. Unlike chemotherapy, which kills cancerous and healthy cells alike, antineoplastons turn cancerous cells into normal cells and leave normal cells alone. He would not make guarantees, but had had good results with my father's type of cancer. If we decided to begin treatment, dad would have an MRI scan, then another one 6 weeks later. That second scan would tell us if the treatment was working. Dr. Burzynski repeated that dad could continue chemotherapy, but there was little chance it would do much good.
After the hour-long consultation, one of the doctors gave us a list of eight former patients with brain tumors who had agreed to speak with prospective patients. Then we left for the airport.
My father was in terrible conflict. Antineoplastons sounded too good not to try, but if he did Dr. McNulty might tell him to find another doctor. He needed her for his day-to-day care in Chicago. At this point sick and weak, he hated the thought of being abandoned by the doctor in whom he had invested all his faith, and looking for a new one.
Back home, my father called the first patient on the list, a woman who had had a brain cancer only slightly less aggressive than my father's. She also underwent conventional radiation and chemotherapy first, and when the cancer grew back her doctor gave no hope. A friend told her about Burzynski, and she flew to Houston the next day. She told my father jokingly that Burzynski's patients have it easy these days with the new portable pumps -- she had to lie in place 10 hours a day while antineoplastons dripped into her arm. But she wasn't complaining. The tumor had disappeared, and she had been cancer-free for 7 years. Each of the eight patients told a similar story, and each had the same advice: Go now, don't wait. There is no time to waste, and you have nothing to lose. These eight ex-patients finally convinced my father to try it, and I was delighted.
Still he expressed doubts. He wished he could speak with Dr. McNulty but she was still on vacation. The night before we left for Houston, a friend called him and insisted there was something fishy. If Burzynski really had a nontoxic cure for cancer, how come nobody knew about it?
I felt great relief when on Friday morning, September 25, we finally boarded a plane for Houston. Soon after arriving, we drove to a clinic where a surgeon implanted a sterile tube called a catheter in dad's chest. One end of the tube is inserted into a blood vessel; the other end remains outside the body. Through it, a portable pump strapped to his belt would inject antineoplastons directly into his veins 24 hours a day. Then we went to the River Oaks Imaging Center for an MRI scan, his first since the postsurgical scan 3 months earlier.
The next day at the Burzynski Clinic we had our first lesson on how to fill the plastic IV (intravenous) bags he would carry in a waist-pack, and how to program the portable pump. The medication comes in small glass bottles, and every day the patient transfers it to IV bags. [Today, antineoplastons come in IV bags.] Sterile procedures must be followed, and air bubbles painstakingly removed from the bags.
Later that day we got the results of dad's MRI scan, and they were a shock. We had assumed the tumor was still small because he had recently finished radiation treatment. But the cancer had grown back. There were now three tumors, two of which were inoperable, and all were growing rapidly. All of a sudden dad's chances looked poor. One of the doctors told me that if antineoplastons didn't work, he probably wouldn't live more than a month. On the way back to the hotel that day, the last day of September, dad took a deep breath. "Well," he said, "I guess I'll either see Christmas or I won't."
Our stay in Houston stretched to 2 weeks, more time than we had spent together since I was a child. We broached subjects we had never talked about, such as his unhappy marriage to my mother and our own troubled relationship when I was growing up. We grew close in a way we had never been. It occurred to me that even if dad didn't make it, at least we had had one last great adventure together.
Going to the clinic every day also was an adventure. Dr. Burzynski's waiting room was a small community where no one hesitated to ask a newcomer "What are you here for?" We exchanged stories in an impromptu support group.
There was Andrew, a man in his early thirties with grade III astrocytoma, a brain tumor that is deadly but less aggressive than my father's. He had had surgery and radiation and now, after 30 months, his tumor had grown back. It was pressing against a motor center in his brain, and he walked with a pronounced limp. Unable to receive any more radiation, antineoplastons were his last hope. As I write this, 8 months later, Andrew's tumors are slowly shrinking.
And there was Harlan Smith, an electrical engineer I knew from CompuServe's Cancer Forum. He had posted messages from a hospital in Japan where he had taken his wife Betty for experimental treatment. It hadn't worked, and Betty's cancer was spreading. Dr. Burzynski was their last hope. Unfortunately antineoplastons would not work for her. Betty Smith passed away 2 months later.
Returning to Chicago, we met with Dr. McNulty the next day. After seeing the Houston scans she admitted her treatment hadn't worked and took dad off chemotherapy. She complained that the Houston scan's poor quality and the inherent difficulty in comparing films from two different MRI machines made it impossible to tell how much the tumors had grown. All she could offer him now was cisplatin, another highly toxic chemotherapeutic drug that, she conceded, had almost no chance of working. She knew dad was on antineoplastons, and her voice dripped with sarcasm at every mention of Burzynski's name.
Dr. McNulty's disapproval was not lost on my father, who was dazed and disoriented from a seizure he had suffered that morning (seizures are not uncommon in brain tumor patients). Suddenly he blurted out that he wanted to put himself completely in her hands, and that he regretted ever having gone to Houston. He asked what she wanted him to do.
Dr. McNulty recognized that he was terrified she would abandon him and that he would be left without medical support in Chicago. Her tone softened. She told him that he should consider traveling to Maryland for an experimental treatment in which researchers would inject genetically altered herpes viruses into his brain. Those trials wouldn't begin for several months, so he might as well continue doing what he had started. And she assured him that she would be there when he needed her, whatever treatment he decided on.
Two days later dad had a scan taken on the same MRI machine as his postsurgical scan. Now that Dr. McNulty could make a precise comparison, she agreed the tumors had grown tremendously in the 13 weeks since his operation, and had even grown noticeably in the past 2 weeks. My father asked for her blunt prognosis and she gave it: paralysis, coma, then death within a few weeks, possibly a few months.
The antineoplastons, I thought, had better kick in soon.
The news rocked my father, who went home to prepare for his death. Speaking in a breathless staccato that betrayed his emotion, he called his lawyer to take care of final details regarding the disposition of his estate, and resigned from the board of directors of the Chicago Board of Trade.
The next month was long. Dad's tumors were near the motor centers controlling the left side of his body. I watched his left hand constantly for any sign of clumsiness, which would have indicated the tumors were growing. Once, at dinner, he dropped a piece of chicken. My stomach churned, and my mouth went dry.
A month later he had his next scan, in Chicago. If the tumors had grown, that meant the antineoplastons weren't working and the end was near. But the films showed the tumors had stabilized. Dad, Karen, and I were thrilled.
Dr. McNulty burst our bubble. She insisted that stability over such a short time meant nothing. She wanted him to get it through his head that no cure of a glioblastoma multiforme had ever been recorded. If Dr. Burzynski could really do what he claimed, he would have won the Nobel Prize. When my father pointed to Dr. Burzynski's patients in remission, she responded that they must have been misdiagnosed. I silently cursed her for destroying my father's jubilant mood.
Dad asked what would convince her that the antineoplastons were working. She would believe it, she answered, if she saw the tumors shrink.
Soon after, a woman named Christine Kostner called from Houston. Her father had been diagnosed with glioblastoma multiforme, the same brain cancer as my father's. She had gotten my name from CompuServe's Cancer Forum and wanted to hear more about Burzynski. Her family was trying to decide between his clinic and MD Anderson. I told her what I could.
A week later she called to say that her parents had decided on MD Anderson. She preferred Burzynski but her father felt more comfortable in an "authorized" cancer center. The doctors at MD Anderson had helped turn him away from Burzynski by insisting there was "no evidence" that antineoplastons worked.
They were also discouraged by Burzynski's legal troubles. In 1988, the Texas State Board of Medical Examiners began an administrative disciplinary proceeding against him in an attempt to revoke his license to practice medicine, based on the fact that his treatment was not approved by the FDA. The Texas Attorney General has litigated the case on and off since then. In November, his office notified Burzynski that a hearing would take place before an Administrative Law judge on those charges, and scheduled it for early 1993. Aetna Insurance Company had also once sued Burzynski, although that suit was dismissed.
Finally, they doubted Burzynski after reading an article critical of him in the Journal of the American Medical Association. JAMA did not mention that the author, Saul Green, was a paid consultant to Aetna in their lawsuit against Burzynski. Burzynski sent a detailed rebuttal, which JAMA would not print.
JAMA also declined to print a series of letters from Robert Maver. As Director of Research for Mutual Benefit Life Insurance Company, Maver had been asked to investigate innovative new therapies that promised to lower claim costs. Antineoplastons were among them. After several visits to Burzynski's Clinic accompanied by the Director of Medical Services -- a board-certified medical oncologist -- his conclusion was that "We were able to verify unusual remissions in otherwise terminal cancers that we felt could reasonably be attributed only to antineoplastons.... Antineoplastons represent a most promising new approach to cancer..." He added, "My own research files provide ample ammunition to dismiss Green's paper as grossly inaccurate."
In late December my two sisters came from Colorado for the holidays, expecting to say their good-byes to dad. They couldn't believe how good he looked. I could hardly believe it myself. Dad was sharp, witty, and happy. He had made it to Christmas.
On January 4, 1993, 2 months after the previous scan, he had another. This time Dr. McNulty expressed surprise, and her tone was different. She pointed out areas that showed improvement over the previous scan, and added that his neurological condition had improved. Overall she was upbeat and positive, and told him that while she didn't know what antineoplastons were, "If it ain't broke don't fix it. I certainly wouldn't change what you're doing." The official scan report stated there was "minimal decrease" in the size of the tumors.
That approval from Dr. McNulty was the greatest gift dad could have received. "Minimal decrease" in tumor size was well short of remission, but it sure beat paralysis, coma, or death. He was walking on air.
I flew to Houston with the scans to consult with Dr. Burzynski who, by contrast, was dissatisfied. Not content to settle for partial victory, he put dad on a new schedule of injections. The problem, he explained, is that tumor cells can adapt and "learn" to divide when the concentration of antineoplastons in blood is lowest. The solution was to double the frequency of the injections, scheduling them every half-hour instead of every hour. Dr. Burzynski seemed confident this adjustment would turn the tide.
In January I called Christine Kostner in Houston to ask how her father was doing. My timing couldn't have been worse. He had died the day before.
On May 24, administrative law judge Earl R. Corbitt called to order a hearing to determine what action, if any, should be taken against the license of Dr. Burzynski.
Dr. Nicholas Patronas, Chief of the Department of Neuroradiology at the National Institutes of Health, took the stand. The government's top interpreter of brain scans, he testified that prior to his 1991 visit to Burzynski's clinic he had never seen better than "marginal results" for any treatment of malignant brain tumors. "Would you call Burzynski's results marginal?" asked Richard Jaffe, Burzynski's lawyer. "Absolutely not," Patronas replied. "There was total disappearance of tumor in a number of cases. What I saw is almost miraculous."
The state's prosecutor, Dewey E. Helmcamp III, noted that since Patronas wasn't there when the patients were actually treated, he had no way of knowing if they had secretly been treated with another chemotherapeutic agent along with antineoplastons. "If there is another agent that can produce these results," Patronas replied, "then I would like to know its name for my own education."
Eleven of Burzynski's current patients -- most of whom had already tried and failed conventional treatments -- testified to their good results with antineoplastons and their medical need to continue treatment. Four were brain cancers, two ovarian cancers, two non-Hodgkins lymphomas, one prostate cancer, one squamous cell carcinoma, and a patient with AIDS who was doing well enough to have finished third in the Texas State Rodeo Championships a few months earlier.
One of those testifying was Dr. Jay Hylva, a medical doctor and practicing plastic surgeon from Los Angeles, being treated for a highly aggressive form of non-Hodgkins lymphoma. "I'm a scientist," Hylva said, "and I asked Dr. Burzynski to give me the names and phone numbers of 10 patients with my same tissue diagnosis who he's helped. I called them all, and they all checked out."
Before the hearing, my father had another scan. The official report noted "slight decrease in the extent of gadolinium enhancement relative to the prior scan." What that meant, according to Dr. McNulty, is that where there was only white before (indicating solid tumor), there was quite a bit of gray now. That could mean a number of things. A technician might have injected the gadolinium dye (which is what makes the tumors appear white on the film) at a slightly different time relative to the scan. Or the blood vessels of the tumor could have become less porous, leaking less dye into them. "Less enhancement" could also mean less vascularity -- fewer blood vessels -- in the tumors. Or it could mean that the cancerous cells were differentiating into normal cells.
It is now more than 10 months since the "death sentence," Dr. McNulty's prognosis of rapid decline, paralysis, coma, and death. Yet today my father is in better shape than he was then. He doesn't drive anymore but he is up and around, he is optimistic, and in short, he is enjoying life. His tumors are not gone, but they are shrinking slowly. And as long as they keep getting smaller, slow is just fine.
Postscript: I finished writing this story in early June. On June 19, dad had a scan on which the "white area" was larger. Pouncing on that, Dr. McNulty told us that the tumors were growing, the antineoplastons were not working, and they had to be stopped immediately. My father and Karen complied.
I started calling neuro-oncology departments around the country to see if there were any new treatments they could offer. When I described dad's case, everyone I spoke to expressed surprise that he had stopped so successful a treatment on such slim evidence of failure. Typical were the comments of a neurosurgeon who told me that "white areas can represent several things other than tumor. Edema (swelling) and radiation-induced necrosis are indistinguishable from new tumor growth on an MRI scan. We would never stop treatment on the basis of such a scan alone. We have to first see neurological deterioration before determining that a tumor is in fact growing."
Dad tried one more alternative therapy, but it did not help. In late August, he began to go downhill rapidly. By Thursday, September 2, he could no longer walk. On Friday, he could barely speak; by Saturday, he could not swallow. Sunday morning, dad slipped into a coma and about 4:00 PM, as peacefully as one can imagine, he stopped breathing and was gone.
Dad did not have an autopsy, and we'll never know if the tumor was actually growing again or not. But even if it was, there is no question Burzynski's antineoplastons gave him an extra year of life. And it's hard to express how much that extra year meant.
Submitted by Dean Mouscher to the Burzynski Patient Group website.