Guest guest Posted June 28, 2003 Report Share Posted June 28, 2003 " postman23_2000 " Fri, 27 Jun 2003 20:18:39 -0000 Good Housekeeping Magazine, Dr. Burzinszki and Yuk, Saul Green Golden Duck Winner Good Housekeeping's " Desperate Measures " January 1996 ----------------- " Desperature Measures " , by Molly Glentzer Good Housekeeping Magazine, January 1996 " My discovery will save millions of people, " says Dr. Burzynski, who nearly lost his medical license recently. Scores of cancer patients call this Texas doctor a miracle worker. The medical establishment calls him a quack. Who's right? You be the judge. These days, Lorraine Stude answers the phone tentatively. She's been receiving calls from someone who won't identify herself. The woman says that Stude has God's grace, then recites a litany of personal problems as if He might be listening and hangs up. In her small farm community of Garfield, KS, Stude has become a minor celebrity. Everyone has heard that medical experts can't explain why she's still alive. Obviously some people think that since she has been granted a miracle, others might be in store. Stude, 35, her husband, and their two sons raise cattle, wheat, hay, and soybeans. They, like their neighbors, are used to unexpected challenges from nature. But the family wasn't prepared for the blow that came in October 1992. Lorraine Stude had been depressed, with severe headaches for several months, when her family doctor finally ordered a CATscan. The results came on her thirty-second birthday: She had an aggressive, incurable brain cancer. Ask anyone who has ever struggled with a cancer prognosis: You want to know immediately whether you'll recover; and if not, how long you have to live. No matter how delicately your doctor avoids absolutes, your thoughts are already in chaos. Mortality breathes down your neck like a monster with a stopwatch. If you have young children, the urgency is amplified a thousand times. Stude's cancer is a glioblastoma multiforme, entwined through her brain stem like tiny branches. Most people with this cancer live less than two years, even with treatment, so she knew it was highly unlikely that she'd live to see her boys, 8 and 12, grow up. But the Studes were determined to fight. Their treatment odyssey took them to hospitals 20 miles away in Great Bend and 85 miles away in Hays. There was surgery to remove as much of the tumor as possible, followed by two months of radiation and four courses of chemotherapy. Stude lost her long brown hair, and became nauseated, farigued, dehydrated. Swelling in her brain caused intense headaches. To curb them, doctors prescribed steroids that added 64 pounds to her once willowy 5'9 " frame. She often felt that the treatments made her more sick than the tumor. By the summer of 1993, two more tumors had appeared in her brain, and they were growing as fast as if she'd had no treatment at all. She lay helplessly in bed while her mother-in-law ran her house and drove her boys to band practice and ball games. When her oncologist suggested one more round of chemotherapy, admitting it would only extend her life by a few months, Stude declined. " I was so sick, it wasn't worth it, " she says. One of the last things the doctor told her was, " There's nothing else out there. " Mike Stude refused to let his wife give up. He found an experimental gene therapy study in Iowa, but the program wasn't yet ready for patients. The Studes were considering a trip to Mexico to try some kind of " miracle water " when Lorraine's brother called to say he'd seen a doctor on TV who had a medicine made for her kind of cancer. Former patients said they'd been cured. It was expensive, but it was nontoxic, so there'd be no serious side effects apart from farigue. The Studes were frantic to meet the doctor. For 18 years, Stanislaw Burzynski, M.D., Ph.D., has treated patients with a drug he created that doesn't have FDA aproval. In the process, he's been called a quack and a scofflaw, been served more court summonses than he can count, and earned a prominent spot on the American Cancer Society's " unproved methods " blacklist. Now he's under grand-jury investigation; while the details are still being kept secret even from Dr. Burzynski, he suspects the issue at stake is whether he is illegally shipping his medicines across state lines. (He maintains he has never done this.) Dr. Burzynski's controversial medicines, called antineoplastons, are derived from peptides, which are fragments of protein. In the early days of his operation, the peptides were isolated from blood. When that became too expensive, he switched to deriving them from urine, which was drained from urinals at public parks. Now the antineoplastons are synthesized chemically in a laboratory. Two years' treatment can run up a tab of more than $100,000 - - a cost seldom covered by insurance. None of this seems to matter to his desperate patients. Lorraine Stude first visited the Burzynski Clinic in Houston in August 1993. Within two weeks of beginning antineoplaston treatment, she was free of headaches and able to wean herself off the steroid. She sits now near the sliding glass doors of her dining room, surveying her family's wheat fields. After two and a half years on the treatment, she feels more normal than she has in a long time, except for the stroller at her side. She wheeled her sons in it when they were babies: now it holds an IV pump that sends antineoplastons to her veins through a chest catheter 24 hours a day. Like all of Dr. Burzynski's patients, she changes her own IV bags at home. At her latest checkup in October, no signs of the tumors were found. Stude is lucky in other ways, too: although she and Mike spent about $21,000 at the start of the treatments, their insurance company began covering the antineoplaston therapy after her scans showed improvement. She hopes to be off the IV soon; then she'll take antineoplaston capsules for a few months to complete the therapy. Stude's family doctor, Nasreen Shah, M.D., is uncertain about how to explain the tumor's disappearance. " It's very tricky, " she says, " because tumors regress spontaneously, too, sometimes. " Could spontaneous remission also explain the case of Pamela Winningham, 43, of Skillman, NJ, a former patient of Dr. Burzynski, who is now cancer-free? These days, Winningham is doing exactly what an oncologist suggested in 1987, after surgery and high-level radiation hadn't stopped the growth of her anaplastic astrocytoma (another form of brain stem cancer). " He said, 'Eat, drink, and be merry,' " she recalls. " I was confused. I said, 'Excuse me, what do you mean?' And he said, 'You have about six weeks to six months to live.' " Like Stude, Winningham discovered Dr. Burzynski through TV. She began antineoplaston treatments in June 1988, when they still required sitting with a nonportable IV drip for eight hours at a time. Within three months, her tumor stopped growing. Winningham recalls, " My radiologist was skeptical, but astounded. " By January 1989, her brain scan was clear. By March, after completing ten months of daily tretment, she was in full remission. Her MRIs have now been clear for seven years. (Most cancers are considered cured after they've been in remission for fiveyears.) Winningham still copes with the lingering side effects of radiation and surgery: One side of her face is partially paralyzed; she sees double, has poor balance, and can't feel heat or cold in her left fingers and toes. But she's philosophical. " Those are just things you live with, " she says cheerfully. Ellen Trocchio of Lubbock, TX, has been in remission for 16 years. One of Dr. Burzynski's earliest patients, Trocchio, 52, was only 26, with a husband and two young sons, when she was diagnosed with papillary mesothelioma, a rare cancer caused by asbestos exposure. Surgeons at Memorial Sloan- Kettering Cancer Center in New York City, removed the polyps, along with six feet of her intestines. Nine years later, after she and her family had moved from New York to Texas, the cancer returned in her ovaries and lower abdominal cavity. This time, doctors said there wa nothing more they could do for her. They gave me two years to live, and that was it, " she says. " I sent letters to the Mayo Clinic and all over the country. Everybody said, 'We're sorry you have that, but we can't help you. " Her brother-in-law had seen Dr. Burzynski on a TV show. She called him; he made no promises , but agreed to treat her. " Nine months later, the cancer was dissolved, " Trocchio says. " For ten years, I was on two hundred and fifty or more pain pills a month. After the first two weeks of antineoplaston treatment, I was able to go off them. Even I couldn't believe it. " Dr. Burzynski 's clinic provides potential patients with the phone numbers of more than a dozen former patients who have compelling stories about remission. Winningham and Trocchio sometimes receive several calls a week from people frantic for a cure, but they dont mind. " You hear stories and it brings you right back, " Winningham says. " If I can give anyone hope, I'm glad to. " But there isn't a happy ending for everyone who goes to Dr. Burzynski. Joylene Moellering of Fredericksburg, TX, was upbeat and optimistic last March after two weeks of antineoplastic treatment. In fact, she looked glowingly healthy, especially considering that surgeons in Austin had reoved a glioblastoma multiforme the size of an egg from her brain only the month before. Over their objections she opted for antineoplaston therapy as a followup rather than radiation or chemotherapy. Moellering, 54, died in early May. How many patients are being fed false hope? Dr. Burzynski can't say; nor does he even know what percentage of his patients have gone into remission. He claims high " response rates " for noncurable brain and prostate cancers; as well as good response rates for -- in descending order -- non-Hodgkin's lymphoma, pancreatic cancer, and breast, lung, and colon cancer. But response rate doesn't mean " cure rate. " " Some patients relapsed and died soon, " Dr. Burzynski admits. But he argues that's because many patients come to him too late and too weak from chemotherapy; that antineoplastons are not a magic bullet; and that " there are some types of cancers where we don't see any response at all. " Patients see this kind of talk as straightforward and frank, but it makes some medical professionals angry. " Response rates " are only anecdotal evidence and can't take the place of rigorous scientific studies, which are generally required for FDA approval. But in spite of improvements in cancer treatments, about a half million people still die of the disease every year. This has created a huge market for alternative therapies for frustrated and desperate patients. According to a landmark New England Journal of Medicine study, nearly one fourth of Americans who try unconventional therapies are cancer patients. The dizzying array of options -- all unproven -- includes everything from nutritional supplements and special diets to non-FDA approved drugs and such herbal and folk remedies as eating shark cartilage or drinking tea derived from tree bark. Unlike some alternative practitioners, Dr. Burzynski has an air of credibility that either makes him more real, or more dangerous, depending on your outlook. He earned an M.D. with a Ph.D. in biochemistry in his native Poland. In 1970 he fled to the United States and worked for several years at Baylor College of Medicine in Houston, where he did research and at the same time passed the exam for a license to practice medicine in Texas. His problems began when he opened his clinic in 1977. He was already using his drugs on patients. This wasn't illegal; in Texas, doctors can prescribe " any drugs, remedies, or clinical supplies as are necessary to meet the patient's immediate needs. " But it was a flagrant violation of accepted scientific protocol. This is why, for nearly 20 years, the FDA and the Texas State Board of Medical Examiners have tried to shut down his operation. As for Dr. Burzynski's successes, Saul Green, Ph.D., a New York City-based private cancer researcher, suggests, " If it's the least bit possible that previous treatment could have caused a remission, then there's no evidence that his treatment works. " Results of radiation and chemotherapy can manifest themselves months after treatment has ended. But Dr. Burzynski has also successfully treated patients who haven't had any chemotherapy or radiation - - to which doctors argue that the stage and aggressiveness of the cancer, and the patient's age and general health, also influence his or her survival. " The world is full of people whose doctors told them they're going to die, " says Martin Raber, M.D., physician in chief at M.D. Anderson Cancer Center in Houston. About half of all patients given a cancer diagnosis this year will be " cured, " he says. And while spontaneous stabilizations are rare and " very much a mystery, " they do happen. Likewise, there is anecdotal evidence that a positive attitude plays a role in a patient's recovery. Dr. Raber doesn't see harm in patients seeking alternative treatments -- if they are a last resort, if they work, andif they don't leave families penniless. But he's concerned about patients with a better medical prognosis who make unproved therapies a first choice. " When I think about patients I've treated, " he says, " the ones I remember were the tragedies in which people with good prognoses threw away a really good chance to cure their cancer. " Such patients may be tempted to try alternatives because they fear the debilitating side effects of mainsteam therapies. Chris McDonald, 44, of Occidental, CA, was terrified when, in 1990, she was given a diagnosis of non-Hodgkin's lymphoma throughout her lymphatic system, bone marrow, and spleen. Lymphomas are considered treatable with bone marrow transplants or chemotherapy. but McDonald, a lawyer and a single mother with young children, agonized over both options. " My take on what they meant by 'treatable' was life extension, not a cure, " she says. A bone marrow transplant, although it had a good success rate, would have required two months in isolation, away from her children, Evan and Lucy, then 3 and 4 years old. " They basically give you a high dose of chemotherapy and then insert bone marrow stems, " she says. " You can go through that whole procedure and then have the stems grow back with cancer. " Chemotherapy didn't seem much better; increasingly stronger and more debilitating doses would have given her about a 13-year life expectancy. " " You have a life witing for the cancer to come back, " she says. It didn't help that her mother had died of lung cancer while undergoing chemotherapy. McDonald didn't rule out conventional treatment entirely, but she decided to save it for a last resort only. Her oncologists at Stanford University Medical Center monitored her CAT scans while she tried a strict macrobiotic diet, acupuncture, " colonic cleansing " (enemas), and yoga. The regimen was so time-consuming and stressful that she had to phase out her legal practice; and by May 1993, her cancer had begun to spread. At the rate it was progressing, she was about six months shy of needing chemotherapy. " I figured I'd give Dr. Burzynski three months and if that didn't work, I'd have another three months to try something else, " she says. McDonald began taking antineoplastons in December 1993. She was queasy at first about the chest catheter and IV bags, but appreciated that she could live a close-to-normal life. The cancer has slowly regressed. She no longer sees an oncologist, and she hopes to soon be off the ten-pound pump she carried in a fanny pack. Mary Jo Siegel, a 45-year-old mother from Pacific Palisades, CA, also opted against conventional treatment. She was close to undergoing a bone marrow transplant at th Dana-Farber Cancer Institute in Boston when she visited Dr. Burzynski's office and changed her mind. She has been in remission from non--Hodgkin's lymphoma for two years since completing his therapy. Says Siegel, " I thank God every day that I had time to at least try it. " You wouldn't guess from looking at Dr. Burzynski that he could incite so much controvery. His lab coat bears a motto taken from the Hippocratic oath that translates, " First, do no harm. " A solid, small man with beady eyes, he's hardly a commanding presence. His bushy mustache hides his upper lip and makes it difficult to understand his heavily accented monotone voice. In his waiting room, he displays a photograph of himself and his wife with Pope John Paul II. But he also makes known his feelings about the establishment, with a poster of Albert Einstein that reads, " Great spirits have always met with violent opposition from mediocre minds. " In Dr. Burzynski's war against the medical mainsteam, this room has become command central. Waiting for appointments, patients from all corners of the country swap anecdotes that spread like brushfires. They are comrades, survivors not only against the odds, but also against a system that doesn't give them the answers they want to hear. It's difficult not to get swept up in their enthusiasm. Mark O'Neal Speight, M.D., a family practitioner in Charlotte, NC, who brought his 64-year-old mother to Houston for antineoplaston treatment, was moved by the people he met. " With the exception of only one person who was just getting started, the half-dozen people in that waiting room were better, " says Dr. Speight. " One guy had lung cancer and it was completely gone. He'd done nothing but undergone treatment with Dr. Burzynski's medicine -- no chemotherapy, no radiation, no surgery. You see people like that, and you just have to pay attention. " Dr. Speight's mother had brain-stem glioblastoma multiforme; radiation treatments failed to slow it. Within eight weeks of anti-neoplaston treatment, however, the tumor had decreased in size by 20 percent. Because of complications, the dosage had to be decreased and the tumor grew back. In May, she died of complications, but Dr. Speight feels the $10,000 spent on the four-month treatment was well worth it, since his mother lived nine months longer than her doctors first predicts. Dr. Speight had brought hs mother to Houston on the advice of Portland, OR, actuary Bob Maver, who had made more than a dozen site visits to confirm the long-term remissions patients claimed. Dr. Burzynski's own studies weren't formal enough to satisfy Maver's need for statistical certainty, but he lobbied the National Cancer Institute (NCI) to examine them further. " If these kind of results ever happened out of Memorial Sloan-Kettering, it would be plastered all over the front page, " says Maver. The NCI reviewed seven of Dr. Burzynski's case studies and launched its own antineoplaston trials, starting in 1993, at Memorial Sloan-Kettering and the Mayo Clinic. But because Dr. Burzynski, who provides the antineoplastons, squabbled so much over the protocol governing patients, the trials came to a halt in August 1995, before any conclusions could be drawn. Former NCI researcher Dvorit Samid, Ph.D., has also been studying a compound called phenylacetate, which is a main ingredient in one of the antineoplaston preparations Dr. Burzynski uses. Dr. Samid, now an associate professor of Medicine at the University of Virginia in Charlottesville, is optimistic. In Phase I trials, she says " activity was seen in conditions that had none of the classical side effects of toxic therapy. " But Phase I trials are meant to determine only whether a drug is toxic; not whether it works. Although it's too early to evaluate her Phase II and Phase III results, which would answer that question, Dr. Samid maintains, " the drug deserves attention. " Dr. Burzynski also conducts his won clinical trials, but they're not associated with the NCI; and although they're periodically audited by the FDA, they are not, in a strinct sense, supervised. For years, he has tried unsuccessfully to get FDA approval for his drugs. Greed may be part of the problem. Dr. Burzynski has patents on antineoplastons that make them too expensive to interest drug companies. Although he says his clinic barely makes ends meet, he seems to be thriving personally: He drives a Lexus and frequents posh restaurants. That could change at any time. In February 1995, he almost lost his Texas medical license. A busload of supporters, including a half-dozen patients with IV bags in their fanny packs, filled a courtroom last February at his appeal. Television crews were there to record the drama. His case had dragged on for years, but within 15 minutes of the finished arguments, the judge declared the Texas State Medical Board of Medical Examiners had been " arbitrary and capricious " in its action against him. The gasp in the courtroom was audible; all of Dr. Burzynski's patients stood up, applauded, and cried. But just days later, the FDA and U.S. postal officials raided his Houston clinic for evidence that he had shipped his medicines illegally across state lines. The grand-jury investigation is ongoing, with records of dozens of patients seized and subpoenas issued to several patients, employees, pharmaceutical companies, and even authors of books that mention Dr. Burzynski. It is the fourth time he has been investigated by a grand jury; to date, no indictments have been made. He insists he's done nothing wrong. " I don't understand what I'm doing, " he says. " My discovery will save millions of people once it's accepted. It will turn medicine upside down. " Meanwhile, a whole new world of therapies is working its way through mainsteam research. The NCI has more than 160 drugs in clinical trials and is almost as desperate as patients for non-toxic treatments. But the sad fact is, cancer researchers simply can't work fast enough for patients already looking at a drained hourglass. Indeed, in what may prove to be Dr. Burzynski's best hope yet for respectability, a House of Representatives' committee is investigating FDA abuses, including its slowness to give approval to potentially lifesaving treatments, using antineoplastons as a central example. WHETHER ANTINEOPLASTONS OR SOMETHING ELSE is saving some of Dr. Burzynski's patients is still impossible to say. Lorraine Stude is a woman of strong faith, but she is certain that the drugs, not miracles, are the reasons she is still alive. Indeed, many of Dr. Burzynski's most ardent supporters are mothers who are desperate to survive to raise their children. Could this motivation play some part in affecting cures? Pamela Winningham can barely contain her excitement over her daughter's basketball victories and dean's list honors. " When I was diagnosed with the tumor, she was in second grade. Now she's fifteen! " She says. McDonald's early goal was to see her daughter grow up; now its to see her children grow up. Thanks to Dr. Burzynski, she says, she may get to do just that. ----------------- ---------------------- Zol Consultants, Inc. December 14, 1995 Saul Green, Ph.D. President, Zol Consultants, Inc. 340 West 57th Street, Suite 8J New York, NY 10019 (212) 957-8029 Alan M. Waxenberg Publisher Good Housekeeping Magazine 959 Eighth Avenue New York, NY 10019 Dear Mr. Waxenberg, I am writing to express my outrage at the article " Desperate Measures " that was published in the January 1996 issue of Good Housekeeping. The author of the article, a Ms. Glentzer, contacted me several months ago asking for an interview on the subject of Stanislaw Burzynski and his antineoplaston treatment for cancer when she learned that I had published on the subject and had a complete factual understanding of the validity of the claims made for this treatment. I asked if her intent was to present an objective account of the situation or to promote Burzynski's treatment. I told her I wanted no part of it if it was intended to be a promotion because, in my view, all of the quackery miracles we see in the U.S. today are a result of the tear-provoking tales of medical miracles that fill our magazines and TV screen. Ms. Glentzer assured me that she only wanted to present the whole truth and I believed her. I answered all of her questions and gave her all the information I had on Burzynski's credentials, theories, published proofs. I also gave her my evalution of the scientific validity of his claims. Mr. Waxenberg, you have only to read the article to recognize that Glentzer's intent was anything but to tell the whole story about Burzynski's treatment. Instead of presenting the facts she had, she focused on the anecdotes of medical miracles. She made no effort to speak to the patients doctors, the families of patients who died miserably as a result of the treatment or patients who suffered because they believed the media hype about Burzynski and opted to forego effective treatment. I don't usualy write letters like this because I know they are quickly disposed of in the " round file " under the desk. But the guranteed consequence of this article has me greatly disturbed, for I know it will produce a new flood of scared, desperate patients, who can ill afford it, to rush to his clinic, seeking the miracle cures Glentzer wrote about. When that happens, the responsbility will rest entirely on your shoulders as well as on those of Ellen Levine and Diane Salvatore because you could have stopped it and you didn't. Saul Green, Ph.D. CC: William Jarvis, NCAHF Elizabeth Whelan, Sc. D, M.P.H., American Council On Science and Health Davis Kessler, M.D., Commissioner, FDA Victor Herbert, M.D., J.D., Mt. Sinai School of Medicine Steven Barrett, M.D. ----------------- ---------------------- Good Housekeeping December 26, 1995 Good Housekeeping 959 Eighth Avenue Gettingwell- / Vitamins, Herbs, Aminos, etc. To , e-mail to: Gettingwell- Or, go to our group site: Gettingwell SBC DSL - Now only $29.95 per month! Quote Link to comment Share on other sites More sharing options...
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