Surviving "Terminal" Cancer: Clinical Trials, Drug Cocktails, and Other Treatments Your Oncologist Won't Tell You About Paperback – June 2, 2002

The Gold Standard treatment for Glioblastoma Multiforme (GBM) brain tumors is a combination of surgery, radiation and the chemotherapy themozolomide (Temodar / Temodal).Untreated, GBM uniformly kills its victims within four months.For 10% of all patients treated with radiation, that survival expectation increases to two years. At four years, 3% of the original group will still be alive.Add Temodar and surgery to that radiation, and 27% of those treated can expect to survive to two years. At four years, 12% of those treated with the Gold Standard combination will still be alive.University study press releases cheer the dramatic increase in surivival rates for patients receiving Tamodar along with radiation and surgery. From 10% to 27% for two years and from 3% to 12% for four years are big jumps.While the numbers do represent a significant increase, the fact remains that at four years, 88% of those receiving the Gold Standard treatment for Glioblastoma Multiforme tumors will be dead.In 1995, before Temodar was anywhere near the marketplace, Dr. Ben Williams discovered that he had a large Glioblastoma Multiforme tumor. Williams looked at the survival rates for those receiving the recommended treatment and did not like the odds.A research scientist and academic, Williams scoured every resource to create a state-of-the-art Glioblastoma Multiforme protocol. He received all of the standard treatment, which he supplemented with six other anti-cancer, pro-immune agents (and aspirin for the side effects).Williams combined the prescribed treatment:* Surgery (which left mass behind)* Radiation* BCNU chemotherapy* PCV chemotherapyWith these addition of these agents:* Tamoxifen* Verapamil* Accutane* Melatonin* Mushroom extract* Gamma Linolenic Acid* AspirinThe treatment the oncologist recommended was certain to result in Williams' death. Yet the doctor refused any treatment outside the standard protocol, for fear of doing harm.Williams believed that nothing was more harmful than death. The oncologist only budged a little. He gave Williams some Tamoxifen. Everything else Williams took to reduce his tumor - including a higher dose of Tamoxifen than the oncologist would prescribe -- he researched and obtained on his own.A 1995 Gold Standard for GBM tumor treatment did not exist. The oncologist offered surgery, radiation and chemotherapy. The difference between 1995 and 2007 is the accuracy of the radiation and the quality of the chemotherapy.At two years from diagnosis - when 92% of patients receiving standard treatment would be dead - Williams received the first of what is now 12 years of clean MRIs.Williams regards his low-toxicity drug cocktail as a synergistic weapon against glioblastoma multiforme. He compares the current Gold Standard GBM treatment to the AZT AIDS treatment. Although AZT worked at first, the body developed a resistance to it. No more HIV patients were alive at four years on AZT than off of it.GBM cancer cells also adapt to chemotherapy. They're not adept at adapting to the low-toxicity cocktail Williams invented. The Accutane prevented the cancer cells from consuming the cells nearby. The Tamoxifen slowed the cancer cells' ability to extrude out the chemotherapy. The Gamma-Linolenic Acid produced free radicals inside the tumor, killing it from the inside out.As a rule, oncologists do not offer these treatments to brain tumor patients. These treatments are not "proven." If the FDA (Food and Drug Administration) has not blessed the substance then the doctor will not prescribe it, even if the doctor's treatment itself means almost certain death.Doctors know, says Williams, that their patients will die. So what is the problem prescribing low-toxicity agents that might cure brain tumors?Going outside the system can have a dramatically negative affect on a doctor's career. He might be accused of fraud, profiteering or incompetence. In a profession based on the credo "First, do no harm," doctors would first like to do no harm to their own careers.Doctors find themselves trapped between the FDA and the medical self-policing infra-structure on the one hand, and certain death for their patients on the other.Doctors won't prescribe the cocktail agents Williams took because they are not "proven" according to FDA standards. The approval process requires billions of dollars. Pharmaceutical companies won't research drugs that will not be economically viable. The drug must be exclusive to the pharmaceutical company. The population requiring the drug must be large enough to expect a return on investment.Many of the agents Williams used to cure his cancer are not patentable. Competitors would be able to copy and sell the compound. About 12,000 people a year are diagnosed with glioblastoma multiforme tumors. The market is not large enough to justify very expensive scientific trials.Beaten down by disease, radiation and chemotherapy, few GBM patients have the energy to climb the hurdles to promising but not "proven" treatments. Even when the outcome is certain death patients who ask for more will not receive it. Just as AIDS patients created political pressure to get "unproven" treatments for HIV, Williams encourages GBM patients to insist on access to "unproven" treatments for GBM.Dispensing only "proven" treatment is legal, says Williams. But denying dying patients access to substances that could save their lives is grossly unethical. Already fighting the deadliest of brain tumors, patients should not have to fight for promising but "unproven" cures. Until the political pressure on the FDA reaches a critical mass, he says, the GBM Gold Standard Treatment will still produce a four year death rate of 88%.[...]

A critical perspective of the cancer industry from a very intelligent patient. Good for thought of you ever have to deal with cancer.

I found this book inspirational. Not because the author beat the odds in surviving a cancer considered "terminal" by all of his physicians, but because he did it by rationally setting out to explore all of his options and did not just let the "experts" tell him what to do.The most important lesson from this book for those of us exploring cancer/tumor treatment options is that we have to research beyond what we are likely to hear from our medical specialists. Each of them will have their particular bias (e.g., surgeons tend to want to cut things out, oncologists will tend towards other strategies).Moreover, as the author points out, the range of treatments the medical specialists are willing to recommend are sharply limited by custom to things that have passed the FDA-mandated stage III clinical trials. Many very promising treatments have only passed stage II trials; and because of cost, never go beyond that. Nor do medical specialists in the U.S. look at successful treatments that are well-accepted by the medical specialists in other countries.And while this book does discuss "alternative" medicine, that is not the focus. The author does evaluate some "alternative" medical approaches, debunking several of them but also notes where medical science has validated some of them.Another critical point the author makes is that treating cancer should be like treating AIDs. Because of the probabilistic nature of any single treatment successfully eradicating a cancer, a "cocktail-style" drug regiment has the best chance of succeeding. He makes a powerful and convincing argument that this one change in approach could make a huge difference in reducing the recurrence of cancer and boosting the effectiveness of current treatments.One more key insight of the author: the large pharmaceutical companies have no financial incentive to pursue promising cancer treatments that they can not patent and thereby recoup their multi-billion dollar investment. Because of that, the author believes many promising treatments are not fully explored. He is sharply critical of government policies that have not closed this gap.CFC