QUOTES FROM BEN'S BOOK: "Surviving Terminal Cancer"

-- "Oncology ignores the critical distinction between diseases for which effective treatments exist and those for which effective treatments are lacking.  In the latter case, the practice of prescribing standard treatments that have a known record of failure is simply foolish." - pg.4

-- "Perhaps the most important lesson I have to offer is that prevailing medical practice constrains access to treatments that have a good chance of providing significant clinical benefits.  Some of these options come from alternative medicine, which is typically scorned by conventional physicians.  Others come from cutting-edge treatments, which patients often do not learn about until several years into the treatments' development--years that many cancer patients do not have." -pg.3

-- "In the meantime, conventional medicine has its limits, and cancer patients need to explore treatment options not yet incorporated into conventional medical practice.  Patients must be willing to go beyond their physicians' advice, and sometimes follow options contrary to that advice.  This is not an easy road to travel.  Newly diagnosed patients are confronted with a disease about which they are largely ignorant.  For better or for worse, they often are at the mercy of their physicians.  Some physicians will actively resist any approach to treatment other than their own, even when they concede that their treatment offers little promise.  Therefore, patients need to learn how to acquire medical information on their own while exploiting their physicians' knowledge and expertise.  To do both simultaneously requires considerable patience, social skill, and effort." -  pg.2 

 -- "As I will discuss in later chapters, many treatments are unavailable because the U.S. government, via the FDA, has adopted a policy that rigidly divides treatments into "proven" and " unproven" categories based on a certification process of questionable validity.  When the standard "proven" treatments fail, terminally ill patients are denied access to promising alternatives because these treatments have not yet received FDA approval."  - pg.4

-- "Dr. Victor Levin, head of the brain tumor center at M.D. Anderson and perhaps the leading neuro-oncologist in the country, replied that he was generally skeptical about the evidence supporting the efficacy of such agents.  He then mentioned that his group had been using another relatively nontoxic agent, Accutane, which was normally prescribed for severe acne."  - pg.51

-- "The first was melatonin, the hormone naturally secreted by the pineal gland to control the diurnal cycle.  Well known for its success in treating jet lag.  ... it almost doubled the survival time for patients with many different types of cancer, including glioblastoma.  ... polysaccharide krestin (PSK), a mushroom extract that Japanese physicians have used for ten to fifteen years in the treatment of cancer.  It is believed that PSK provides a general boost to the immune system.  It, too, has been shown nearly to double survival rates in well-controlled clinical trials involving several different kinds of cancer." - pg.54-55

-- "Gamma-linolenic acid is found in several seed oils.  Because it is nontoxic and available in most health-food stores, I decided to add it to primrose oil, but borage seed oil has about twice the concentration." - pg.57

-- "Although physicians have valuable clinical experience, few have the technical expertise of someone trained as a Ph.D. in a scientific discipline." - pg.64

-- "American Society of Clinical Oncology, one of two major national meetings of cancer researchers.  I had read the proceedings of these meetings for several years--they provide the most up-to-date information about ongoing research, which typically does not appear in the professional journals until one to three years later.  For a cancer patient with a lethal diagnosis, this time lag is, quite literally, an eternity." - pg.89

-- "in order for a tumor to grow, its cells must break down the matrix of adjacent normal cells, in essence digesting the cell-matrix to make space for growth.  Because metalloproteinase enzymes are involved in this breakdown, chemicals that inhibit this enzymatic process should be able to hold the cancer proliferation in check.  For a tumor to grow larger than the size of a pinhead, it must recruit tiny blood vessels that provide a blood supply, growth of new blood vessels, preventing access to the blood supply necessary to sustain tumor growth." - pg.90

-- "The current medical system does not provide the best possible treatment for cancer patients, and especially not for those with brain tumors.  In my own case, I would likely be dead if I had followed the advice of my neuro-oncologist. ... I am convinced I would not have survived had I not pursued "unproven" treatments in addition to the standard treatments I received.  Neuro-oncologists routinely oppose the use of "unproven" treatments, an attitude that seriously diminishes their patients' chances of survival." - pg.109

-- "Different treatments have different mechanisms of action, and the laws of probability imply that the more treatments a patient uses, the greater the chances that at least one of them will succeed.  Moreover, even small effects from individual treatments may have a cumulative benefit. Therefore, by combining as many different treatments as possible without creating life-threatening toxicities, patients may improve their chances of survival. ... Despite the high regard I have for physicians who treat cancer patients, the following chapters will be highly critical of the way neuro-oncologists function.  I do not question any physician's personality or competence; instead, I argue that physician training and the way cancer treatment is institutionalized often are not in the patient's best interest.  I also argue that governmental policies reinforce and perpetuate a flawed medical system." - pg.110

-- "For every disease there is a gold standard of treatment that clinical trials have shown to be more effective than other treatments. ... No one can argue against using the scientific method to establish rigorous medical standards.  judgments based on clinical observation measurements, selective attention to cases that confirm one's expectations, and other factors." - pg.111

-- "While clinical trials are sometimes necessary to eliminate mistakes in medical practice, using them as the sole criterion for determining which treatments are available can reduce a patient's chance of survival.  This is especially true when the gold standard of treatment is only minimally successful." - pg.112

-- "Physicians typically will not prescribe a treatment unless it is FDA 

approved. ... The National Cancer Institute sponsors some of these trials, but increasingly the costs are assumed by drug companies hoping to receive FDA approval for their products.  As a result, drugs that are potentially profitable are for more likely to be studied in clinical trials.  An agent that is not patentable or that is already available for purposes other than cancer treatment will almost never become the subject of a phase-III clinical trial, unless the National Cancer Institute sponsors it. ... Many promising agents have not been certified by the clinical trial process and consequently have been ignored as treatment options. ... in the substantial data supporting the efficacy of both melatonin (studied in Italy) and gamma-linolenic acid (tested in India), but ultimately my efforts were fruitless.  I have yet to see a single American oncologist incorporate either of these agents into his or her treatment protocol, despite the fact that neither has any identifiable toxicity to normal cells." - pg.113

-- "The fact that an agent has never been tested in a phase-III trial does not mean it is ineffective.  The economics of drug development are a more powerful determinant of what gets studied than whether there are plausible grounds for believing a given agent might be efficacious. ... The rigid distinction between proven and unproven treatments is a fundamental problem in cancer treatment today.  Lumped together in the "unproven" category are treatments from alternative medicine, treatments developed in other countries, and agents that have been subjected to phase-II clinical trials but have not advanced to phase III.  All of these have the same status as far as conventional medicine is concerned.  Even when a phase-II trial suggests that a treatment may be effective, it often is largely ignored.  ... Oncologists typically will not prescribe unproven treatments outside of clinical trials, and very few will inform their patients about promising results generated in phase-II trials."  - pg.114

-- "Physicians may be aware of extremely promising trials being conducted at other institutions, but they will not volunteer this information because they need patients for their own research." - pg.115

-- "Accutane, thalidomide, gamma-linolenic acid, and other agents are prime candidates for drug cocktails analogous to those that have revolutionized the treatment of AIDS.  By not acknowledging the potential clinical value of these agents, the issue of a cocktail approach to brain tumor treatment is not even broached.  Even when patients express a strong desire to try drug combinations, they are almost always opposed by their oncologists." - pg.117

-- "Oncologists rarely deviate from conventional treatments, even upon a patient's request.  There is no valid scientific basis for this refusal.  The fact is, standard treatments for brain tumor patients are little more than a death sentence.  To refuse access to promising alternatives are legal according to FDA rules, may be in accord with accepted medical practice, but it is a gross violation of any acceptable ethical principle. ... Opposing that choice because the unproven treatments might be harmful to the patient is incredibly presumptuous on the part of the physician, especially when the unproven treatments are shown to be far less toxic than the standard treatments. ... More critical would be the odds of treatment success given the current state of knowledge, and the trade-off between those odds and the risks of undergoing the treatment. ... But now, in the age of the Internet, communications among patients allows access to information about existing clinical trials as well as any preliminary results.  Many physicians are not pleased with this development, because it means the authority of their treatment recommendations will be challenged." - pg.118