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Surviving Terminal Cancer: Clinical Trials, Drug Cocktails, and Other Treatments Your Oncologist Won't Tell You About

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A terminal cancer diagnosis is a shove through the looking glass into a terrifying alternate reality of imminent death, where medical science has no answers and clinical trials and alternative medicine offer fleeting glimpses of real or perceived hope. This is the experience of millions of people every year, who find they suddenly must trust doctors they have never met to make the best choices for them according to principals of science and the Hippocratic Oath. Seven years ago, Ben Williams heard perhaps the worst of all such diagnoses, Glioblastoma Multiforme. This fast-moving brain cancer carries a devastating prognosis where survival is measured in weeks and where approved treatments add only a few weeks more. In his battle with this ferocious disease, he left the established path to fight on his own terms, mixing conventional, experimental, and alternative medicine. His eventual recovery, and the lessons he learned, are the basis for this book.

'Surviving Terminal Cancer' is written in three sections. Section I is a narrative of the onset, diagnosis, treatment, and eventual remission of the author's own terminal disease. This section includes the bizarre initial symptoms of his brain tumor, and the emotional upheaval of the diagnosis and devastating prognosis. During the treatment course, Williams must struggle with a medical system that denies him obvious treatments; he confronts his doctors and travels to Mexico to obtain the drugs they refuse to prescribe. His treatment plan is a drug cocktail synthesized from his research into clinical trials and other published experimentation. A brain tumor proves intriguing subject matter, as fascinating as it is horrifying, and this creates a charged backdrop for the section's already interesting storyline. It is an MRI-to-MRI clinical suspense thriller, superimposed onto a very human drama of husband and wife coping with fear and mortality. Ultimately, Williams survives this Nietzschen transformation to complete the book. The resulting Section II delivers a scathing, if constructive, criticism of the American medical system and the FDA. Although well-meaning, this section may disturb many readers as it addresses the basic assumption of trust between doctor and patient. Williams pulls no punches, arguing against the statistical methods mandated by the FDA, the funding and motives behind drug trials, and even the present interpretation of the Hippocratic Oath. He turns the very notion of conservative, scientific medicine on its ear as fundamentally unscientific and irrational. With chapters like 'Bastille Day for Cancer Patients,' Williams handles this subject as brazenly as his self-medicated treatment plan in Section I. The theme of a deeply broken system culminates with a call for cancer patients to fix it themselves through direct political action. Section III is a useful summary of alternative medicine, supplements, and clinical trials, and how to effectively research all such options for any particular disease. Although there are a few specific options listed, this section is not a definitive dictionary of treatments. Rather, it is a discussion on how to effectively investigate potential treatments both within and outside of traditional medicine. Through a few carefully picked examples, he illustrates how to find and identify useful information and separate it from advertising and political rhetoric.

Despite the complexity of much of the subject matter, the style is a well-explained, easy to follow prose. Williams uses AIDS as a useful point of epidemiological reference, comparing cancer to HIV on both microbiological and socio-political levels. Perhaps welcoming the inevitable criticism, he carefully includes supporting references at the end of every chapter. Locating these supporting articles in many cases leads to very interesting, and applicable, secondary reading. Williams is even-handed in his treatment of the facts, carefully addressing several perilous topics that could easily have degraded into sour grapes. He carefully draws a distinction between doctors as individuals, for whom he holds obvious respect, and a troubled medical system as a whole. Perhaps most importantly, Williams, a Harvard-educated scientist, does not fall into the trap of arguing 'alternative versus traditional' medicine. Instead, he takes traditional, alternative, and experimental medicine, as well as some of their related, rhetorical arguments, and examines them together under uniform scientific scrutiny.

The concepts in section II are universal in their appeal, but the book as a whole best serves those presently facing cancer or similar deadly conditions. Williams' work is a departure from earlier (and excellent) inspirational works by Armstrong and others, in that it provides the reader specific detail on how to use the basic principals of science and statistics to wage war against their disease. Williams is far too sophisticated to simply preach a particular treatment regimen because it worked for him. He does not promise a cure or offer unreasonable hope. What he does deliver is the means for patients to understand their situation and fight for their own survival, exploring the statistical fringes of their condition to come up with the additional few percentage points that might determine life or death. It is controversial, alarming, and blunt. It is also an excellent book -- required reading for anyone facing a deadly disease.

I found this book to contain the most comprehensive, informatative compilation of facts about brain tumors that has been written to date. Ben Williams not only has tirelessly researched this subject, but he has LIVED this first-hand. This gives him an insight that is unsurpassed in it's ability to convey this information. I have been reading everything possible for over two years about brain tumors and treatments, ever since my brother was diagnosed with the same type tumor as Ben's. Ben has really taken his professional abilities as a medical researcher and applied it to the area of cancer treatment, the medical issues involved with treatments, clinical trials, and all the related factors. This book is a must for anyone that knows someone that is battling cancer....not just brain cancer, but due to Ben's insightful treatment of the relevant issues, anyone that is facing a life-threatening diagnosis should read this book. It explains the "whys" of how our medical system works, and doesn't work. It will give you the power to be able to ask the "right" questions. I highly recommend this book to anyone seeking answers and hope facing a terminal diagnosis.

This book tells a dramatic story of a battle for survival against a dread disease, and also offers a useful guide for cancer patients determined to try to beat the odds. On top of that, the author delivers a scathing critique of the conventional approach to treatment of life-threatening illness in the US. The book starts off with the author's story: a psychology professor at the University of California, Williams was diagnosed with an aggressive and incurable brain tumor (glioblastoma). Refusing to accept his imminent demise, he launched an unconventional (but nonetheless science-based) fight for survival. Searching the biomedical literature, he was surprised to uncover many studies describing relatively nontoxic compounds -- some of them drugs approved for other purposes - which seemed to show at least modest tumor-fighting effects (based on preliminary data, often involving animal models). By traveling to Mexico and other means, Williams was able to put together a cocktail of such compounds that he took on top of the conventional treatments (which normally achieve at most a minor and transient effect with glioblastoma). MRIs showed the tumor at first shrinking and then disappearing completely, and Williams has had no recurrence in more than five years. The book describes Williams' cocktail, which may be of use to other patients with similar brain tumors. Of equal value, however, is the general approach described in the book, which could be adapted to fight other kinds of cancer as well. The basic idea seems almost obvious: when conventional treatments are unlikely to succeed, combine everything that is reasonably nontoxic and seems (based on however preliminary data) to have a decent chance of some efficacy. Any intelligent person can see the good sense in this (if you are going to die anyway, why on earth would you NOT want to try any nontoxic treatment that has some chance of helping?), but Williams describes the stubbornly hostile reaction of oncologists to his approach. He describes how academic physicians prefer to corral patients into unimaginative trials of single-agent therapies for which even the doctors themselves entertain little optimism (except perhaps for the publication they hope to add to their CV). Experience with AIDS and the few kinds of cancer now considered curable suggests that dramatic results usually occur only when multiple agents are combined to obtain a synergistic effect. Yet the oncology profession sees it as somehow more "scientific" to test drugs in isolation (or occasionally to combine two agents only after each has been thoroughly tested by itself). The book harshly criticizes the role the FDA has played in promoting this approach, which may be rational for ulcer or arthritis therapy but is obviously inappropriate for the therapy of terminal diseases. In summary, this book combines three ingredients in a unique way: a personal survival story, a roadmap, and a devastating intellectual critique of the status quo in cancer treatment. Well written and thoughtful, this book should be of great value to many readers, including those struggling with cancer.

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 chemotherapy

With these addition of these agents:
* Tamoxifen
* Verapamil
* Accutane
* Melatonin
* Mushroom extract
* Gamma Linolenic Acid
* Aspirin

The 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%.


[...]

After I was diagnosed with a high grade brain tumor I read as much as I could to learn what I was up against. Ben Williams' book is by far the best that I found. As a glioma patient and Harvard trained research scientist who peer reviews articles for academic journals, he turned a critical eye to conventional and alternative treatments that could save his life. Dr. Williams cogently argues that cancer patients should understand all of their treatment options and not passively accept the standard treatments offered by their oncologists. Many treatments that have been effective in phase II trials or in successful use overseas are not offered because the FDA requires expensive phase III trials. Brain tumor patients do not have time to wait for conclusive research, and must balance the risk of new treatments with the lethality of their disease. Also, treatments that work for some patients do not for others, and patients may not have time to try them one by one. Many treatments are partially effective, but leave enough resistant tumor cells to allow for more deadly recurrences. For these reasons, Ben Williams believes that a "cocktail" of several treatments in parallel offer a better chance of longterm survival than a serial approach. I gave a copy of this book to my neuro oncologist, and he read it overnight. He disagrees with many of William's suggestions, but acknowledges that some of his colleagues favor them. He also agrees that the book is very well written and researched. I heard a neuro oncologist strongly endorse this book at a meeting of the American Brain Tumor Association in July 2005. Because Williams is a long term survivor, there are new treatment options not covered in his book. He updates these on his website, http://virtualtrials.com/pdf/williams2005.pdf. If you or a loved one has been diagnosed with a brain tumor, buy this book. I am getting clear MRI scans, and with luck and knowledge, you can too.

This book was written by Dr. Williams, an eminent and widely published experimental psychologist in the field of learning theory and many other related fields. Dr. Williams was diagnosed in 1995 with a glioblastoma with, for all practical purposes, zero chance of survival. He immediately went on a quest for maximizing his chances of survival by evaluating and combining traditional and nontraditional treatment approaches. Today, in 2007, he is alive and well. This book should be of interest for anyone, even if not affected by cancer personally. I found it a remarkable account of how one can deal with catastrophic diagnoses and seemingly hopeless situations. It also critiques current FDA policies and conventional medical practice by providing a wealth of facts, literature citations, and well-developed logical arguments. There is also a very readable discussion of the statistical approach, written for a lay audience, of experimental design, and of implications for the methods for the social and medical/biological sciences. This book includes a systematic, open, thoughtful, and fair evaluation of so-called alternative treatments. The evaluation of these alternative treatments is so convincing because it was undertaken by someone like Dr. Williams, who knows the scientific approach so well. I call this book "inspirational" for anyone who has to tackle important life-and-death decisions.

I bought this book when my dad was diagnosed with Glioblastoma Multiforme (GBM) in late 2005. At first I was skeptical of his harsh criticism of the medical institution as a whole, but as my dad's surgery, chemo and radiation went on, I realized how 100% RIGHT ON Dr. Williams is in this book. You MUST buy this if you know someone suffering from this agressive form of brain cancer. Our family purchased three copies so each of us could have their own for reference. If you don't buy any other book about GBM, buy this one. Dr. Williams has survived ELEVEN years from diagnosis with a type of brain cancer that has an average survival time of 14 months.

The previous 5-star reviews of this book are right on target, so I mainly just want to echo their praise for this book (in addition to thanking these reviewers for steering me towards this book).

Ben Williams is a true hero for those with brain tumors, and to a large extent other cancers also. Drawing on both his own experience and his extensive review of the literature, he outlines the potentials and serious limitations of conventional medicine, while also informing readers of the vital importance of complementary medicine, especially "off-label" drugs and nutritional supplements.

He advocates a "cocktail" treatment approach which combines many agents, both conventional and unconventional, to simultaneously target multiple cancer mechanisms. This approach is gradually becoming accepted as the best approach, although this is happening far too slowly because of the many problems with how conventional medicine is organized. As a result, you are likely to encounter resistance from your doctors, and perhaps even family members, so be prepared to be very persistent.

If you or someone you care about has been diagnosed with GBM or another type of brain tumor, this should be the first book you read, and you should do so as quickly as your circumstances allow. However, even before you do that, be sure to read Ben's annual update entitled "Treatment Options for Glioblastoma and other Gliomas," which is available online at no cost at the Virtual Trials website.

Also be sure to look up the related and valuable work of Jeanne Wallace (see her Nutritional Solutions website) and John Boik (see the Oregon Medical Press website). Also have a look at my "Brain Tumor Treatments" website (`brain-treatments.net`).

Good luck and best wishes!

For everyone having to go through dealing with cancer and family members looking for answers, this book will open your eyes. It gives you a wealth of information, directs how to obtain more info, teaches you impowerment and gives you hope and focus on a future. This is extremely important for those diagnosised with Glioblastoma multiforme grade IV.

Dr. Ben Williams is an excellent writer who provides a rare opportunity for readers to learn about his "terminal" cancer through a scientist's eyes. In short, he has already survived and thrived over 15 years after he received a diagnosis of a disease that was supposed to lead to a rapid trip to the undertaker. In part one, he shares a very personal view of his own round-trip to Hades. His wry sense of humor makes it enjoyable, even though we share his painful experiences in the hands of some physicians who are not going to win awards for bed side manners. Patients and their loved ones can be torn apart by the healing art of medicine that was meant to cure them, but Dr. Williams kept his dignity and his wits about him, allowing his survival. In part two, Dr. Williams explains why the medical system needs reform. This is an excellent review of some of the basic flaws of scientific medicine. Physicians be warned, Dr. Williams is an iconoclast with a razer sharp mind and first rate scientific credentials, even after being kicked in the head with a near fatal brain tumor. Many physicians who have not had the benefit of an inductive scientific approach may be surprised to learn new ways of examining data. Third, Dr. Williams shares information that your oncologist won't tell you, including alternative medicine, supplements, cutting edge treatments and sources of information. Throughout the book the layman is provided with helpful guidance that will enable the patient and his/her caretakers to make their own choices. The book is also important because Ben was a very patient mentor to me when I was an undergraduate studying experimental psychology at the University of California, San Diego, some 33 years ago. I have the greatest respect for him as a leading scientist and a teacher; and now I have an even more profound respect for him as a tough fighter, and a leader who used his scientific prowess to save his own life, and who then wrote about it to help save others. My bias in favor of Ben aside, this important book will probably change the way cancer is dealt with politically, clinically and scientifically. It is an inspiration to all of us because it shows that what makes the human brain truly amazing is its ability to not only recover function, but to actually improve itself as a result of trauma. They say, "Physician, heal thyself". Dr. Williams not only talks the talk, he walks the walk. Bravo!