Ben W - Diagnosed 1995 with GBM IV
At the age of 50, I had surgery for a glioblastoma brain Tumor on March 31, 1995, after an MRI in the emergency room the preceding day. The tumor was located in my right parietal cortex and was very large (approximately 180 cc, and described as the "size of a large orange").My neurosurgeon later told me that I would have been dead within two weeks had I not had the surgery when I did. My MRI three days after surgery showed that the substantial mass effect had been eliminated, but there still was a great deal of enhancement indicating substantial residual tumor. I then received standard radiation treatment of 55-60 Gy, supposedly covering 2 cm beyond the tumor's boundary. My next MRI after the 33 days of radiation treatment showed about the same amount of enhancement as was present just after surgery. In other words, it was not evident that radiation did me any good, although presumably it stopped the tumor from growing for at least some period of time.
During the first two months after my diagnosis I spent many hours on the internet and in our medical school library, learning all that I could about possible treatment options. While I initially entertained boron neutron capture therapy, gene therapy, and radiation-loaded monoclonal antibodies as much more promising than conventional treatment, I finally rejected all of these based on likely problems of various sorts. I therefore opted for conventional Chemotherapy but in combination with other agents that seemed likely to improve the effectiveness of chemotherapy over that which typically occurs. In June of 1995 I received my first round of BCNU chemotherapy. Two weeks prior to the BCNU, I began taking 220 mg of tamoxifen daily, which I continued until March of 1998. For the week surrounding the BCNU, I also took 600 mg per day of verapamil, a calcium channel blocker used for blood pressure treatment, which laboratory research indicates might substantially enhance the effectiveness of the chemotherapy. That was also my initial motivation for taking the tamoxifen, although my research had indicated that it could be effective against the tumor in its own right. I had no side effects of the BCNU, except for some venous irritation that caused the eventual collapse of the veins in which it was administered. Zofran completely prevented any Nausea or vomiting. My blood counts were relatively unaffected. My next MRI a month after having the BCNU showed a noticeable reduction in the amount of enhancing tumor, although a great deal still remained.
In July I added to my drug regimen 160 mg/day of Accutane (13-cis retinoic acid), on a two week-on 1-week off schedule, which I then continued until December of 1995. For my second round of chemotherapy in August I switched to the PCV treatment, while continuing to take the verapamil during the week surrounding the CCNU, and the tamoxifen and Accutane throughout the entire cycle. At this time I also added 15 mg/day of melatonin, which I continued to take for the next five years. My second post-chemo MRI showed a very substantial reduction in the amount of enhancing tumor, so I continued on the PCV for my third round of chemotherapy The result was still greater reduction in enhancing tumor, with some parts of the enhancing area almost completely gone. For my fourth round of chemotherapy I switched back to the BCNU, primarily because the procarbazine component of the PCV was causing me persistent stomach pain and the vincristine component was causing neuropathy of various sorts (my big toes are still numb to the touch). I was also led to believe that PCV was harder on my white-cell counts than the BCNU. That did not turn out to be the case, because 2-3 weeks after the BCNU my white-cell counts dropped into the "severely neutropenic" category. Fortunately I did not develop any problems from this. But as a result I delayed the next round of BCNU for a few weeks until I had some substantial recovery. The MRI after this fourth round of chemotherapy was free of any sign of tumor. My fifth round of chemotherapy was also BCNU and again I had a clean MRI following it. For my sixth and final round of chemotherapy I switched back to the PCV, but with a smaller dose of the vincristine, because the BCNU had begun to cause me pulmonary distress, which I knew could be quite serious if allowed to continue.
All of my MRI's since chemotherapy have been free of any sign of tumor. Throughout my first year of treatment I added various nutritional supplements that can be obtained at most health food stores. These have included genistein ( derived from soybeans), PSK ( a mushroom extract originally developed in Japan), flax seed oil (for the fatty acids DHA and EPA), borage seed oil (for gamma-linolenic acid), selenium, and green tea extract. All of these have been shown to have some degree of effectiveness against at least some forms of Cancer. I also began paying much more attention to my diet, by eating large quantities of broccoli sprouts, garlic, raspberries and blueberries, onions, and soy products. Most recently I also added a supplement called silymarin., an extract of milk thistle
The inspiration for the various treatments and health-food commodities I have opted for has come from many different sources. Much of it came from my own research on Medline, sometimes after hearing about a treatment in passing from participants in the Braintmr group (Accutane was one example of this). Often I would follow up on this research by contacting the investigators themselves, either by phone or e-mail. Invariably they were very helpful. I also found Al Musella's web page useful as a source of leads to follow up, although I unfortunately did not discover it until after my course of treatment was pretty well settled.
My treatment philosophy throughout this ordeal has been very similar to the treatment approach that has developed for AIDS. Both HIV and cancer involve biological entities that mutate at high rates, so that unless a treatment is almost instantaneously effective, the dynamics of evolution will create new forms that are resistant to whatever the treatment may be. However, if several different treatments are used simultaneously (instead of sequentially, which is typically the case), any given mutation has a much smaller chance of being successful.
A second feature of my treatment philosophy is that any successful treatment will need to be systemic in nature, since it is impossible to identify all of the extensions of the tumor into normal tissue. The implication of this for me was that I had to make chemotherapy work, which is why I added both the verapamil and tamoxifen. Now many options in addition to chemotherapy are available. I have posted a summary of the evidence concerning the various types of treatments. Click HERE to read it.
No one afflicted with a glioblastoma can be considered lucky. But there are degrees of bad luck, and in that comparative context I have been extremely lucky. Despite an enormous amount of brain damage, I have never been seriously impaired, and have been able to lead a relatively normal life. The first year after surgery I did have some significant memory problems, and the undergraduates that I teach (I am a Professor of Psychology at the University of California, San Diego) had to suffer as a result. My suspicion has been that this was due primarily to the radiation I received. Regardless of the reason, these deficits have largely disappeared over the years. My only real complaints at this point, other than living under the dark cloud of a possible recurrence, is that I have been unable to regain my previous level of physical conditioning and that I frequently need afternoon naps because of mental fatigue. But these problems are minor compared to those experienced by others. Despite the ordeal I have endured, I perhaps perversely now look back on my time as a brain cancer patient in a positive light, and have recently completed a book about my personal experience and what it has taught me about how to cope with our medical system. My hope is that this will help other victims of brain cancer to cope more successfully with their diagnosis. The book's title is `Surviving "Terminal" Cancer: Clinical Trials, Drug Cocktails, and Other Treatments Your Doctor Won't Tell You About`. It can be ordered from Amazon.co.uk, or can be ordered directly through the publisher:
2450 Riverside Ave.
Minneapolis, MN 55454
www.fairviewpress.org Fairview Press
Update: 9/5/2004I am now into my tenth year since my diagnosis and over eight years since my first clean MRI. Not much has changed for the past seven years. I continue to have some mild Cognitive impairment, consisting mainly of difficulty in concentrating, and becoming mentally fatigued much more quickly than before my diagnosis. My physical health is generally good, although my MRIs continue to show a considerable amount of radiation damage to my brain, which fortunately appears not to be worsening. I lead a relatively normal life, and continue to work full time. While I no longer receive any conventional treatment, I do take a large number of supplements, based on the nutritional research that I continue to do. I also continue to read the neuro-oncology literature, and assemble that information in the annual update of my summary of treatment options.
Update: 8/28/2006Ben is doing well and just posted a new version of his article: "Treatment Options For Glioblastomas". Click HERE to read it!
Nothing significant has changed since my last update in 2006. My health is generally good and I rarely worry about the possibility of a recurrence, now over 13 years past my diagnosis. In fact, I have not had an MRI for more than two years.