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Brain Tumor Survivor: Ben W.

Last Updated: 6/19/16

Click HERE for Bens articles on Treating Glioblasomtas
Ben


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 in the section of this website titled "noteworthy 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.com, or can be ordered directly through the publisher:
Fairview Press
2450 Riverside Ave.
Minneapolis, MN 55454
Toll-Free 1-800-544-8207
Fax: 612.672.4980
www.fairviewpress.org Fairview Press


Update: 9/5/2004


I 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: 8/28/2006


Ben is doing well and just posted a new version of his article: "Treatment Options For Glioblastomas". Click HERE to read it!


Update 9/29/2008

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.


Update 5/14/2009

Nothing significant has changed since my last update! My health is generally good and I rarely worry about the possibility of a recurrence, now over 14 years past my diagnosis. In fact, I have not had an MRI for more than three years.


Update 2/8/2011

Since my last update very little has changed. My last MRI was 18 months ago, and it continues to show no sign of recurrence, but also continues to show considerable damage due to the radiation I had 15 years ago. Whether this means I am primed for early senility is anyone’s guess. To ward off that possibility I continue to take a variety of supplements: genistein (from soy), curcumin (from turmeric), resveratrol (from red grapes, etc. ), silibinin (from milk thistle), green tea extract, and garlic,, along with copious amounts of broccoli sprouts, berries, pomegranate juice, and dark chocolate. I also continue to take melatonin at night, as I have done for 15 years.

The only notable change in my life is that I have now retired, due to wanting to spend more time on brain tumor issues.


Update 2/21/2012

It has now been almost 17 years since my diagnosis. My last MRI was two years ago, and it was unchanged from the previous one, four years prior to that. I have had no evidence of tumor recurrence since January of 1996. My only "treatment" for the past several years has been a number of supplements (nutraceuticals), and I live a relatively normal life.


Update 1/28/2013

During the last six months, I had my first MRI in a couple of years, due to several episodes of dizziness. While the MRI showed no evidence of recurrent tumor, it continues to show considerable damage on the FLAIR image, presumably the effects of radiation.

Otherwise, I continue to do well and live a normal life, now over 17 years after my diagnosis. I continue to take a large number of supplements, but otherwise no other medication for brain cancer. My medical concerns now are more focused on other problems, consistent with the usual effects of getting older.


Update 7/10/2013

I have little to add to previous reports. I have had no evidence of recurrence since my first clean MRI in January, 1996, and have had no pharmacological treatments for many years. Now my only maintenance program is a collection of supplements.


Update 1/25/2014

I have nothing to add to my last update, as nothing has changed in the last six months.


Update 10/25/2014

It has been almost two years since my last MRI, as I have had no changes in my health nor symptoms having any relation to brain cancer. Like anyone growing older, I have had other health issues, most recently having a melanoma removed from my arm. Otherwise, I continue to do well and live a normal life, now over 19 years after my diagnosis. I continue to take a large number of supplements, but otherwise no other medication for brain cancer.


Update 2/26/2015

In November, 2014, I had my first MRI in a long while, which again showed no signs of recurrent tumor. The reason for the MRI was that I suffered a mild stroke, which left me with balance problems and co-ordination difficulties for my left hand. Fortunately, three weeks in the rehab center has resulted in my full recovery. What this experience has taught me is that the treatment for a brain tumor leaves a lasting influence, as the stroke appears to have involved the small blood vessels damaged by radiation 20 years ago. As a friend who has had here own long-term effects of radiation said to me, "Radiation is a gift that keeps on giving". But at the time of my diagnosis it seemed like a necessary evil.


Update 10/18/2015

I continue to have no evidence of recurrent tumor, but some aftereffects of my tumor continue to cause problems. In March, I had a melanoma removed from my scalp in an area that was in the middle of the radiation field I received 20 years ago. Removing the melanoma was no problem but the wound created by the surgery wouldn't heal due to the damage the radiation caused to the vasculature. Eventually I had to have a muscle from my back transplanted to my head to sustain an adequate blood supply. Only now has healing progressed enough that I can resume normal activities.


Update 6/19/16

I continue to have no sign of any tumor recurrence, now 21 years since my diagnosis. I still have a few deficits, which were amplified by a stroke in 2014. But none are seriously debilitating.


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