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Thema: 6 Jahre Glioblastom!

6 Jahre Glioblastom!
Torsten Passig
31.01.2001 08:29:00
Den Erfahrungsbericht habe ich im Netz gefunden. Langzeitüberleben mit Glioblastom ist also doch möglich! Vielleicht gibt es Patienten in Deutschland, die berichten können, wie sie ihr Glioblastom besiegten. Wer setzt in Europa Tamoxifen oder Accutan zusätzlich gegen Gliome ein? Ben Williams, der über seinen GBM-Kampf schreibt, ist etwas unkonventionelle Wege gegangen, aber es hat sich gelohnt. Lest selbst!

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 any 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 rads, 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.

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 I realized 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), 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 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 continue to take to this day. 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. Late in my first year of treatment I began adding various nutritional supplements that can be obtained at the health food store. 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, DHEA, and CoQ10. 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, onions, and soybean nutlets.

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 very 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 various other options are available including thalidomide and SU-101, which are also systemic. Were I to have a recurrence, my choice of treatment would be first to have gamma-knife radiation (to buy time) and then a combination of tamoxifen, thalidomide, and carboplatin, even though this has not been tried before. However, tamoxifen + carboplatin and thalidomide + carboplatin have been tried, with some success, so it makes sense to combine all three.

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 past year, so that I am now once again able to lecture without notes. My only real complaint at this point, other than living under the dark cloud of a possible recurrence, is that I have been extremely slow to regain my previous level of physical conditioning. But that too seems to be improving, however slowly. My hope is that in the very near future I can look back on this experience in a positive light, as a triumph over the worst kind of adversity.
Torsten Passig
Andrea[a]
01.02.2001 10:05:31
Lieber Torsten,
Hier eine gute Nachricht für Dich: Soooooo selten ist ein Langzeitüberleben von GBM`s gar nicht, leider erfährst Du das von den wenigsten Ärzten. Schau mal unter http://www.untertage.com/tumor/tumorleb.htm nach, da wirst Du sogar etliche Heilungen finden !!!! Dank den Recherchen von Thomas haben wir alle wieder mehr Grund zur Hoffnung und Weitersagen ist erwünscht.
Liebe Grüße Andrea (Mutter hat GBM)
Andrea[a]
Andrea[a]
01.02.2001 10:13:35
Hab noch was vergessen, die Seite von Thomas und Ute ist total umfangreich, es lohnt sich zur Startseite zu gehen und von dort aus alles systematisch anzuschauen.
Andrea
Andrea[a]
NACH OBEN