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HIV+ / brain cancer marathon runner-- Too bad we don't choose our fatal disease
Feb 16, 2003

I have been HIV positive for 5.5 years. During that time period my viral load has almost always been undetectable. I never had any opportunistic infections during the past 5.5 years. I recently wrote a book pleading to get AIDS medicine out to people all over the world. 8,000 people do not have to die every day. I was living proof that you can beat AIDS if you can just get the AIDS medicine and lead a healthy lifestyle. A few months ago I had a seizure at a book signing in Barnes & Noble in Greenwich Village. My doctors have assured me that my illness has nothing to with my being HIV positive. Ironically this was after I had just completed a two month 14,000 mile book tour around the country. It turned out I have brain cancer, the glioma type. Now my doctors look at me and leave behind a list of funeral parlors. Maybe I'm exaggerating just a bit, but the survival rates are not great. Perhaps it is worse in my instance because they could only remove 90 of the tumor. I remember the doctor informing me before the biopsy that my tumor was near the front of my brain so it was operable. I thought great, get the bloody thing out of my head and let's move on. That obviously wasn't the case. Not only that, I had a glenoid fracture at my shoulder and I have a blood clot in my leg. I joke with my doctor saying that I went from his best patient to his worst one overnight. Nevertheless I am upbeat. I started radiation and only have eight sessions to go. But a few strange things have happened to me along the way: First, as much as being HIV+ is such a horrible stigma in today's society, nothing is more respectable an illness than brain cancer. Too bad, we couldn't choose our fatal diseases. People and family have been unusually kind and caring. Now that you know part of my background, my questions to you are as follows: First, my T-cells are now over 1,000, about 15 higher than they've ever been. How can that be? Isn't brain cancer supposed to take a toll on my body instead of making my immune sytem stronger? Second, I am back to running 3.5 miles per day, increasing my mileage 5-10 weekly and plan on running the 2003 NYC marathon. When I asked my doctor if exercising and eating right would improve the likelihood that the tumor will not come back, he replied no. I found his response to be so disheartening. Is he correct and whether or not the tumor grows back is just a crap shoot?

Richard --

Response from Dr. Dezube

Dear Richard: That's quite a gut-wrenching post. First, I can sympathize with your comments about experiencing more kindness and caring with the diagnosis of cancer, than with AIDS. I have certainly heard this very often from my AIDS patients who also have cancer. Much work still needs to be done so the stigma of AIDS can be lifted. I can't explain why your CD4 counts have risen, but I've seen this happen. Most likely your glioma is NOT related to your HIV disease, but that said, several articles have been published on gliomas in HIV-infected patients. I'm often asked if good diet and exercise will improve the likelihood that a tumor will not come back. Certainly proper diet and exercise are indeed helpful in terms of making one feel well about one self. Does it help prevent recurrence? There's certainly no robust data indicating that such maneuvers help prevent recurrence. Oh how, I wish it were so simple. I urge you to remain hopeful-- it is indeed easy to get disheartened. Good luck in the 2003 marathon.

What Should my next step be? Night sweats
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