Wednesday, July 29, 2009

Think I'll Take a Nap

Every couple days I get the urge to take a nap. I don't necessarily want to take a nap - it makes me feel like the old Grandpas you see on TV snoring away in their rocking chairs. It tarnishes my self-defined macho image.
My Doctor assures me (or reassures me) it's just that I'm old as dirt (almost 69). That's true, of course, but I don't actually feel that old.
Fatigue is listed as a possible side effect for each of my several medications. Now that's something I'm more willing to believe.
And there's the possibility that it's the biological process of my ancient immune system fighting off the Prostate Cancer that tires me out a bit.
Whatever it is, my energy level is definitely below par (at least below what I want it to be). It could be that the old geezer nap might not be such a bad idea after all - maybe. I'll let you know.
What is your experience with fatigue - and overcoming it? Let me know.
axman

Friday, July 17, 2009

More About Clinical Trials

Back on April 8th I talked a little about my experience with clinical trials. I'm doing some research on who particpates in clinical trials - or more likely who is NOT participating. Fewer than 5% of those with cancer ever join a clinical trial.

Why don't people participate? Nobody knows for sure but there are some interesting survey restults. More men than women participate - a bit of a surprise because women are much more likely to seek medical treatment. About half of those doctors surveyed reported not even telling their patients about clinical trials. They cited being uncomfortable about discussing trials as a major reason. You may have to ask THEM!

Some people who know about trials opt not to participate - everybody has that choice. Some Health Insurance carriers refuse to pay for any cancer treatment if you are participating in a clinical trial. In about half of all states there are laws that now require Health Insurance carriers to pay for 'normal' treatment costs that would occur whether or not you were in a clinical trial. Medicare (if you're covered) pays for most regular treatment costs if you participate in a Clinical Trial.

Some trials have been cancelled because they couldn't get enough participants. That delays approval of potentially helpful drugs.

I definitely want any drug that might help me to be tested and approved if it actually works. So if you're so inclined and eligible - at least think about participating.

The NIH (National Institutes of Health) has a comprehensive site listing trials abailable all over the U.S. http://www.clinicaltrials.gov/ct2/results?term=cancer.

axman

Saturday, July 11, 2009

Don't Read the Fine Print!!

Like many of you, I've been taking several medications to "manage" my prostate cancer for a while now. There are dozens of drugs in several categories that are supposed to slow prostate cancer growth in strange and unique ways. That's old news.

If you have a slightly perverse mind - like me - spend an entertaining half hour googling your meds and checking out the Side Effects section (sometimes called contraindications). No matter what the drug, there will be a list of possible side effects as long as your arm - it's required by law.

After reading about the possibility of hot flashes, constipation, incontinence, diarrhea, cramps, swelling, headaches, weight gain, memory loss, and impaired vision it seems I might be better off with the cancer than the side effects! My oncologist says different but HE isn't taking my pills. But to tell it like it is, I haven't actually experienced MOST of the possible side effects.

So, I have decided (for now) to ignore those lists until I actually experience a contraindication or two.
axman

Saturday, July 4, 2009

Watch Out for that BUS!

Just after I found out my prostate cancer had 'recurred' after the surgery to end all surgeries and cure me forever, I was feeling pretty sorry for myself. Why me? It's not fair! I'm going to die a horrible death! My urologist didn't seem so upset. I was just one of 50,000 American men who was diagnosed with recurrent prostate cancer every year.

He told me, "Don't worry, you'll probably get hit by a bus before your prostate cancer kills you." Somehow that was reassuring. Nobody knows what will happen next. I actually could get hit by a bus tomorrow or I might live to 97. Men with prostate cancer die every day of all sorts of reasons other than prostate cancer. And most men with prostate cancer survive every day.

All I can do is get up every morning and do something I want to do and then repeat the process tomorrow morning. Easier said than done, but my level of anxiety is much reduced over these six years even though I still have prostate cancer and it is relentlessly, but slowly, progressing.

So I do what I can, try not to worry about what I can't control, and I stay far away from rogue busses. So far - so good!

axman