As the
co-author who has cancer and has participated in clinical trials, I tend to see
the patient/participant side of clinical trials more than the medical side. I
have participated in three clinical trials and my life has changed in ways not
built into the study plan.
I’ll
explain. My first trial, more than 15 years ago, was a prostate cancer
prevention study. It was a double blind placebo study—half the men got an
experimental medicine and half got a pill that was neutral (sugar pill). Nobody
knew who got which pill—not the participants, doctors, or nurses. It turns out
I took a placebo for several years. My PSA (a potential marker of prostate
cancer) was in the normal range throughout the study.
At the end
of the study I was offered a free prostate biopsy and agreed to have it. A
prostate biopsy takes tissue samples from your prostate by injecting hollow
needles through your colon and into your prostate. I never said it was fun. The
bottom line was: even though my PSA was normal, the biopsy found a rather large
and fast growing tumor. I started treatment shortly thereafter. Without the
biopsy it may have been a few years before I was diagnosed, and possibly at a
much later and more dangerous stage.
In a second
clinical trial, everybody took the experimental drug and it didn’t seem to work
for anybody. No harm—no foul.
My third
trial was a six month strength building program for men with prostate cancer
and their spouses—10 couples in our group.
My wife and I lost weight and increased our strength. That’s a good outcome. But the unexpected benefit of the class was that we formed a rapport and friendship with the other participants. In the three years since the end of the study, our group has met numerous times to visit, eat, sip wine, and provide mutual support. This self-selected support group (we call ourselves the geezers) has become a positive and caring force in my life.
My wife and I lost weight and increased our strength. That’s a good outcome. But the unexpected benefit of the class was that we formed a rapport and friendship with the other participants. In the three years since the end of the study, our group has met numerous times to visit, eat, sip wine, and provide mutual support. This self-selected support group (we call ourselves the geezers) has become a positive and caring force in my life.
So although
none of the studies I participated in cured, stopped, or even slowed my cancer,
I am grateful for what I consider beneficial and possibly even lifesaving
experiences influenced by, but not directly caused by, the clinical trials.
Will you
find unexpected benefits if you participate in a clinical trial? There’s no way
of knowing‑‑but it could happen. A large majority of people who participate in
cancer clinical trials report that they would gladly participate in another
one.
To put a smile on your face see Larry's latest cartoon
Thank you for the opportunity to comment. I know I'm not alone, in being annoyed to say the least, by changing clinical guidelines. BUT, it is precisely that annoyance with our medical knowledge base inadequacy, that pushes me toward well designed trials. Condoning Rx based on the "old man" or increasingly in recent years the "old woman" passed on his/her best judgement, must be replaced by prospective, randomized trial based data. Clearly it is difficult if not impossible sometimes to test certain hypotheses this way, but we must strive to do so as often as possible. It's the right thing to do, damn it!
ReplyDeleteThank you for this insightful comment. Look for a post soon that touches on clinical trial participation and age. All the best.
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