One Step Closer to the Edge

This past November, I participated as one of only a few “consumer advocates” in the U.S. on a research panel for the Prostate Cancer Research Program. I wanted to do this because it involved reviewing research proposals from scientists around the world who are trying to develop novel therapies and approaches for dealing with advanced prostate cancer. This program – which is ultimately managed by the U.S. Department of Defense (surprised? I was) – has funded research that has produced five groundbreaking drugs to combat advanced prostate cancer in the last decade alone. I have been on several of these drugs and they have no doubt extended my life by at least five years so far.


It's good that I did this, because trying to understand the “lay abstracts” that I had to review were on a par with trying to understand cryptocurrency and “blockchain” technology, which I still do not understand and likely never will. It was great practice for reviewing “informed consents” for clinical trials that are laced with medical jargon, which I am doing now prior to making a very important treatment decision.


I have already had my interview with the National Institutes of Health and have been accepted into their trial if that is what I want to do. However, on my newly developed Guinea Pig Scale, I would have to give this one four out of a possible five guinea pigs. I like that the trial is being run by the NIH and I like that it is free to patients. However, I’m not a huge fan of the fact that it relies entirely (like as in 100%) on “investigational” (i.e., unproven, non-FDA approved) drugs. The other thing is although I used to live on airplanes, I am not in a huge hurry to start traveling back-and-forth in a flying Petri dish, anticipating the side effects of four unapproved drugs being used in a novel combination for the first time in human beings. Yikes!


On a related note, I had my call with the Principal Investigator at the University of Michigan’s Rogel Cancer Center last week to discuss a clinical trial they are offering that combines an immunotherapy drug (i.e., Keytruda – you’ve seen the commercials by now), a hormone therapy drug called Enzalutamide (that I have already been on and failed), and something called a “bromodomain inhibitor,” which is designed to reduce the resistance to hormone therapy that I have developed that is allowing my cancer to spread. I give this one only two guineas on the guinea pig scale. If this trial is successful, hormone therapy drugs may begin to work again for some period of time, which would be awesome.

Anyway, thank God there are people out there that dedicate their lives to this research work, because I am not smart enough to do it myself. Looks like I might want to begin researching the best wine bars, bottle shops, coffee emporiums and Mexican restaurants in Ann Arbor.


Until next time,


Steve