Sunday, January 14, 2018

January 14, 2018 – Happy New Year

Since my last post much has happened, but not too much on the health score.  I had my next checkup on December 6th which was accompanied by another Lupron shot.  I actually had a scare with my PSA, which, when I looked at the results I saw 0.06, which is double that of my previous 0.03.  When my oncologist said that I was doing very well with an “unmeasurable” PSA I asked how that was, since it was 0.06??  He said, “Didn’t you see the < sign before the 0.06?”  So the result was <0.06 or less than 0.06, not 0.06.  Whew!

So why was this test termed unmeasurable at less than 0.06 when they were able to measure 0.03 before?  The obvious explanation is that the lab used a less sensitive assay.  This is annoying to an engineer.  Don’t mess with the tests!  I would hope to have the same test assay as I had before the next time so I have the best measure.

My testosterone was 58, which is higher than my oncologist would like it to be.  It may be because I was two weeks overdue for the Lupron shot, but now the he wants to see me in two weeks to check testosterone in the middle of the 3-month cycle.  Lord knows I don’t want my testosterone to be lower from a side effects standpoint, but I also want to starve the cancer!

My trip to Washington D.C.  On December 14th I went to Reston, VA to be on a panel for one of the Congressionally Directed Medical Research Programs under the auspices of the Department of Defense.  The program in which I was chosen to contribute was the Prostate Cancer Research Program. Through a very rigorous two-tier process, this program chooses which research facilities, from of a large number of proposals, will get funding toward finding a cure for prostate cancer. My panel was comprised of leading scientists, clinicians and fellow consumer reviewers (prostate cancer survivors).  The consumer reviewers were asked to assess proposals in the light of potential patient impact and also provide a sense of reality to the scientists, many of whom had never met a real prostate cancer survivor.  The experience was very tedious, with several weeks of proposal reading and review preparation, but it was also fascinating.  It is incredible what we do know about the stages of prostate cancer and equally incredible what we don’t know. 

I learned a few little tidbits that were eye-openers for me.  For example, I knew that prostate cancer tends to be a slow-growing disease (with exceptions of course).  Because of this, unlike other faster-growing diseases, prostate cancer mouse studies are difficult because the life span of lab mice is around 2 years and lab rats 3 or so years.  In other words, unlike studies of fast-growing viruses the “patients” most often die before advanced stages of prostate cancer can develop naturally.  This means that scientists have to resort to all kinds of unnatural methods to speed up or slow down processes.  This also means that with prostate cancer one of the last steps before human trials can be problematic.

I also learned that in practice the typical PET scans are less effective after androgen deprivation treatment (Lupron) because the uptake of glucose is less and can lead to missed tumors.

Most important to me personally was that some patients with certain genetic markers have responded well to specific genetic therapies.  Since I have a family history of prostate cancer that goes back several generations, it is time for me to get some genetic testing.  The possibility that I may have favorable genetic markers that could lead to successful treatment alone makes my trip to D.C. worthwhile.

As for my contribution to the panel, I hope I did help to ensure that our tax dollars go to very worthwhile research projects that will ultimately lead to a cure for prostate cancer.

If you are interested, this is a brochure on the program:   CDMRP DoD Brochure.pdf

Next steps.  I am hoping to get my genome sequenced to see if there is any other treatment that might be better than the Lupron.  The “problem” with this is that it does appear that my cancer is responding to the Lupron, so the doctors may not want to okay any other treatment.  This brings up the subject of Protocol.  Apparently every disease has a treatment protocol that doctors follow (often somewhat blindly) and insurance companies expect to pay for.  For prostate cancer at my stage the protocol is to treat with Lupron or similar androgen deprivation drug and if that shows a drop in the PSA, continue.  If the PSA drop is sluggish or there are painful side effects of the cancer in the bones, chemo is called for.  After chemo when the cancer stops responding to the androgen deprivation therapy Lupron or similar drug (Castrate Resistant Prostate Cancer), then there are some drugs that are called for.  These deal mainly with the side effects since at this point there is no cure.  Fortunately in my case I am not there yet.  I believe this is (1) because we broke protocol and went with chemo and Lupron out of the gate, (2) my general health was pretty good going into it, (3) I made dietary and supplement changes, (3) I’ve maintained a positive attitude, thanks in large part to a wonderful support network of family, friends, doctors, fellow church members, and God’s help.

So, since I am doing well, there will be a desire on the part of the doctors to stick to protocol and not try anything new.  I don’t agree.  I think at the least I have to prepare for the next phase.  Hence I will be pushing to get my genome sequenced to see if I might be a candidate for other treatment.  That’s my next step.

In the meantime, I thank all who read this for your support.

Les, Supplement Eater Extraordinaire

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