Sunday, September 1, 2019

Hope Springs Eternal and the Beat Goes On--La de da de de,la de da de da

Recently I became aware of an option wherein newly diagnosed PCa patients as a matter of routine can have their cases reviewed by a Multidisciplinary Review Board (MdRB). This service is provided by a large, well known hospital located here in mid Michigan--one I am familiar with because (1) I  consulted one of their oncologists in my search to replace Dr. "Snuffy" Myers upon his retirement and (2) I underwent radiation at this facility for my gynecomestia.
In my ongoing quest to determine what to do when Xtandi is no longer effective, I thought perhaps such a review would help me to choose among the options I have under consideration and provide me with one or more solutions that have thus far escaped my attention. It also occurred to me that one or more of the MdRB members may be aware of a clinical trial well suited to my PCa dilemma.
I contacted the nurse coordinator of the MdRB to determine if a review of my case could be arranged. Shortly thereafter much to my pleasant surprise she advised me by phone that a multidisciplinary review could be arranged.
A week or so later without further contact I received a phone call from the nurse coordinator who informed me the MdRB had met and determined :
--My best choice when Xtandi fails would be  Lupron
--No clinical trials were currently offered by their facility that suit my diagnosis and PCa circumstances.
While the MdRB review provides valuable feedback for which I am most grateful, I expected a more comprehensive report; I expected and would have appreciated an opportunity to appear before the board to discuss some of the more attractive alternatives I have considered in the recent past. As one example it would have been helpful to hear what the board thought about H D Brachytherapy for me and my circumstances. Had I been given an opportunity to appear before the board I would have advised them of my long term deep-seated aversion to Lupron. I had also hoped one or more board members would be knowledgeable about clinical trials on a much broader scale than only those offered by their facility.
Stay tuned.
*Google the title "The Beat Goes On", a 1967 Billboard Hot 100 Top 10 Hit, and listen to the lyrics by Sonny and Cher.

Another Chapter in a PCA Warrior's Continuing Battle


In my (layman's) judgement Xtandi , the primary anti-cancer agent in my current protocol, has begun to fail. For the past year and a half my PSA has registered a reassuring <.01. My most recent  PSA registered .03. A biannual appointment with my oncologist provided an opportunity to get professional feedback on my research effort and focus the discussion on what to do next. Accordingly in preparation for our appointment I developed  a proposed agenda.  The primary response of my oncologist was as follows: "In my judgement your PSA remains undetectable. There is no clinical difference between .01 and .03."
My proposed agenda* with my oncologist's responses (and/or lack thereof) appears below: 
I. Clinical Studies
Are there any promising clinical studies we should consider?
NO RESPONSE
II. Erleada
This medication was suggested as a possibility at our last appointment. I have two concerns:
--Is this drug likely to work following the failure of a similar drug like Xtandi
--Its potential effect on brain function. Roughly two years ago I had a stroke-like episode while on Trental and Jarrow Torosorb prescribed by Dr. Myers to relieve a urinary problem. The episode consisted of a late sudden onset of dizziness preceded by a gentle thump-like strike to the head. A subsequent brain scan revealed (1) no indication of a stroke and (2) I no longer have the brain of a 40 year old.
NO RESPONSE
III. Brachytherapy
Note:In my proposed agenda I included a research study by Kollmeier with fairly positive outcome statistics. This report appears in an earlier journal entry consequently I chose not to include it here.
FOR THIS ALTERNATIVE YOU NEED TO CONSULT A RADIOLOGIST
 IV. Lupron
Based on research following my initial diagnosis, I have steadfastly avoided this option. For brevity's sake let's just say the reported side effects never appealed to me. In addition my previous physician, Dr. Snuffy Myers, was no fan of Lupron based on his research-related scientific background and his personal experience with this drug.
NO RESPONSE

Just prior to my oncologist appointment I received an email from one of my long-time Cyberspace Buddies, a former judge, which reads in part as follows:
"My oldest son has done a significant amount of studying in the science of herbology.  In fact, he has worked for several years at a place called Mountain Gardens in Western North Carolina.  Les is about as level headed a person as there is on this planet and does not dispense advice lightly.
A person Les  knows in Tallahassee is suffering from prostate and bone cancer.  The gentleman is in his 70's. His PSA two months ago was in the 300+ range.   Les suggested that this gentleman consider taking liquid doses of Reishi mushroom along with a liquid dose of Turkey Tail mushroom.  After two months, his PSA reading has dropped to 30.  He has told Les that he has renewed vigor and energy.  Clearly the mushrooms are doing something to charge the immune system."
In brief, unlike anything I have done in the past, I implemented this homeopathic option six weeks ago. As soon as I can determine the impact of this decision I will provide an update.
Stay tuned. 
* Edited to minimize redundancy and exclude one unrelated agenda item.
Update Sept 1,2019
My PSA has remained stable for the past three months. This pleasant surprise may be due to:
  1. My oncologist was correct
  2. The mushroom extracts are working 
  3. A combination thereof
The reader's guess is as good as mine. I have a strong suspicion which alternative is most accurate, but why spoil the fun;you be the judge.