@retireddoc Wow - your story has, given your profession and knowledge, for me, genuine impact and I so appreciate you sharing it.
I’m a G8 with Cribriform 4, Perineal invasion but PSMA PET indicating no detectable Mets. I am having (at my medical team’s advice) definitive radiation to destroy the prostate in the middle of a newer “intense” version of ADT which has daily Orgovyx plus Abiraterone. The arguments you articulated so well were in my mind but, I had a bone marrow transplant Feb 2023 for AML, adverse mutations and accompanying prognosis but which I’ve defied so far, remission and no relapse as of this writing. I had a LOT of extra abalative Chemo before the transplant at age 70 when I was very fit. Side effects have been a lot to deal with, cGVHD of the gut along with several other things all of which the various specialists have pointed to the Chemo. But I am here and so grateful to be so.
So when faced with the decision between Radiation versus surgery my ABMT people put a hold and considered the implications of radiation (probably with or without the surgery) near the hip bones etc, and my new marrow. There was nothing helpful in the literature or the experience base they could find (several of them have Hopkins backgrounds) so they made a mini case study of me and after 2.5 weeks, my caregiving doctor came back to report a unanimous but close call recommendation of radiation. I know directly from my Neurologist that, as you said “ You are a 73 year old man living in a 90 year old body.” Several of my organs have developed issues, with the pancreas and adrenal glands mostly throwing in the towel, but with cardiovascular and spinal effects as well. My immune system even at 3.5 years out, has not ‘reconstituted’ so I am still a bubble boy with significant limitations for any event where there would be a crowd attending regardless of having the sniffles etc. As I understand it, they deemed surgery as a higher risk, also taking into account my continual rebuilding of muscle mass after repeated bouts of cGVHD, ongoing steroids etc. I am doing what they recommended, armed with a fairly alarming set of risk factors. The biggest was the silent question (but which my ABMT doctor had the courage to pose) “[your prognosis is still short], you could simply wait on the prostate cancer treatment.” I went ahead and as she said to me “whatever happens, we will take care of you.”
So it’s game on. The intense ADT has been a thrilling ride and I always hated roller coasters. I hate nausea and brain fog when it rolls in. The hot flashes I don’t mind, it has been amusing on occasion but I do low impact aerobics and get hot and red faced from that, so. But whatever. Radiation prep next week and schedule to follow.
For each of us there are forks in the road and thoughts, as Robert Frost intoned, about the road not taken. I am wishing you the best in (like me) your much older physical body, mine from many rounds of Chemo and continuing maintenance - now the ADT meds which alarmingly are labeled “Chemotherapy” by the specialty pharmacy. Same effects as when I was in the Hem/Onc unit for 2+ months so I believe they’re right to designate them so.
I wish you all the very best on your road. Perhaps even though we took different forks, we may run into each other here or elsewhere. I hope so. Thank you for sharing.
@steveduke Hello Steve, quite a battle you’re in the midst of; that AML bone marrow transplant has me wondering…
I am confident your docs have it all under control, but was there any mention of depressed marrow activity caused by radiation? Any special prep or precaution?
I only ask this because my own levels of all blood cells dropped quite a bit after 25 SRT’s.
with treatment to the bed and the pelvic nodes. I then read that radiation to the pelvis causes this drop more than in any other area due to the large bone mass (marrow space) involved.
Best,
Phil