In 2010 at the age of 59, I had Da Vinci surgery with a Gleason 4+5=9 and PSA of 9. Post surgical biopsy showed all margins clear with no seminal vesicle involvement and Gleason post-op score was changed to a 4+3. Subsequent PSA was non-detectable as tested every three months. Five years after surgery I felt confident enough to start TRT.
For the next ten years PSA was non-detectable with no incontinence and an active sex life. In 2019 the cancer suddenly went active again with PSA rising from zero to 2.0 in 18 months. PET scan revealed two lesions in my seminal vesicles so I went on Lupron for six months. After four months, I had 35 Proton treatments targeting seminal vesicles and prostate bed. A few months later when the Lupron wore off, and my testosterone rose, my PSA started rising immediately. A new PSMA scan at UCLA June of my 2020 revealed a microscopic lesion in right pelvic bone.
Three treatments of SBRT was used 6/20/2020 without ADT because several doctors said it would not be needed on such a small lesion. But right after SBRT treatment my PSA continued to rise monthly from .29 to 4.9 over six months. (It was a slow rise at first but the last two months my PSA skyrocketed). No one could account for the dramatic rise except that during that time I had a severe eColi blood infection treated with IV antibiotics.
New PSMA scan 10/18/2021 indicated two small lesions in my lower spine and one in my hip bone. So I started Orgovyx 10/27/2021 with three treatments of SBRT performed at UCLA 18 days later. Bloodwork on the day before SBRT showed my PSA had dropped to .070 along with testosterone to almost zero in 17 days. PSA 05/05/2022 was .008 and testosterone <7 ng/dL.
Even after SBRT, we realized that spinal mets means the possibility of lingering rogue cancer cells or micro tumors too small to see on PSMA scans. We are hoping that those can be starved with Orgovyx. Dr. Steinberg at UCLA thinks SBRT plus Orgovyx is all that we need. My oncologist, Dr. Dorf, says a secondary agent is not necessary after SBRT. She prescribed six months to one year of Orgovyx with 90-days shots of Xgeva. My hemoglobin is way down but other markers are okay. I’m now at the seven month mark on Orgovyx and will be seeing her this week to ask about an ADT holiday.
I’ve heard about the PEACE study and how a secondary agent is advisable yet when I brought that up to her a few months ago she said that those conditions don’t apply to my case.
So far I am tolerating the ADT side effects well with no depression or anxiety, although sometimes I experience brief afternoon fatigue and of course those pesky hot-flashes. I lift weights (resistance bands) and hike daily along with wrestling practice twice a week. There has been no weight gain and I am very fit but endurance is declining. Getting up too many times a night to pee is aggravating.
What do you guys think? ADT holiday or add a secondary agent?
Diagnosed almost 3 years ago
Why would a metastasis “disappear”
An Update on My Metastatic Cancer
PCA Prognosis?
When To End An ADT Holiday
