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?
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10 years completely nondetectable and even on TRT was a strange set of circumstances. Everyone was amazed that the beast mysteriously returned and no one could figure out why. The only thing that we could possibly pin the sudden rise on was that during a one previous year just before the rise I had undergone three rotator cuff surgeries. Maybe that’s what caused my immune system to weaken?
3 cuff surgeries? Wow talk about pain? It is a long winded beast . I’m 6 yrs clear now. But Hearing your story shows me that it always returns if we live long enough . I’m
Not living in denial . I’m just thankful for each days not under the gun much. Good luck to you in this! Take care
Indeed those cuff surgeries were difficult especially considering that the last two required steel cables attached to the bone to lock my tendons down. I was supposed to wait a year before returning to training but instead tried to come back slow after a few months. This of course aggravated everything. I even competed six months after the last surgery. When I got in the ring I could barely raise my arms to brush my teeth that morning. Consequently I got my ass kicked.
Brazilian Jiu Jitsu. Most people think that RC injuries are always tears. But in my case it was both from impacts during Judo practice and lifting weights incorrectly--primarily shoulder raises wearing down the tendons. You'd be amazed at how much dangerous lifting in the gym occurs that is because of incorrect technique promoted by big musclebound athletes. Spend some time with physical therapists who focus on sport injuries and are in great shape themselves and you will be amazed.
You can also find an abundance of educational videos at athleanx.com
I’m hip! I lifted for decades and almost every weightlifter screws up their shoulders . You did an extra job on yours. I’m sorry . I don’t see how you can compete now without hurting ? My mentor “ master James ,” Huntington Beach ca,Vietnam vet jui jitsu master passed 3 yrs ago . Even at 70 ,no 3 men could take him . His son is a brute also and my friend . These guys can give and take pain . Never seen anything like it before . Rip master James . With your training you can still f somebody up with a brief contact . Good luck healing yourself ! 💪🤙🏽
Thank you. Yes that’s what she told me was the reason that the PEACE study didn’t apply to me was because it was for the newly diagnosed. She wanted me to take the Xgeva as a precaution even though my bone scan was clear except for some minor arthritis in my hip. She felt that getting that Xgeva shot every 30 days was too strong and that’s why she said every 90 days.
I actually told her that I could handle 18 months of Orgovyx and she said a year should be sufficient but offered to discuss it this week. When I asked her before if a longer time gave me a better chance she said there’s still no proof of that.
I like that she did the preventive xgeva for you .. my mo waited four yrs until osteopenia shot my bones . It is like anything. Better to prevent than try to catch up and repair damage done . Good luck ! 🏜
My Dexascan did reveal a small amount of osteopenia in my right hip. I'm not sure if that was because of a prior existing chronic hip injury or from recent SBRT treatment to that area--same locations.
"An updated, subgroup analysis of the ENZAMET trial among newly diagnosed men with metastases confirms the triplet of ADT+enzalutamide+docetaxel increases survival. 5 year survival was 60% for the triplet vs 52% for ADT+docetaxel. "
So triplet therapy works for newly diagnosed... but not for recurrent men?
Is Xgeva a questionable drug for me to take at this stage? I was under the pression that it interfered with bone metastasis. The less drugs I take the better.
If your BMD is OK without it, ask her if you need it now. It doesn't interfere with bone mets by itself, but there was some indication that Zometa+ Celebrex extends survival - you can email the following to her and discuss:
There is also the middle of the road way, that of tappering off. Gradual drug dose reduction while monitoring PSA for achieving an equilibrium. I am trying it but I am at an earlier stage compared to you. There is also a gentleman from Norway trying something similar closer to your state. More info in my Bicalutamide Maneuvers thread.
Depleting the hormone sensitive cells, that are controllable, leaves proliferation room to their uncontrollable non-sensitive counterparts. It should be understood that energy is required to fuel the division of cells of either kind. The energy that the body can supply for such a purpose is capped and grows in magnitude as the disease aggravates. Preferential fueling up of the bad cells, isn't a wise thing to do IMO.
I like what you’re doing! Iv antis? That was a bad infection. No more of those ! Ok?
2010 Radical prostatectomy with SV left intact but a half a suspicious nerve bundle removed. For the next ten years of PSA testing every six months there was no detectable PSA whatsoever. Five years after surgery, I believed that I was cured so I went on TRT. Roughly 5 years after starting TRT my PSA suddenly mysteriously shot up from non-detectable to 2.0 over 18 months.
During that PSA rise to 2.0 over 18 months I kept pointing this danger out to my primary care doctor who kept insisting that there was no cause for alarm. Finally I went back to City of Hope where startled oncologists reviewing my medical records asked me, "Where was your primary care doctor 18 months ago?" Reconfirming what we all realize by now that we must be our own advocates.
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Diagnosed almost 3 years ago
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