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Orgovyx
Hello All:
I am 78 years old and had my prostate removed over 3 years ago. Post surgery my PSA was < 0.01. After two years it began to climb. At .93 a PMSA PET Scan was done finding no signs of cancer. The Mayo Clinic oncologist in Jacksonville put me on Orgovyx. I have been on it for over 7 months. I have had some weakness and hot flashes but nothing terrible which would alter my life style. After three months on the drug my PSA declined to .04. I go back to oncologist next week to take another PSA test. The doctor indicated I could go off Orgovyx (for awhile) if my PSA stayed low getting some of my testosterone back and I would feel stronger.
My question to the group is, "Has anyone gone off Orgovyx and had to go back on because your PSA began to rise again?"
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Orgovyx can confuse the PSMA/PET. You might talk to the radiologist. I was told that this PSMA scan can be false negative if you are on Orgovyx.
Best wishes.
I know many people have that have done that. Some have stopped Orgovyx or Lupron, which works the same as Orgovyx, and a year, more or less, later, they have had to go back on it. it is possible you could be cured but a lot of it depends on your diagnosis.
I am surprised they didn’t do salvage radiation. Normally they do that after the prostatectomy when your PSA rises above .2. I guess the clear PSMA scan was why they didn’t do it.
What was your Gleason score after the surgery? Were there any other complications like intraductal or cribriform? if you had high Gleason, above seven, or the other two complications then it is very likely it will come back. The thing is no two people are the same so you can’t tell someone exactly what will happen to them.
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4 ReactionsYeah, I thought radiation after BCR was standard.
Thanks for everyone's comments. Two points in order to address issues raised in previous responses; I cannot have radiation because I have a J-Pouch and radiation could damage the J-Pouch tissue. Additionally, I did not begin taking Orgovyx until after my PMSA PET Scan so there was no masking of any residual cancer. Finally my Gleason score was 9 and I probably should have expected some residual cancer even after my prostate was removed. At any rate the oncologist appointment is Wednesday and we will determine the future direction of treatments at that point. Thanks again to all who responded.
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2 ReactionsYou ask...""Has anyone gone off Orgovyx and had to go back on because your PSA began to rise again?"
I can answer the first part, yes.
The 2nd part, not yet, but the clinical data i the six months since my medical team and I agreed to stop Orgovyx says it's in my future, we just don't know when. Given my clinical history, I would venture 18-24 months. When coming off treatment, we actively monitor, labs and consults every three months and have decision criteria about when to image, three or more PSA increases and PSA between .5-1.0. Informed by clinical data, the PSA, PSADT and PSAV, imaging, and clinical history - GS 8, GG4...we decide on treatment, when to start, with what, for how long...
For now, it's akin to driving out in eastern Colorado on my way from Kansas City to go skiing in Keystone, Breckinridge and Vail, I see the distant headlight a train so I know it's coming, when will it get here. hard to say, it will though (I think 18-24 months)!
I meet with my oncologist on Thursday. I know what he envisions as next treatment when that time comes, 24 months on Orgovyx and an ARI, likely Xtandi. Will we add SBRT, that depends on imaging results. My oncologist knows as does my radiologist) that we will want to discuss treatment options - say the PATCH trial, EMBARK but with using only an ARI, or SBRT and six months ADT.
Only thing I know at this point is I will go back on treatment at some point, my clinical history says so, and, I will have choices.
Kevin