Taking Orgovyx long term

He does know more than your Urologist- a 24 year veteran with PCa. Lol

Long-term prostate-cancer patients don't know more than urologists or oncologists, but we do know different things. We have the lived experience and the results of our discussions with other patients, but not the formal training to cover the dangerous edge cases. That's why treatment choices need to be a consultation between the doctor (the expert) and the patient (the one who literally has skin in the game).

Of course, if the doctor isn't willing to consult and just wants to dictate, then it's time to find a new doctor.

I'm a bit concerned now. I was a 3+4 with cancer spreading to seminal vesical. Starting 6/12/2024, I went thru 25 sessions of RT as well as monthly Lupron shots at the start of RT. My PSA reading was at 9.52 (2 months prior to 6/12/24 start of Tx) and the next PSA test 10/4/24, PSA dropped to 0.09 and has continued to drop (last PSA reading 4/19/25) was 0.02. I was on Lupron for 7 months and switched to Orgovyx January/2025 as it is to have a quicker recovery period. Thus, on ADT now for 11 months. Originally, Rad Oncologist wanted me on it for 24 months. I now see a urologic oncologist and he feels I might be able to stop ADT at 18 months if my PSA continues to drop and stay undetectable.
The question now for my situation, is it realistic to think that if I remain undetectable, I can stay off ADT AND my T will recover and MAYBE I can end the ADT side effect and try to get back to a somewhat normal life? Please note I understand the cancer can return but is there any chance my life could be closer to what it was?

Long-term prostate-cancer patients don't know more than urologists or oncologists, but we do know different things. We have the lived experience and the results of our discussions with other patients, but not the formal training to cover the dangerous edge cases. That's why treatment choices need to be a consultation between the doctor (the expert) and the patient (the one who literally has skin in the game).

Of course, if the doctor isn't willing to consult and just wants to dictate, then it's time to find a new doctor.

Im kinda in the same boat are the shots working im thinking about doing it also thanks and good luck

In 2010 I was 62 and a biopsy showed Gleason 3+4. Had surgery, after surgery they told me it was a 4+3. It was only stage two. 3.5 Years later it came back and I had radiation. 2 1/2 years later it came back and I went on Lupron. I became castrate resistant 2.5 years later and added biclautamide. 1 year later went on Zytiga, which kept my PSA down for 2 1/2 years., After some AFIB Issues I switched over to Nubeqa, The last 17 months I’ve been undetectable. I became stage four about six years ago. I did not find out I was BRCA2 Until four years ago.

Because of BRCA my cancer will keep coming back. I understand your high risk situation, not only do I feel it I have heard from people in your situation every month for years, I go to Prostate cancer group online meetings more than once a week.

I have had the one metastasis on my back zapped with radiation.

You might also take a look at Darolutamide/Nubeqa for the potential of reduced side effects and returning testosterone while keeping PSA low. Worth researching and talking with your specialist(s).

Hi Jeff. How many radiation treatments for your metastasis on your back did you need ? Also did your PSA drop after the radiation ? Thanks , Steve.

Thanks for your suggestion. Is this to replace Orgovyx?
I started with Lupron monthly shots (for 7 months) and changed to Orgovyx (now for 5 months). The damage is done with these negative ADT side effects. On ADT now for 12 months and working on combating the worst effects of fatigue, hot flashes, muscle loss, and severe bone density loss. Urologic Oncologist recommends I continue with ADT for 6 more months to see if PSA stays low (at least at 0.01). At times I just hate all of this and other times I'm good.

There were three SBRT treatments. They wanted to do them in smaller doses because the L4 was already damaged a little, and the cancer was wrapped around it.

My PSA went to undetectable within two months. I had also switched from Zytiga to Darolutamide, Which works a lot better for me.

My PSA, switched to undetectable two months after having salvage radiation 12 years ago.