My ADT Story, Feedback Appreciated

Yes, my oncologist tried to explain but I wasn't following it well. I do remember him saying that the benefits of ADT diminish after 2-3 years; thus less benefit to continue.

All I know is I'd rather take a path that keeps my PSA from rising and cancer from spreading.

Hi All - I was a 3+4 Gleason 7 with spread into seminal vesical and a PSA of 10. I started Tx 6/13/24 with 25 sessions of radiation and monthly shots of Lupron. Experienced all the typical negative side effects almost immediately. Continued with Lupron shots for 7 months and switched to Orgovyx 1/14/25 with the hope of a faster recovery time when ADT stopped. Side effects continued. I've tried many things to combat those side effects with little improvement.
Prior to Tx, my PSA was 10 and dropped to 0.09 by 10/4/24 (4- 5 months from start of Tx). PSA continued to drop and on 4/19/25 it's at 0.02. Originally my RO wanted me on ADT for 24 months. Ironically, I met with him yesterday for a 6 month follow up visit (exactly 1 year ago that Tx started). I started the conversation with how I'm tired (literally) of the dam side effects of ADT and can we explore me going on the Estradiol Patch. Well, much to my surprise he said I think you can stop the Orgovyx since my PSA has continued and maintains to be low. He felt with my PSA numbers being low for this period of time there was longer a need to stay on ADT. He said that research and recommendation are drastically changing with PCa and the duration of ADT. We then realistically discussed the recovery period of T for me (another story for another time) which would include follow-ups and monitoring. At first, I felt relieved and happy to stop but not prepared to stop immediately.
I also have been seeing a urologic oncologist (UO) since January 2025. I see him again mid-July and will consult with him on the stopping of Orgovyx. RO said if my UO was in agreement then maybe I should stop. When I last saw my UO 3 months ago, he nicely pleaded with me to stay on the ADT for at least a year and probably best for 18 months. I'll see what he thinks.
Bottom line is that each of our situations/cases are different and so are our oncologists. PCa research and findings are changing pretty quickly and that is a good thing. I try to stay up on these changes and new innovations as much as I can and hopefully things will be better for all of us.

I started Lupron in April of 2017 my PSA started rising again in September of 2019. When your PSA starts rising, while you are on ADT, you are considered castrate resistant. My PSA kept rising till they added Biclutamide. My PSA kept rising for that year. I was on Biclutamide, very slowly however, I then switched to Zytiga.

I was on Lupron and Abiraterone for three years. Horrendous side effects. I have been off for eight months. Still have side effects, but PSA < 0.1. Testosterone is just starting to return. Read about “intermittent ADT” instead of “continuous ADT”.

The very fact that you already have these ailments and are taking meds for them underscores the very reason why you should cone off ADT and let your body take a breather.
Orgovyx is a miracle drug for reducing PSA and I too was fearful to come off of it. But if your PSA starts to rise after you come off of it, you can either go back on it or your drs may encourage a course change and add different meds in combination as others have suggested.
Castrate resistance is a hotly debated and not very well understood topic; it happens in a variety of treatment settings or not at all.
I look at the cessation of Orgovyx as being just as important as its initiation - you NEED TO KNOW the effect ADT is having/had/will have on your cancer. Staying on it out of fear will harm you just as certainly as any of your other ailments - all of which are made worse by ADT.
Right now your drs are in the dark, not knowing if their treatment has been successful or not; if it hasn’t, they need to know this in order to make the life saving treatment decisions that will keep you alive for years to come.
Phil

Yes, it's almost certainly the comorbidites that are concerning them. They might not want you to end up with kidney failure or a stroke trying to prevent a cancer recurrence that might never happen anyway (or would happen later that the other crises).

Still, it's your life, not theirs. Let the doctors explain the long-term risks and possible interactions with other meds, then state clearly what *you* want and what risks you're willing to accept. I hope you can find common ground, and best of luck!

I did not know ADT with Orgovyx was linked to stroke and kidney failure? I know one of the complications has something to do with heart rhythms? I've had low kidney GFR for many years-- but now that you mention it, maybe it has trended down more the past 12-18 months.

Yes, reduced testosterone can lead to elevated risk for many conditions. There's advanced-stage research into using the estrogen patch Estradiol (?) to mitigate them, but I think that usage is still off-label for now.

In 2021 with a de-novo stage 4b diagnosis, I knew there was a small risk I might die from hormone-therapy side-effects, but an almost 100% chance that I'd die in a couple of years without it, so it wasn't a hard choice. 🙂

A webinar on PCF.org from May 27 titled Hormone Therapy, when and why, has been posted on Patient resources; webinars and may be of interest to you.
Layman here: However, I doubt that you will ever be denied ADT if you want to continue the medication.
No judgement intended; only my observation from reading the string of q & a here, that your mind is made up and that you are more comfortable on Orgovyx. You have medical advice from your physicians and input from the nonmedical folks on this string and your comfort is with continued ADT.
And that, my friend, seems to me to be your educated decision.
Just keep paying attention to your medical status. And researching and educating yourself as this area of PCa tx is evolving rapidly.
Best wishes.

I actually added a post regarding my husband. He had surgery and radiation. It appears from what you said that you were given the Orgovyx can I ask why you were given that and not the older one? My husband is also stage 4. Can you tell me how often you take it? Is it pill only? My husband has MCI mostly good days but there are a few when he says he has already taken his pills. Did you take the pills prior to going on it he has to take some for 14 days prior to his injection. Thanks so much