Never too many questions and I'm always glad to share info and discuss! It will be helpful to both of us and hopefully others who have similar situations can give their input.
1. I stopped taking the Daro and Nubeqa in April 2023. The hot flashes continued for only a short time as my body transitioned out but then stopped. No more hot flashes and my energy level and overall mood and outlook improved. I was handling these side effects okay and felt like they were worth it compared to the possible outcome with no treatment. What concerned me more was the potential long term side effects. I'm no expert but have researched a lot probably like you and most others on this site. I was concerned about other potential debilitating side effects - mainly coronary issues and osteoporosis. I felt like the intermittent ADT was supportable as a good option and one of my oncologists agreed with me. My other oncologist was skeptical and advised against it but is surprised and pleased with the current ADT vacation I've taken.
2. When I went off ADT I was monitoring my PSA once a month and now about every 60 days. I was told once a month is too much and creates too much anxiety. It probably depends on the individual but not knowing is more worrisome for me and I preferred checking it more often.
3. The oncologist who advised against intermittent hormone therapy was my original doctor and he did strongly recommend the triplet therapy. I chose to try just ADT first and stay away from chemo understanding that the triplet therapy is standard of care. Chemo wasn't going to "cure" me and my doctor explained the benefit of a favorable outcome in terms of only months, and that just didn't seem worth it in my opinion. I would never suggest that anyone not listen to their oncologist, or avoid chemo. It was just an individual decision that I made knowing the risks. And I continue to get second opinions.
4. I have been extremely lucky to have my wife as a "life coach" and supporter through this. She researched and read about alternatives to standard cancer care and eventually locked in on the importance of diets. When the metastasis was confirmed, I immediately switched to a 80-90% vegan diet - no red meat, chicken, dairy, sugar, etc. but I do eat fish. Whether that has been a game changer for my success on ADT, and now without ADT, I have no idea. I really wish there was a way to determine that. I do know it has helped me cope with the side effects and avoid foods that supposedly feed cancer growth. The hard part for me is maintaining weight but I do feel better. Her original research started with the book "Chris Beat Cancer" if you want to check that out. I'm trying to balance the medical and non-medical research and advice.
5. Yes, I say I'm realistic because obviously most of the data (at least as far as I have read) is that it finds a way to come back. As successful as ADT is, it's not considered a cure so I am realistic in the probable outcome of the other shoe falling but hopefully way down the road. There are some isolated cases where lung-only metastasis patients have had favorable outcomes. So, I'm always hopeful and trying to figure out next steps as the medical options improve.
6. I have no scans scheduled at this point, but if my PSA jumps up again, the plan would include a PET scan to identify the location and extent. I did have a chest CT a couple of months ago and lung nodules still showed up but were fewer in number and smaller in size. Unlike with a PET scan, the doctor could not say which ones were cancerous and which ones were benign but the PSA is down. I think for all of us here, it's the unknown that is so difficult and then trying to figure out a path with all of these variables.
I'll be hoping to hear good news from you! Let's definitely keep comparing treatments and alternatives.
So your a vegan diet man; may as well try white button mushrooms in powdered form 1/5 tsp. Mixed in the coffee or hot tea. Works for me on a daily basis. PSA < .01 for 24 months now