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@kujhawk1978

hmm...My urologist doesn’t give me much feedback and just says “stay on the Luperon forever”

Does he say why?

Depending on your clinical data, he may not be "wrong," albeit he may not be right.

Intermittent ADT (IADT) is a possibility in advanced PCa. If so, discuss with your medical team the criteria for going off ADT, how you will monitor for recurrence after and what criteria will result in a decision to go back on.

I am high risk, advanced - GS 8, GG4, 18 months to BCR, rapid PSADT and PSAV, yet the two times I have done ADT, they have been for defined periods, 18 months of Lupron and 12 months of Orgovyx.

The Lupron was planned for 24 months in conjunction with chemotherapy and WPLN radiation. Dr. Kwon agreed to stop at 18 based on my response vice 24. The 2nd time my oncologist wanted to do 24 months of ADT + ARI and SBRT, I wanted do six of ADT, no ARI...we settled on 12 months of Orgovyx and based on my response, would decide then whether to continue in three month intervals until the 24 month point, then come off if the clinical data supported it. Same with the ARI, we decided not add it unless the Orgovyx did not drop the PSA to undetectable within the first three months, it did...

IADT may not be appropriate for all in advance PCa, here's one article, you can find others. Discuss with your medical team. If they say no, ask them for their reasoning and what data supports heir decision based on your clinical history, not the "populationbased data!"

You say "I’m experiencing some muscle loss and some testicular shrinkage already and wondering if it can be reversed if I stop the Luperon? Yes, in part depends on the recovery of T which can and does vary, exercise may help in the recovery as well as the muscle loss, especially resistance training.

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I really appreciate the feedback. It’s all just really complicated. I’ll get my first PSA test (post Radiation) soon so hopefully that will tell me more. I always thought that after radiation I could get another “test” and determine if it was all gone then go about my merry way .. just realizing it’s not that simple.