@ajpernsteiner I would like to learn from your experience how you approached your oncologist. did you have PSA tests every three months after taking a break on Orgovyx?
I am surprised that you had bone lesions after the break. Can the lesions not be radiated? Did Xtandi work?
I ask because I was on Orgovyx for six months, starting from two weeks before my SBRT for Gleason 7 (3+4), Stage 2, unfavorable intermediate, positive on 8 of 14 cores, no metastasis. I am off Orgovyx for a week now. I am hoping for the best, but I'm not ruling out that there was undetectable metastasis before my treatment, and that I may have a recurrence in the future.
My second post-SBRT PSA test is this coming week and radiation oncologist consultation the week after. Maybe you can provide some tips on what questions to ask my oncologist. Before my treatment began, she said I might be on Orgoyx 8 months to a year, maybe longer, it depends. But after she reviewed my first PSA test result down to 0.36 from 7.9 and 10.5 at diagnosis, she said 6 months was enough.
I was glad to stop after 6 months, knowing that some of us who had radiation opted out of ADT and did well; one saw his PSA continuously declining the last 26 months post-radiation which is a very good trend. I hope mine does not begin to rise too soon.