I started a thread back in Sept '21 with my experiences on Orgovyx
https://www.healingwell.com/community/default.aspx?f=35&m=4266203, but let me summarize here and provide an update since my last post in January.
I was diagnosed just a year ago in April 2021 with 3+4 Prostate cancer deemed to be T3a based on the MRI. While the T3 staging would normally categorize me as high risk, my MO considered the low level of Gleason 4 (<=5% in all cores where it was found) and felt it appropriate to treat me as unfavorable intermediate risk, and so 6 months of ADT. His first choice was Lupron, but I have a rare genetic cardiac channelopathy (Brugada Syndrome) which is related to "Long QT syndrome" Since all ADT drugs have cardiac side effects, including extending the QT period, I was concerned with the risk. After getting the MO and my Electrophysiologist together, they agreed that Orgovyx, being a daily pill, would be safer, since it could be quickly stopped if I started showing distressful side effects. I also took weekly ECGs for the first month to monitor for dangerous changes.
I started 6 months of Orgovyx in the beginning of June 2021, with pre-treatment PSA of 6.6 and Testosterone at 734. I started a regimen of daily walking and an intermittent fasting diet to improve conditioning for treatment and combat ADT weight gain (I had already put on 15 pounds during the pandemic). At my first checkup (5 weeks in) my PSA had dropped to 0.8, and T to 6.1, and had no significant side effects. By September (14 weeks) PSA was down to 0.1 T to 3. By this time I had pretty much lost all libido and had significant, but not complete ED. I also had a collection of minor, intermittent side effects, including muscle cramps in my hands, insomnia, fatigue, bouts of depression and mood swings. I had very few hot flashes or night sweats, just a handful.
After 5 months of ADT PSA was undetectable, side effects continued, with ED now pretty much total, and at my 6 month follow up both PSA and Testosterone were undetectable. Orgovyx was stopped at the end of November.
Because of the diet and exercise, I actually lost the 15 pounds of covid gain, and a few pounds more!
Now the aftermath.
At 6 weeks post-ADT (mid January 2022), my T had nearly completely recovered, to 643, and my PSA was 0.2. While the minor side effects had mostly abated, the libido and ED were still quite profound.
At 3 months (end of Feb) PSA had risen to 0.4, and libido and ED were slowly improving.
Since the PSA had doubled in the 6 weeks between those tests, there was a considerable discussion between my RO and MO as to whether treating me as UIR (vs High Risk) was the right choice, and whether I should go back on ADT. When my opinion was sought, I said that now that I am finally feeling mostly recovered (sexually and otherwise) from the side effects, I was reluctant to go back on ADT unless there was strong evidence to recommend it. Both oncologists said that I fell in a grey area and it was not clear how much I would benefit from further treatment. It was agreed that a close watch on my PSA was needed, but that we would stick with the original plan of 6 months ADT. My next oncologist followup is scheduled for the end of May.
I did not want to wait that long, so I got my PCP to give me another PSA test in mid April (4.5 months). I was quite relieved to see it came out at 0.36, so no continued upward trend in those 6 weeks.
As for side effects, I feel like I have recovered as much sexual function as I am going to recover. It is definitely less than I had pre-treatment, (how much of that is due to ADT and how much to RT is unknowable) and while I am disappointed with that, it is not unsatisfactory.