Hi jenora. A belated welcome to our forum. Somehow I missed adding you to the G9 Crew list. You're on there now, so you can look at the group and see a lot of links to people's posts. Wherever I could find them, I've entered links to the introductory post people have made. It's organized in 3 sections, G10, G9 5+4, and G9 4+5, then by diagnosis date within each group.
The G9 thread is to help us find each other for support, due to the somewhat unique concerns of the G9-10 folks.
Here's a link to that thread:
The Gleason 9 Crew -- Part 2, continued.To your specific question, the answer seems quite variable. Your testosterone should begin recovering, and that rate is very hard to predict. Mine came back quite quickly after 3 years on Lupron and Casodex; six months after the effective period ran out for my last Lupron shot my T was already back to the bottom end of normal. Some never recover. Very hard to say. Age seems to affect it, perhaps strongly.
My hot flashes diminished, though persist at a rate of about
2 per day, and 2 at night that still wake me up. The relentless fatigue... relented. That helped me tremendously. My mental stamina returned, and I can drive all day now. For a while, in less than 2 hours I'd be wiped out and needed a nap. The memory glitches persist, but I am also aging so not sure if it's fair to blame the Lupron.
Sexually, drive is back to about
1/3 of what it was. Ability nearly normal. The boys shrank a lot (to maybe 1/4 original size and became "mushy", like somehow empty), and while they've now firmed back up, they haven't regained much size. So what, eh?
Overall, I'm pleased to be off of hormone therapy. It will be most disappointing if I ever have to go back on it, but I will if necessary. We G9 folks can never say never...