Starting Orgovyx - how long for side effects to occur?

@kharlan
I think you got a little bit carried away here.

Genital shrinkage up to 75%, also permanent is just Not how people have experienced it. The shrinkage is not permanent and is not 75%. It’s minimal maybe a half inch average If you have surgery.

Possible heart failure, Well, anything is possible, but after 8 years of being on ADT And hearing from dozens of people that have had it, not one of them had heart failure and died. When I was on Zytiga, I had afib events, which are no fun, Never had it from ADT. Zytiga not ADT also gave me high blood pressure, For which I have to take three pills every day, But ADT has not made it any worse over these years. My blood pressure is actually pretty low normal.

Libido definitely Comes back for almost all the men on ADT once they’ve been off it for a while. There are a few men, Usually older men. Who testosterone doesn’t come back which also results in the loss of libido. At 77 I stopped ADT for seven months, My testosterone started coming back pretty quickly even though I had been on ADT for 7 years. My oncologist and I both figured it would never come back. Had to go back on Orgovyx Because of a genetic problem that requires I keep my testosterone low.

Six years after I started ADT I found I could not get off the floor without pulling myself up on something. I then started going to the gym three days a week. Yes, my muscles deteriorated over time but not that much that I noticed it was a problem for six years. Four months after going to the gym, I was able to get off the floor without pulling myself up. My muscle loss wasn’t all that rapid.

My case is different because I was simultaneously on Abiraterone with the Orgovyx. So I don’t know which, but I had hot flashes starting the end of week 2. I completed the 6 mos intensive treatment with radiation in the middle, January 30. Flashes continued until (I hope) about two days ago. But they were becoming less noticeable.

My understanding based on the continuous volley of questions I fired in a friendly, curious way to the NP, nurses, Docs and staff is that symptoms track to your Testosterone level. When it gets toward zero, your metabolic functions are messed up. Sounds like yo are not there yet. Like others who commented here, exercise is critical to surviving better. Also what you eat, I found myself more sensitive to Carbs and had to watch that.

Without its Testosterone, the body says “what the heck, where is my Testosterone, you’re screwing with my metabolism and hormones, dude.” What I noticed were the flashes, fatigue, intermittent cognitive slowness, and of course, the obvious: Doctors refer to ADT sometimes as “chemical castration,” and I wondered whether my attitude, presence and interests in the opposite sex would change. They absolutely did not. I was and am in recovery, still totally Male in my thoughts and interests. But ability to do anything about it? Zip. Nada. Zero. Limp city. I may write about it at some point. Along the way since I had to have the intensive and definitive radiation for high risk, I got gold pellets placed around the offending gland in a procedure that required, among other things, for me to be in stirrups. LOL. That and the essentially menopause-like effects, including some emotional volatility which for me was being short tempered. It all gained me terrific insight to the opposite sex. I put a box fan near the bed pointed at me on low, because the flashes mostly bothered me at night. Now in recovery mode, (they tell you it takes a couple months or so) some of the short tempered-ness and stuff is on replay. But whatever.

But the capper was the stirrup experience, feet up and wide, buck naked below the waist, a couple of pretty nurses and a tech down there, a higher level tech at my side chatting with me about music preferences. How did I, as an older man who grew up working as a farm hand, who had a family of kids and now grandkids, end up in stirrups with those helpful onlookers? It is a comedy. Having got through it, I learned a LOT.

Bottom line, I believe it tracks to Testosterone level and every man is different both side effects as well as how long things take. It’s very humorous if you let yourself look at it, and a fascinating, occasionally intense, educational experience. Hang in there.

@jeffmarc Thank you for this. Kharlan was very negative. I'm starting ADT with orgovyx tomorrow. Radiation in a couple months(26 sessions) This will affect my wife and I because we will have to move to the area during the week because we don't live close to the hospital. I have to admit that I'm scared because my PCa has spread to my rectal wall(locally advanced) is what they call it I think. My doctors at Stanford are optimistic but I'm still scared how my life may change. I'm 67 and very active. I walk 3 miles every day with my dog and walk 9 holes of golf twice a week. I resistance train with bands and light weights 4 times a week and spend 30 minutes on an elliptical 4/5 times a week. No kids no grandkids so lots of time to do all of this. We have travel plans that I plan on doing. I hope I'm doing enough to go in as healthy as possible. Thank you for your positive response. Any advice would be appreciated.

@jeffmarc Thank you for this. Kharlan was very negative. I'm starting ADT with orgovyx tomorrow. Radiation in a couple months(26 sessions) This will affect my wife and I because we will have to move to the area during the week because we don't live close to the hospital. I have to admit that I'm scared because my PCa has spread to my rectal wall(locally advanced) is what they call it I think. My doctors at Stanford are optimistic but I'm still scared how my life may change. I'm 67 and very active. I walk 3 miles every day with my dog and walk 9 holes of golf twice a week. I resistance train with bands and light weights 4 times a week and spend 30 minutes on an elliptical 4/5 times a week. No kids no grandkids so lots of time to do all of this. We have travel plans that I plan on doing. I hope I'm doing enough to go in as healthy as possible. Thank you for your positive response. Any advice would be appreciated.

@jeffmarc Thank you for this. Kharlan was very negative. I'm starting ADT with orgovyx tomorrow. Radiation in a couple months(26 sessions) This will affect my wife and I because we will have to move to the area during the week because we don't live close to the hospital. I have to admit that I'm scared because my PCa has spread to my rectal wall(locally advanced) is what they call it I think. My doctors at Stanford are optimistic but I'm still scared how my life may change. I'm 67 and very active. I walk 3 miles every day with my dog and walk 9 holes of golf twice a week. I resistance train with bands and light weights 4 times a week and spend 30 minutes on an elliptical 4/5 times a week. No kids no grandkids so lots of time to do all of this. We have travel plans that I plan on doing. I hope I'm doing enough to go in as healthy as possible. Thank you for your positive response. Any advice would be appreciated.

Never got a DEXA and when asked 3 doctors ALL said it wasn’t needed even with a course of 18 months on ADT!!

@jeffmarc Thank you for this. Kharlan was very negative. I'm starting ADT with orgovyx tomorrow. Radiation in a couple months(26 sessions) This will affect my wife and I because we will have to move to the area during the week because we don't live close to the hospital. I have to admit that I'm scared because my PCa has spread to my rectal wall(locally advanced) is what they call it I think. My doctors at Stanford are optimistic but I'm still scared how my life may change. I'm 67 and very active. I walk 3 miles every day with my dog and walk 9 holes of golf twice a week. I resistance train with bands and light weights 4 times a week and spend 30 minutes on an elliptical 4/5 times a week. No kids no grandkids so lots of time to do all of this. We have travel plans that I plan on doing. I hope I'm doing enough to go in as healthy as possible. Thank you for your positive response. Any advice would be appreciated.

The goods news is the radiation treatment kills the cancer. As my oncologist stated, there is no such thing as remission. During the treatments you will likely experience some tiredness and fatigue. I started orgovyx and abiraterone/prednisone roughly the same time as SBRT (radiation) treatments. In all I had 30 treatments to address cancer in my prostate and seminal vesicles.
My experience initially was fatique, loss of labido, light periodic hot flashes, ED, very emotional and depression. The latter was likely due to adjusting to my new normal. The best way to counter the side effects is exactly what you are doing. I've been exercising (weight lifting, bike riding etc.) and it's helped tremendously.
It's an adjustment, but if like me you have a supportive wife, the overall quality of life remains. It gave me a different perspective on life and I'm living it to the fullest. You'll do well, consider it a speed bump.