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.

It was about one month before I started feeling anything different on Orgovyx. Hot flashes started at about one month. Weight gain at about two months. Fatigue at about two months. @jeffmarc is correct with the prescription for fatigue is exercise. Keep moving and push through the fatigue by doing something active or go to the gym, you'll feel better over all.

Now four months on Orgovyx and the hot flashes seem to be reducing in frequency. Hope it stays that way.

Normally your libido goes away completely and may never return but with Orgovyx you probably have the best chance and your genitals probably will shrink to a fifth of there normal size and that will never come back.

@ddavid
I noticed you have intraductal and cribriform. I was researching treatments for those combinations on Monday. Two people came into the ancan.org Weekly advanced prostate cancer online meeting with the same problem. I thought maybe radiation and brachytherapy might work but studies have shown it is not effective with that combination of problems. Actually, there were no studies at all that showed an effective treatment, if both of those issues were found. Hopefully the clinical trial you are in is coming up with some new ideas on treating it.

Good to see the side effects of ADT are getting better for you.

@kharlan
The genitals don’t shrink nearly the 80% you say. At best 1-3 cm or 25%. Regular use of Cialis and a penis pump can prevent or reduce the shrinkage.

Where do you get your facts?

@jeffmarc 2-3 from protectomy or eventually from radiation that’s not including the ADT

@jeffmarc
Thank you for the information. I was not aware of the subtleties related to having both cribiform and intraductal. I am curious to learn more. And I am getting ready to make a post about seeking a second opinion on my situatuin and treatment plan. I am in Seattle and go to the Fred Hutch Cancer Center, generally regarded as the best in the Seattle area. However, after seeing many more posts by others and you relating to their ADT treatment plans being multiple years makes me think I may be at some risk. My GU oncologist thinks I should do nine months of ADT, then go on an ADT holiday until the PSA numbers start to rise. While I enjoy being freed from the effects of ADT. I'll take the near term nuisance of ADT to get more years above ground.
Also the clinical trial is only following my second round of ADT with Lupron, Abiaterone and a round of radiation. It does not explore any new treatment options.

@ddavid
UCSF did a conference on cribriform and intraductal. They actually said that if you had intraductal There was a high percentage chance you also had cribriform. I found this particular one hour conference to be really informative. Here’s a link to it so you can listen to it yourself.
https://www.urotoday.com/video-lectures/a-journal-club-for-patients-with-prostate-cancer/video/mediaitem/4452-unfavorable-histology-classification-aims-to-reduce-unnecessary-treatment-journal-club-jesse-mckenney-cornelia-ding.html
They didn’t discuss in depth what treatment would be useful if someone had both, A search of the Internet’s AI products can give you an idea of what the current state of the medical community is on this problem.

@jeffmarc
Thank you very much for the link. I appreciate you taking the time to pass that along. I'll listen and do more research.
Are these doctors that give these seminars generally open to people asking them questions about their research?

@ddavid
They are UCSF doctors so you could go there and see if you can talk with them. You could get a second opinion from those Medical offices.