Orgovyx side effects and handling them

Thank you. I was trying to understand why you've been on Orgovyx. Perhaps because of Stage 4. I was early Stage 2 when started on Orgovyx, and had SBRT two weeks later. My oncologist indicated that I may be off ADT after 8 or 12 months.
I want to be off if possible after six months. My decision will be informed by the experieñce of others like you -- I now think the stage is more critical than PSA at time of diagnosis. (Your PSA between 3 & 4 is lower than mine (7.9 Nov 2024, 10.6 Jan 3025). I was Gleason 8 (3+4), no metastasis.

Erratum: My 2nd PSA test was in Jan 2025.

Hello, well I just finished 44 radiation treatments on May 21st. Started Orgovyx on December 5th, so just over 6 months now. Doc says I’ll do 18 months of Orgovyx. I’m a Gleason 8 and PSA was about 14, with seminal vesicles invasion. Orgovyx providing hot flashes, and has totally changed my private parts. And maybe effected my coronary problems.. seeing cardiologist for test tomorrow. Also really bad body, leg aches to the point I need a cane to walk on occasion. The radiation side effects were brutal for me. Still serious urination pain and urgency. Using 6-10 pads a day to catch all the pee I can’t control. The cramps I had with bowl movements brought tears to my eyes. Thank God that has passed. The hot flashes are controlled with a small powerful fan I got and as soon as the flash starts you can shut it down in a minute with the fan. Keeping positive and wishing everyone here a complete recovery. Stay strong and never give up…. Fight fight fight…. Ken

I have some fatigue but find it mostly mind over matter and push myself to get out on my bike and usually feel better afterwards. 1 hot flash in 5 months feeling blessed there. Sleeping soundly through the night is my biggest side effect even with prescription sleep meds. Picking up my last bottle of meds today. Will be glad when it is over and start feeling like my old self again. Seriously, it wasn't that big of a deal for me.

I have started my 6th and hopefully final month on Orgovyx. I'm noticeably weaker despite exercising and light weight lifting and am so looking forward to ending my treatment regimen and regaining some strength. Sleep has been a problem for me too. I've had hot flashes but they've been manageable. It's a great drug for PC but going without it is even better when it's safe to stop.

For sleeping ask Dr. about 2 Tylenol PM, made a big difference for me. Went from sleeping 2 hrs to 6 or more. I was also on it for 6 months, my strength dropped like a rock even after and has taken a while to recover. Doing PT now 5 months later to improve leg strength and its working.

Thanks for the info. PT is a good idea. I'll also try the Tylenol PM but I already take 2 drugs to help with sleep, Trazodone and Gabapentin. I still have my prostate and it's not very big. Prior to Proton treatment, I always slept through the night without having to get up to use the bathroom. No more. Every night I am now up 2-3 times for that, and on occasion more. I'll ask my doc about that but honestly I was informed of that likelihood before I started treatment. I just wish I understood better why that happens and whether there's any hope for a return to my prior sleeping state over time, or after I've stopped Orgovyx for some time.

There are drugs that really help a lot with these problems of having to get up at night.. I take Myrbetriq and it not only allows me to sleep through most nights without getting up, it helps a lot to reduce incontinence during the day as well. Must admit I do get up once some nights.

There is a second drug that works the same called Gemtesa.

This is the type of thing I asked my urologist about, Contact yours and ask If you can try it.

Thanks, Jeff! I will look into both of these drugs.