Orgovyx done. What to expect?

Just curious were you diagnosed with Advanced Prostate Cancer because i am on ORGOVYX with APC and its prescribed forever. No off time

I was 77 yo when diagnosed with Gleason 8 and 9 so the protocol was to get 35 radiation treatments and 18 months of ADT (Orgovyx). Being a pharmacist, I dislike long-acting injectables like Lupron. The drug levels go up and down so I wanted to take a pill daily so I would get a steady-state of drugs in my system. Probably not important but the reasoning worked with the insurance company and they approved it.

Good luck with your treatment. Let me know why you are on ADT forever--not heard of this.
Mike

Has anyone completed orgovyx therapy? Satisfied? Side effects? Cost?

@waynebarry, I think you'll appreciate the conversations here:
- Orgovyx done. What to expect?
https://connect.mayoclinic.org/discussion/orgovyx-done-what-to-expect/
- What's your experience with Orgovyx (relugolix)?
https://connect.mayoclinic.org/discussion/the-orgovyx-thread/
Also see these related discussions: https://connect.mayoclinic.org/group/prostate-cancer/?search=ORGOVYX#discussion-listview

Have you completed treatment with Orgovyx or about to start?

I WILL finish my 6 months in 24 days. It has been an easy ride. No weight gain, no muscle loss....but I am at the gym 6 days a week and walking 18 holes 2 days a week. Only a couple minor hot flashes at night. No apparent mental fog or mood swings. With my Part D it costs about $3000 for the 6 months. I am totally satisfied at this point. Going for a testosterone test 1 month after I stop. It will be interesting to see the results. I was 571 before treatment and 14 during treatment.
Oh...the other thing of course is that I thought my radiation oncologist said I would be "unique"....once I saw the written notes it was "eunuch".((Actually I made that story up))

Stay Strong Brother

toolbelt, we all need a laugh, thank you for giving me one. good luck on your journey

We got this Brother

I am 75 and have the same issue. I was on orgovyx for 13 months plus 45 radiation treatments. My T level at start was 410 and two years after ending the treatment my T level is at 123 and seems to be stagnant. No good erections and size seems to have decreased. Doctors don’t seem to have an answer as orgovyx was approved in December 2020 and I started treatment in March 2021. Very few side effects when it was first approved but has lots of them now.

I just finished 6 months of Orgovyx . Still hot flashes etc. How are you feeling? Did you test for T yet? At what time frame since your last pill ? Thank you , still sweating .

I finished Orgovyx a year ago and my testosterone, which was ~550-600 pre-treatment, initially went into the 300s after three months but has dropped every three months since and now sits at 210. The same doctors who told me it's highly likely I'd recover from a short six month course now say I probably won't because the hormones that signal my body to make T are off the charts high but my body isn't responding.

I felt OK even when my T was 280 but once it dropped below 250 the low T symptoms started again. My bloodwork now shows I have the beginnings of metabolic syndrome and they want me to take cholesterol and diabetes meds and get bone strengthening drugs but I don't want more medications that are going to have more side effects so I refused.

I'm thinking of stopping my PSA tests too because I no longer trust my medical team and I went to one of the best cancer centers in the country. I can't imagine a different team would make a difference.

All that said, I'm the only guy in my support group who DIDN'T recover their T to an acceptable level after Orgovyx so I'm probably an outlier.