What's your experience with Orgovyx (relugolix)?

Vit D & Calcium supplements on Orgovyx.

Began 4 mos of Orgovtx tx 5 days ago.

Any advice/recommendations? Orgovyx prescribing info mentions possiblly taking supplements.

Hello,
I started Relugolix October 2021, with a PSA of 1200. Within 6 months my PSA was 0.25 and as of last month it started rising to 0.53. Side effects include occasional sweating, but the worst is the muscle, and joint stiffness. Exercise doesn’t help, and the only supplement recommended by my Oncologist is Osteoflex, which doesn’t help either.
After a bad experience with Lupron, and Zytiga I feel I have been doing better overall. Next month, I will have another Pet scan to see where I am headed. Possibly a stronger hormone with radiation.
All the best to you, hang in there!

Thank you. My Gleason also was 9.

Thank you again. With o
Orgovyx beginning tomorrow and radiation therapy next Friday, I have a bit of trepidation.
Turning 73 in March, and for the last year if I pass my recliner between 1 and 3:00 in the afternoon, it calls a "siren song": Michael it's naptime. so I understand that part of it.
Very much appreciate your support and encouragement.

I just ended a year of lupron and Erleada treatment and Surgery and the fatigue issues and sleep disorder has ceased and I now feel much better. That said, this treatment was not terrible, I was able to drive to UCLA hospital each month ( 1.5 hours each way ) and the treatment successfully reduced my testosterone to 12 and PSA to .01. You have to do whatever you can to cure or control the cancer and the above was super aggressive and successful for my Gleason 9 aggressive advanced castration resistance prostrate cancer. Good luck to you!

"..and fatigue became an issue in the last 10 weeks or so.."
Not ten weeks, ten sessions. 14ish days
I don't think I would have had any trouble driving an hour after that, I don't think it's debilitating to that level. You'll have to see for yourself as your treatment progresses though.

"...Have you noticed any fatigue that you attribute to the hormone therapy?"
Perhaps? it's hard to say for sure. Initially it messed with my sleep so there was that, now that the sleep issue isn't a problem I'm getting through the day pretty well without excess fatigue.
Often, I believe, many of these symptoms we attribute to the meds and radiation may just be us getting older. I'm 61 now and like most 60+ year olds, starting to slow down some. Does the medicine exacerbate that? Maybe? Correlation isn't necessarily causation.
I'll let you know when I stop taking it!

"My wife and I have a (twice delayed) trip planned in April and I'm trying to "guess" if I will feel well enough to travel"
From my experience, I'd keep the plans. You can sleep on a plane! It will be a)something very positive to look forward to and b) a great break from the routine. My RO told me that most people take about a month to start getting back to "normal" so that'd be about right.
I'm assuming you're not referring to something challenging like an African Safari on camel or anything....

"....is a major disappointment for me."
Right there with ya. I will say this though, once I got into the routine, it went by pretty quickly for me. My hope for you is that you have the same experience.

Last 10 days, not 10 weeks.

Thank you for your response I really appreciate your sharing information, particularly such personal information.

I'm reading your response to indicate that you completed radiation therapy, and fatigue became an issue in the last 10 weeks or so. That is of particular interest to me because I will be driving about an hour 15 minutes each way to receive my daily radiation therapy. I'm hoping that I can make the drive through the entire course of Tx, but I can stay over some nights if necessary.

Hormone therapy, which begins tomorrow morning, is what really concerns me. Have you noticed any fatigue that you attribute to the hormore therapy? Do you think that it added to the fatigue of radiation? And do you still have fatigue after radiation ended and with continued Orgovyx therapy? My wife and I have a (twice delayed) trip planned in April and I'm trying to "guess" if I will feel well enough to travel (would be about 1 mo after radiation ends and 3rd/4th month of Orgovyx). My RP was Aug 2022, but my 1st 90 day postop PSA was .19 (repeated 0.18) in Nov, so the needed additional therapy immediately after I have recovered very well from surgery is a major disappointment for me.

I guess I've had both if you consider the radiation I had to the prostate/surgical bed, 39 treatments and still on orgovyx for hormone therapy.

The only thing I really noticed with the treatments is my butt, anus I guess, got sort of sore. Irritated might be a better word. I only had one small bout of diarrhea for about 2 days. At the end of the treatments, say last 10ish days I started to get somewhat tired. I would workout after my morning radiation session but it took a really strong effort to get through those. Then it was a power nap when I got home. It took about 2 weeks before I started to notice improvement after the treatments were over. Now, back to normal as far as I can tell.

The orgovyx is really, really, really annoying. I have very little to no libido and testicles the size of black beans. I had "restless leg" syndrome when I started it and got strong hot flashes several times a day. At about 2 to 3 mos the restless legs disappeared and now at 6 mos I noticed the hot flashes have diminished greatly. I think I only notice a couple a week, usually during the day now. I guess your body gets somewhat used to it.

There are some potential issues with any hormone therapy like raising your cholesterol, blood sugar etc. I haven't had a full blood panel done yet, that's coming in the next couple months. I want this to aid in my decision to continue the hormone therapy or drop it early. I'll post if it shows the orgovyx caused any issues there.

Did not take notice of posting dates. My fault. Does anyone have any experience with the side effects of pelvic floor radiation, hormone therapy and/or the combination of the two together?