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What's your experience with Orgovyx (relugolix)?
Mods, if you think this redundant, please move or remove. I thought it might be helpful to have an orgovyx thread similar to the lupron thread...
Hello all, I've been reading a lot on this board, posting a little, since my discovery about a year ago.
PSA 11 at discovery 13 just prior to RP, Gleason 4/3, 8 of 12 cores, RP in Sept of 2001.
Margins clean, right pelvic lymph removed & tested clean, minimal invasion in blood vessels and nerve tissue.
PSA 3 mos later <.2
PSA 3 mos later 0.039
PSA 3 mos later 0.091 off to the radiation oncologist.
PSMA PET CT showed nothing.
Orgovyx prescribed and just had my markers inserted and starting radiation in about a week (40 sessions)
My Orgovyx experience so far...about 10 days in...
No particular weakness or fatigue so far, but, hot flashes and "restless leg" at night which is really hurting my ability to sleep.
I work out four days a week and run 2 miles a day after workout. I haven't noticed any weakness yet, seem pretty much the same.
Has anyone discovered any supplements or come across any research as to the restless leg issues and hot flashes? or more to the point, any way to minimize/mitigate? I'll of course talk to the docs on this but I'm looking for something natural, I'd prefer not to get into the "swallow the spider to catch the fly" medicinally.
I've also been taking it at 9am(ish), anyone notice any difference taking it at different times of the day?
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NOT HERE---can't even message doctor----IT glitz---and the doctors here use a different EPIC than their counterparts in the same Health Care System of a major University in a larger town
AND CAN NOT SEE EACH OTHERS FILES (yes, even with Care Everywhere) and I was the first one to try to do some surgeries in one and some in the other and it just was not possible...even med auths for PSMA PET CT could not cross over and we all waited weeks until someone figured that out----staff swears that is not possible but INS would not grant auth in other location...and it never helps to get a contraindication for an anti-biotic for a Fusion Biopsy "this will kill you, who wrote this" - Pharmacist---and then when you switch to the big big big UNIVERSITY practice--they do the same....and same Pharmacy, diff Pharmacist on duty stops it at the window again...slows down the appt////then they have wait 8 days to tell you have the worst results possible (after I called them in AM and they called back at 445.....no rush for them....(I heard prostate cancer Gleason 9's does not wait)
As a GmRH antagonist, the cardiac profile of Orgovyx is superior to that of the agonists.
All testosterone lowering drugs, and orchiectomy, can cause cardiac issues.
I am glad you were not on a long term injection of Lupron. That would have been very problematic! At least Orgovyx is quickly cleared.
With a Gleason 9, you do need to be on some type of ADT. Perhaps your solution will be to take estrogen with it, and that may balance the side effects.
Ii think you need to find the best center that specializes in prostate cancer. Mayo in Rochester is top notch if you can get there.
You need to work with a team that knows how to handle your complex situation.
Best of luck to you!
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1 ReactionIm due to start hormone injections soon since the PSA level is now 5 after surgery 4 years ago
The cancer has spread
Which treatment is suggested
Pills or 3 month or 6 month injections.
Layperson reponse: Both injectable Eligard or oral Orgovyx are recommended therapies. Insurance coverage may be more comprehensive for Eligard (Medicare Part B and Medicare Supp, if applicable) vs Orgovyx Tier 5 Medicare Part D coverage. I am beginning 4 mos of Orgovyx Friday, with 38 radiation txs beginning Jan 13. Orgovix has a slightly better cardiac risk profile to Eligard (think 3% vs 6%, not positive). Obviously, choice is yours to make with your MDs. Good luck.
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Appreciate your post; I begin Orgovyx Friday, and radiation Jan 13. I was hoping to find some Pt experiences with Orgovyx, so thank you and here's hoping your recovery continues to be relatively tolerable.
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?
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.
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2 ReactionsThank 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.
Last 10 days, not 10 weeks.
"..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.