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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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After posting my question here, I found a thread at inspire.com, evidently the message board for the "ZERO Prostate Cancer Support Community", titled, "Orgovyx Side effects and when they kick in".
This search should take you there if interested: "site:inspire.com Orgovyx Side effects and when they kick in"
My take from the messages there and the very helpful replies I received here is that the odds are very good I'd be fine to start the Orgovyx ahead of my trip, recognizing that everyone is different in their side effects, both in whether and when they show up.
I am inspired to increase my exercise regimen, as the benefit from that is the one very consistent message throughout.
Thanks heavyphil, akiwi, toolbelt, and callibaetis---best to you all.
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2 ReactionsI’ve been on it for 2 months. Only hot flashes 2or 3 a day after about 2 weeks. No other problems. Walk about 2 miles every other day and weight machines in between. Take Woman’s 55 and older pills has 400 mg of calcium. Just hope it’s slowing down the cancer growth.
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1 ReactionTry taking Tylenol PM, it worked for me. I was getting maybe 3 hours of sleep, Dr. said try the Tylenol PM and it works. I am off the Orgovyx for 2 weeks now and sleep has not been an issue for a couple of months now
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2 ReactionsFolks that have BPH need to be cautious with OTC sleep as many contain antihistamines such as diphenhydramine. If a fella is having a hard time peeing, antihistamines may clamp down on the bladder neck and make it harder to get going.
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1 ReactionThanks, bud! Will give it a try.
An interesting journey
Had MRI on August 20 found cancer growing into vestibule.
Biopsy on Sept 28. Gleason of 10. Started ORGOVYX. Urologist visits Oct 15 and Nov19. Had lab test to see if it was working because I had no side effects. Report said unable to detect testosterone. PSMA pet scan Dec13 “No sites of distant metastatic disease. No Ossetian matastases are identified.”It works! Jack B
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5 ReactionsIt certainly does work but in my case side effects were delayed by about 2 months.