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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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Calcium citrate, 400mg with 500 IU Vit D, twice a day. Vitamin K2 45mcg twice a day.
Thank you. Much appreciated.
What dosages of D, Calcium and K2 ?
Are you able to recall when side effects occurred? I am 5 days into hormone therapy and have some increased fatigue only, so far.
Waiting/watching for the additional side effects to occur.
Sounds like a challenging course for your H. Hope they stay "tolerable". Best wishes to you both.
My husband (Gleason 8, 45 sessions of RT) has been getting degarelix injections monthly for the last 12 months.
This blocks testosterone the same way as Orgovyx but is less expensive and more painfully administered.
Near zero testosterone has lots of side effects. My husband increased his magnesium supplements to get relief from nightly leg cramps. He takes calcium/vitamin D plus vitamin K2 to protect his bones. His red and white blood cells and platelets are just below normal. Iron won’t help as it is an androgen receptor issue, that is no testosterone.
Hot flashes still a nightly issue as well as daytime. He now abstains from alcohol and layers his clothing to mitigate the hot flashes.
He has 12 more monthly injections to go, but there is no sign of recurrence. Which is why he puts up with the side effects.
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!
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1 ReactionThank 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!
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3 Reactions"..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.