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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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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 ReactionsThank 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.
Thank you. My Gleason also was 9.
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 ReactionVit D & Calcium supplements on Orgovyx.
Began 4 mos of Orgovtx tx 5 days ago.
Any advice/recommendations? Orgovyx prescribing info mentions possiblly taking supplements.
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.
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.
Calcium citrate, 400mg with 500 IU Vit D, twice a day. Vitamin K2 45mcg twice a day.
Side effects of hormone therapy:
No libido, immediate, continuous
Hot flashes, immediate, still several times day and night
Lower red blood cell count, lower platelets, first blood count at 3 months and continues
He has had monthly degarelix injections for 12 months and has a year to go.
Blessings to you!
I guess everyone is different, but, I've been on orgovyx for 7 mos now.
No libido...
Hot flashes have diminished in both frequency and depth for lack of a better word, I get 'em about once every other night now.
The leg "cramps" I'll call it restless leg has been gone for a couple months.
Haven't had a full blood test in a while, coming soon.
I guess everyone is a little different in responding to these drugs.