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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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Orgovyx recommended due to:
Faster Testosterone reduction.
Better cardiac side effect profile.
Quicker Testosterone recovery post treatment.
However, Orgovyx can be costly.
Other hormone treatments such as Eligard are highly regarded and might be less costly.
I am in my 3rd week of Orgovyx, with minimal side effects so far; some warm flushes and a bit of feeling "off", which may be diminishing.
Good luck with your decision and treatment.
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2 ReactionsMy husband has been on Orgovyx since October of 2021. He loves it as it is much more convenient than monthly injections. I am not a fan of GnRH agonists so his choice was degarelix or Orgovyx. No side effects and his testosterone has always been
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1 ReactionWelcome @artis1301, I moved your question about Orgovyx to this existing discussion:
- What's your experience with Orgovyx (relugolix)? https://connect.mayoclinic.org/discussion/the-orgovyx-thread/
I did this so you can read previous posts and connect with others easily like @web265 @philnob @leebeth @michaelcharles @edva1943 who can share their experiences.
Had radiation treatment in 2009. Cancer back, considering Hormone Therapy called Orgovyx. Any info/feedback on this treatment?
I was on active surveillance for three years. When PSA started rising again (6.4) and a third biopsy showed PC becoming more aggressive, doctors recommended treatment: six months of Orgovyx, and Cyberknife. The first few month of hormone treatment weren't bad, but in months 4, 5, and 6 hot flashes became more intense, and muscle weakness much and fatigue more noticeable. Hot flashes and weakness continued for about two months after treatment, with sleep difficulties. At the end of treatment, PSA was 0.03, and T was 3. My labs 10 weeks after treatment showed PSA at 0.13, and T back up to 255 -- close to pre-treatment levels. So everyone is quite happy with the results so far. The doctors said that Orgovy has a faster recovery, which seems true. I'm 79 y.o.
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2 ReactionsI 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.
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!
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.