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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 don't have much to say about Orgovyx because I only took it for 27 days. My Urologist started me on Orgovyx the day he saw me in the office because of what he saw in the scans he ordered before our first meeting. The scans showed him that I had metastasized cancer in the bones and lymph. My PSA was 287 and a grossly abnormal prostate. So recommended I see Oncology and get started with that. Well he is so busy he put off me having a biopsy for several weeks and in that time I figured why go through that procedure when it is known what my condition is. So when the Urologist found out I didn't think a biopsy was needed he cancelled my scheduled hormone therapy and left me without any further treatment. So I started with hormone therapy and it was working because my PSA had dropped down to 27 after taking the Orgovyx. Guess I don't have any say in my own treatment and possible side effects.
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3 ReactionsI Have been on Orgovyx for 17 months, with 1 more month to go. I talked my doctor into this drug vs Lupron since it is a daily drug and should provide a level response (no highs or lows). Additionally, when I take my last pill in April, my testosterone should begin rising soon thereafter. Lupron may hang around awhile before your testosterone starts to rise.
I found it best to take a bedtime. Main side effects: hot flashes and leg pain at night on occasion. Sex drive-none (as expected), emotional roller coaster (cannot watch sad movies! Weight gain. No fatigue--GOOD
Best of luck to others on this thread!
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2 ReactionsRetired boomer 71. Very helpful article and reasonably current thank you. I am G 9, nmCRPC 30 months post diagnosis and after 13 months of ADT plus Erleada and Robo surgery. My numbers are presently good but I am waiting for the other shoe to drop. This article gave me guidance so I thank you for that.
Kujhawk, xlnt article,
thanks for the link.
Here's a link about ADT, includes IADT - https://www.dovepress.com/evolution-of-androgen-deprivation-therapy-adt-and-its-new-emerging-mod-peer-reviewed-fulltext-article-RRU
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1 ReactionNew video by Dr. Scholz discusses INTERMITTENT hormone therapy (ADT):
Until I watched this video, I had no idea that there's 10-20 year data which supports intermittent ADT.
So now I'm planning to take an "ADT holiday" at 12 months.
Of course, I'll continue regular PSA & testosterone tests -- to help decide if I need further testing (mpMRI, PSMA PET scan) and if I should resume Orgovyx.
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1 ReactionYes, prescribed 4 mos short term ADT (SPPORT trial) as part of my Salvage Radiation treatment.
G 9 w/ EPE & PSA .19 after RP; clean margins, seminal vesicles and lymph nodes.
After being on this incredibly helpful site, I have seen all the different ADT recommendations.
If medicne is both an art and a science, I can only hope that my Rad Onc is Michelangelo.
Best to all.
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1 ReactionThat's great news!
I just want to confirm, having Gleason 9 PCa w/ Extraprostatic Extension, your med team only prescribed 4 mos of Orgovyx?
If that's true it seems the docs are all over the chart on ADT use.
Mine was Gleason7 w/o Extraprostatic Extension and the doc is saying two years and now starting to chirp about staying on it with a steady PSA of < .006 for over a year now.
He's not even testing my t level. I may start insisting on the next blood test.
I wish you continued success!
Orgovyx: I have some good news and thought that I would share it.
Salvage Radiation tx together with 4 mos ADT Orgovyx Feb - June 2023.
Following RP Aug 2022 w/ immediate 90 day postop BCR of .19.
Nov 2023: uPSA test undetectable at < .02 and Testosterone 274 (up from undetectable in Mar < 2.5 w/ Orgovyx)
Feb 2024: uPSA test continues undetectable at < .02 and Testosterone 347 (80% of pretreatment tx level).
Extremely pleased; and hoping for continued remission of my G 9 PCa w/ Extraprostatic Extension.
Orgovyx experience was "as advertised": Rapid reduction of PSA and Testosterone upon starting.
Dissipation of ADT SEs 95% (mild to moderate for me; still sucked) 4 - 8 mos after stopping.
We go from PSA test to PSA test, and my PCa is anticipated to raise its ugly head again at some point, but hoping/praying for extended remission and next generation treatments.
Best to all.
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1 ReactionMaverick75:
Thank you; my error.
I should have read your post as primary stereotactic radiation treatment.
Just a bit nervous this morning.
Best to you and to all.