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How long have you been on Orgovyx (relugolix)?
Hello All:
I am asking for members to tell me how long they have been on Orgovyx. My prostate was removed (Gleason score of 9) and two years after removal my PSA numbers began to rise to .9. Scan did not detect any cancer. Oncologist put me on Orgovyx because I cannot have radiation. PSA went back to < .01. Then I went off it for about 6 months and my PSA went back up to .14. My oncologist told me to go back on Orgovyx. I want to know of others on this forum who have had similar experiences and how many times they have gone on and off Orgovyx. Merry Christmas!
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@lsk1000
Nubeqa has almost no side effects and can keep your cancer controlled for years. It’s the one drug you shouldn’t cut back on.
In my case after 14 years, I started taking it and two years later I’ve been undetectable the whole time. The drug that’s causing you problems is the ADT drug not Nubeqa.
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2 ReactionsI absolutely considered that, but there were opposing considerations. Several years prior I didn’t experience symptoms to any noticeable degree with Lupron and Eligard over a two year period. PSA went to undetectable. Well afterwards for whatever reason I started to feel tired and dizzy. My initial reaction to Orgovyx only was fairly neutral. I felt like my regular shitty self - low energy and dizziness. When Nubeqa was added at 2 doses a day I had a very difficult two weeks with greatly elevated side effects. If one dose of Nubeqa gets PSA to near zero then it’s doing its job. If not, I go to 2x a day.
Plus, at 1x a day, if ever the $2,000 Medicare Rx cap is lifted I’ll have a supply in reserve.
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2 ReactionsMany responses can be quoted as limited or no side effects of NUBEQA...I am on quarterly Lupron injections and the standard dose of NUBEQA. It was a very short period of time before I started to feel like when I had my initial diagnosis of an aggressive Stage3 prostate ( spring bloodwork no issues, 6months later Gleason scores of 9+ in 3 quadrants). I was immediately put on Eligard and 1 month of radiation and brachytherapy beginning in 2020. 2024 my PSA started a steady but slow rise (0.17-1.24)prompting a PSMA, results showed some metastasis to my hip/lower lymph/tailbone. The prostate is completely clear...I will say this time around I feel I am in better shape, 60# less and have been exercising more but FEEL WORSE, and i am not driving a daily 125mi commute and working all day. Granted I am 4 years older but I still think the achy feeling, fatigue and general lack of motivation is far worse than before. Not a fan.
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1 ReactionI’ve been on Orgovyx (and Nubeqa) for just about a year.
High volume mets to bones and lymph nodes. Started out PSA 136 Dropped to 0.015 in three months. After about six months, it’s bumped up on an increasing curve to 0.58. Getting a little nervous.
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1 ReactionThe reason the drug is given 2x per day is due to its effective half life, It may be better to take a half dose 2x per day. Doing so without the knowledge or the tacit approval of the medical oncologist (MO) is imprudent.
CAUTION: Drugs with XL or SR should NEVER be split because they dissolve and predictably become bioavailable over time, typically 24 hours. They were developed for patient convenience but also with the knowledge that compliance drops with added daily dosing.
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2 Reactions@tazman482
It’s really disappointing to hear you what that doctor did to you. Therapy like Your cryogenic procedure have not been proven to be effective over the long-term. If you had surgery or radiation, as the initial procedure, you probably would not have become stage four, At least for many more years if it wasn’t effective.
This should be a warning for other people reading your message. Don’t rely on the doctor using focal therapy being the final solution. If your cancer comes back, get it treated properly don’t go for another focal procedure. As I already said, those procedures have not been shown to be effective over the long-term.
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1 Reaction@herbertlancaster
Have you had SBRT radiation to your bone mets and lymph nodes? Getting on the drugs works real well, but not having the bone mats treated is a long-term issue as your PSA may be showing.
Your PSA is high enough to get another PSMA PET scan to see what’s going on.
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2 Reactions@rnpalarino1, you might also find these related discussions helpful:
- Orgovyx Holiday https://connect.mayoclinic.org/discussion/orgovyx-holiday/
- Anyone take a Treatment Holiday? Intermittent use of ADT (hormone Tx)
https://connect.mayoclinic.org/discussion/anyone-take-a-treatment-holiday-intermittent-use-of-adt-like-orgovy/
- Who is a good candidate for Intermittent ADT? https://connect.mayoclinic.org/discussion/who-is-a-good-candidate-for-intermittent-adt/
@colleenyoung Thank you.
Stage 4 oliogiomastic. Surgery recurrence Gleason 9 . Oncologist prescribed 2 yr Oorgovyx/zytiga. Nice immediate psa drop to undectable. Progressive lethargy/fatigue. 21 months in I couldn’t do it any more . Discovered a protocol from MD Anderson for intermittent adt. Mr oncologist concurred with reservations.10 month undetectable since started holiday. Energy improved some testosterone is around 125.testing psa monthly scans @ 6 mo intervals. Not every member of care team is happy but quality of life is better.