What's your experience with Orgovyx (relugolix)?

My Experience. When I first found out I wes scard sh..less. I read a lot and spent lots of time on discussion groups. I had a second opinion on my biopsy and it was downgraded. So make sure you get a second opinion from a reputable place. Had a PSMA that came back woth no spread outside the prostate. Orgovyx thus far 1 1/2 months in is very good. I'm 74 with Medicare/BC plan 65 and BC RX. My copay is just $15. I have had a few minor hot flashes lasting only seconds. Barely noticeable.
Helpful information might be that I'm Gleason 3+3 and 3+4 in two cores. I take .5 mg of Lexapro, B Complex and Vitamin D daily. I walk my dog about two miles per day and play tennis at least 3 times a week. So far I have not had to slow anything down.
Space Oar and fiducials put in this week. Very uncomfortable for 36 hours but then took my normal walk. Mold and CT simulation next week then on to SBRT a few weeks later.
The hardest part for me became the waiting. Even now, I can get specific dates for the SBRT. This makes it difficult to create a plan for where we will live during the process.
Hope this helps a bit.

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I've been on Orgovyx for almost 4 months now on a 6 month treatment plan. I'm localized, 4+3, .69 decipher, 70. Treatment at Mayo Jax. I started Orgovyx on my first day of SBRT. I asked for a T-check blood work at the 15-day point just to be sure it was working as advertised-- it was. Was having problems sleeping with the hot flashes and some depression. Doc added Venflaxine which has helped significantly. Just had my first PSA check Friday post SBRT. PSA was undetectable! All going well. If the science showed a longer dose of ADT had significant benefit, I'd go longer. However, my RO believes we are being aggressive with the 6 months of ADT so I plan to stop in January.

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Maverick75:
An I understanding your msg: You are having Salvage radiation treatment for BCR together with 6 mos Orgovyx?
Apologies; the acronyms are not always clear to me.
I have my 1st PSA test this morning following salvage tx after prostatectomy. My treatment was 38 sessions of IMRT radiation to the whole pelvic floor and pelvic lymph nodes together with 4 mos Orgovyx, so I am very interested.
Congratulations on the undetectable PSA result.

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No, sorry about the shorthand. My initial treatment (and only treatment thus far) was five fractions of radiation treatment of the entire prostate gland called stereotactic body radiotherapy (SBRT). That was combined with androgen deprivation therapy (ADT) using the drug Orgovyx, which my radiation oncologist started on the first day of radiation treatment. I'll be on that for a total of six months which for me will end early January 2024. My side effects have been manageable. I attribute that mostly to a healthy diet and daily physical activity. Best wishes and please feel free to reach out if you have any additional questions!

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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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That'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!

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