What's your experience with Orgovyx (relugolix)?

Posted by web265 @web265, Jun 7, 2022

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?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@pbmurf

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.

Jump to this post

Sorry about the typeo's

REPLY

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.

REPLY
@maverick75

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.

Jump to this post

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.

REPLY

Maverick75:
Or was this your primary treatment (radiation) for the prostate cancer?

REPLY
@michaelcharles

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.

Jump to this post

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!

REPLY

Maverick75:
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.

REPLY
@maverick75

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!

Jump to this post

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.

REPLY
@michaelcharles

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.

Jump to this post

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!

REPLY
@web265

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!

Jump to this post

Yes, 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.

REPLY

New 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.

REPLY
Please sign in or register to post a reply.