1. < Prostate Cancer

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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 22 8:52am
In reply to @gismo "Good to hear about a faster response once your off of Orgovyx. But in the meantime..." + (show)
@gismo

Good to hear about a faster response once your off of Orgovyx. But in the meantime I am experiencing pain in my leg along with tingling a bit.

Jump to this post

@gismo, are you currently on Orgovyx? Have you talked to your oncologist or nurse about the tingling and pain in your leg?

REPLY
toolbelt | @toolbelt | Feb 13 4:24pm
In reply to @sirheartt "This is all helpful and inspiring. Just started with no side effects to announce and staying..." + (show)
@sirheartt

This is all helpful and inspiring. Just started with no side effects to announce and staying on my health n workout routine. Going to Italy in October and want to be well enough to travel n enjoy. Keeping the spirits up with positive mind set and my strong support of Friends to keep me on track. 1/3 through my Radiation and taking one a day, Orgovyx, to fight this cancer. I owe so much to my lady who has been with me thru this journey. Life is worth fighting for when you have people who Truly Care. You also find along the journey the few who Never really had your back. Gonna Lick this good!

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I went SCUBA diving for two weeks while on Orgovyx, and only 3 weeks after SBRT. It can be done.

REPLY
aiseman | @aiseman | Feb 13 12:37pm
In reply to @ava11 "How much longer you plan to be on Orgovyx?" + (show)
@ava11

How much longer you plan to be on Orgovyx?

Jump to this post

3-7 month more; or 18-24 months total.

REPLY
sirheartt | @sirheartt | Feb 13 12:35pm

This is all helpful and inspiring. Just started with no side effects to announce and staying on my health n workout routine. Going to Italy in October and want to be well enough to travel n enjoy. Keeping the spirits up with positive mind set and my strong support of Friends to keep me on track. 1/3 through my Radiation and taking one a day, Orgovyx, to fight this cancer. I owe so much to my lady who has been with me thru this journey. Life is worth fighting for when you have people who Truly Care. You also find along the journey the few who Never really had your back. Gonna Lick this good!

REPLY
1 reply
gismo | @gismo | Feb 12 10:56am
In reply to @leebeth "My husband has been on Orgovyx for a year, with no side effects. Prior to that..." + (show)
@leebeth

My husband has been on Orgovyx for a year, with no side effects. Prior to that time, he had 4 monthly degarelix injections.
I see the advantage of Orgovyx as being a GnRH antagonist and fewer deleterious cardiac effects associated with the agonists, like Lupron.
Most of the side effects some men experience are related to the low testosterone, and would be present no matter the method for lowering T.
The other advantage is for those men who might not be on ADT forever. Rapid testosterone response upon discontinuing Orgovyx makes that a more attractive alternative.
Lastly, the convenience of taking a pill at home vs the monthly injections of the only other currently available antagonist made this an attractive option for us.

Jump to this post

Good to hear about a faster response once your off of Orgovyx. But in the meantime I am experiencing pain in my leg along with tingling a bit.

REPLY
1 reply
heavyphil | @heavyphil | Jan 29 8:13am
In reply to @mark1952 "Just finishing up 4 months on Orgovyx. Never had a hot flash. Have lost weight, if..." + (show)
@mark1952

Just finishing up 4 months on Orgovyx. Never had a hot flash. Have lost weight, if anything. Very pronounced weakness and loss of strength about a couple weeks in. Joint and muscle pain almost from the start. Restless leg syndrome disappeared about a month in. Lessening of libido almost from the start. With effort and concentration, have managed one orgasm each month that I have been on Orgovyx. Took tadalifil to help night-time urination. Didn't help urination but no other deleterious effects that I could sense. It seems that Orgovyx has caused some stomach cramping and discomfort. Plus, I think it has definitely made my urination more urgent and frequent. Some of the painful twinges in the joints and muscles have been severe but only last 2-3 seconds. However, they made me feel that my joints were at risk of fracture. Until recently, I was an active 73 year old. Orgovyx has made me feel 100 years old. I hope I can rebound. I hope the ADT will prove to be worth it (not sure how I would ever really know...). Think I should have had the gene-based prognosis tools, decipher score, etc. As so many others have said, "Make informed decisions and don't second guess them." Best of luck to you! Stay strong.

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Hey Mark, your side effects from Orgovyx are so different than mine, but as we keep hearing ad nauseum, “we’re all different”…
I also had a Gleason 4+3 unfavorable, treated with surgery and now again with ADT and salvage radiation.
That word “unfavorable” really moves us up a notch - almost to Gleason 8. Taking the Orgovyx, despite the side effects, is the best thing you could have done. Don’t regret it…Believe in it.
Phil

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mark1952 | @mark1952 | Jan 28 7:51pm

Just finishing up 4 months on Orgovyx. Never had a hot flash. Have lost weight, if anything. Very pronounced weakness and loss of strength about a couple weeks in. Joint and muscle pain almost from the start. Restless leg syndrome disappeared about a month in. Lessening of libido almost from the start. With effort and concentration, have managed one orgasm each month that I have been on Orgovyx. Took tadalifil to help night-time urination. Didn't help urination but no other deleterious effects that I could sense. It seems that Orgovyx has caused some stomach cramping and discomfort. Plus, I think it has definitely made my urination more urgent and frequent. Some of the painful twinges in the joints and muscles have been severe but only last 2-3 seconds. However, they made me feel that my joints were at risk of fracture. Until recently, I was an active 73 year old. Orgovyx has made me feel 100 years old. I hope I can rebound. I hope the ADT will prove to be worth it (not sure how I would ever really know...). Think I should have had the gene-based prognosis tools, decipher score, etc. As so many others have said, "Make informed decisions and don't second guess them." Best of luck to you! Stay strong.

REPLY
1 reply
aiseman | @aiseman | Jan 28 3:07pm
In reply to @ava11 "Did you talk your oncologist about Intermittent Hormone therapy?" + (show)
@ava11

Did you talk your oncologist about Intermittent Hormone therapy?

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Yes

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ava11 | @ava11 | Jan 28 2:13pm
In reply to @aiseman "4-10 additional month or 18 -24 months total." + (show)
@aiseman

4-10 additional month or 18 -24 months total.

Jump to this post

Did you talk your oncologist about Intermittent Hormone therapy?

REPLY
1 reply
aiseman | @aiseman | Jan 28 1:40pm
In reply to @ava11 "aiseman, How much longer you plan to be on Orgovyx, since you are handling it so..." + (show)
@ava11

aiseman,
How much longer you plan to be on Orgovyx, since you are handling it so well?

Jump to this post

4-10 additional month or 18 -24 months total.

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