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.

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?

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

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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.

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Moderator
Colleen Young, Connect Director | @colleenyoung | 6 days ago
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.

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

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gismo | @gismo | 4 days ago

Yes I have spoken to both the pharm. and doctor. I have been told that muscle and joint pain occurs in 30% of people on orgovyx. The tingling, I was told is probably due to the 28 radiation therapy treatment because it can cause "radiation-induced neuropathy," The tingling goes away after a few steps...not so bad. Search muscle pain with orgovyx.

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osanab69 | @osanab69 | 1 day ago
In reply to @rrk25 "I will be finishing my 6 months of Orgovyx in 8 days. Luckily I got a..." + (show)
@rrk25

I will be finishing my 6 months of Orgovyx in 8 days. Luckily I got a grant for it and my cost is zero. I was also on Erleada at the same time and was in a study for that and also had a zero cost, I stopped Erleada when I developed a full body rash they would not go away for a month.

Orgovyx-PSA went down from 40 to less than .01 very quickly I have hot flashes, gained some weight, lost a lot of muscle, just in the last few weeks started to have joint pain in my already bad knees, but the mental issues have been the worst. Hard to explain what was happening but emotionally I was all over the place, I am forgetting things, have to really concentrate on what I am doing. But it did its job before and after my surgery and hopefully I will recover quickly. In the end I am glad I chose Orgovyx over Lupron.

I still did construction work almost every day but there where some days that I had to take off

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I’m 76 and on Orgovyx for about a month. My peripheral neuropathy is much worse and my chronic prostatitis is much worse. Hard to sleep with the pain.

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kvk | @kvk | 1 day ago
In reply to @ragbrai50 "After posting my question here, I found a thread at inspire.com, evidently the message board for..." + (show)
@ragbrai50

After posting my question here, I found a thread at inspire.com, evidently the message board for the "ZERO Prostate Cancer Support Community", titled, "Orgovyx Side effects and when they kick in".
This search should take you there if interested: "site:inspire.com Orgovyx Side effects and when they kick in"

My take from the messages there and the very helpful replies I received here is that the odds are very good I'd be fine to start the Orgovyx ahead of my trip, recognizing that everyone is different in their side effects, both in whether and when they show up.

I am inspired to increase my exercise regimen, as the benefit from that is the one very consistent message throughout.

Thanks heavyphil, akiwi, toolbelt, and callibaetis---best to you all.

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I have been taking Orgovyx pill form for 4 months and a week. I started the Orgovyx three weeks before the 45 radiation treatments. I have lots of hot blocks, not flashes as they last 5 to 10 minutes. I am forever tired and have gained 30 lbs witch no one said anything about and I break down crying at any little thing, I never exercised before but my job I walked about 3 miles a day. I go back to work on 3/10/25, I'm hoping that will change this tired, sweaty cry baby back to form. I hadn't cried since I can't remember the last time I cried before this happened. I sounds like exercise is the key thx ragbrai50.

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1 reply
johnernest | @johnernest | 1 day ago

I have been on ADT ( Trelstar injections and Nubeqa) for almost 6 months now. I have hot flashes and extreme emotions at times (crying). The only thing that helps me feel normal is exercise, I walk and lift weights at least 5 days a week. Even with my exercise, I still gained about 12 pounds. Not having any testosterone is not normal and is hard to deal with. If you can stay as active as you can, it helps a good deal. If I sit around and don’t do much for a day or two, the side effects start to set in and I will feel terrible, both physically and mentally.

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1 reply
mccannr | @mccannr | 16 hours ago

I'm gleason 9, no mets. I've been on Orgovyx just over a month. If I'm exhausted, can't sleep , can't fine the word or have any of the multiple symptoms that I used to blame on my age (75) I wonder, "is it the orgovyx?", definitely lost libido, which use to be strong. I have always been active. My radiation oncologist has banned bike riding, and I have had to cut back on how much I can do, but physical activity helps. Moffit Cancer and the local Y have a pickleball for cancer survivors program called "project rally" 🙂

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pfg | @pfg | 16 hours ago
In reply to @johnernest "I have been on ADT ( Trelstar injections and Nubeqa) for almost 6 months now. I..." + (show)
@johnernest

I have been on ADT ( Trelstar injections and Nubeqa) for almost 6 months now. I have hot flashes and extreme emotions at times (crying). The only thing that helps me feel normal is exercise, I walk and lift weights at least 5 days a week. Even with my exercise, I still gained about 12 pounds. Not having any testosterone is not normal and is hard to deal with. If you can stay as active as you can, it helps a good deal. If I sit around and don’t do much for a day or two, the side effects start to set in and I will feel terrible, both physically and mentally.

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Have you notice much of a decline in strength? I have been on lupron for 14 months now and weight training has taken a big hit. I still go but the weight I use now is about half of what it was a year ago.
BTW. 69 years old
Paul

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1 reply
johnernest | @johnernest | 13 hours ago
In reply to @pfg "Have you notice much of a decline in strength? I have been on lupron for 14..." + (show)
@pfg

Have you notice much of a decline in strength? I have been on lupron for 14 months now and weight training has taken a big hit. I still go but the weight I use now is about half of what it was a year ago.
BTW. 69 years old
Paul

Jump to this post

Fortunately, I have not lost any significant strength, just had to back off frequently of workouts to recover completely. I have split my weight workouts into specific muscle groups over 4 days with Wednesday and weekends for rest or just walking. I work each muscle group very hard over the 4 days. I do have more aches and pains than before ADT. The only thing different about my workouts is mental, I have to stay really focused and positive. Let me know if you want my lifting routine

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