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.

kvk | @kvk | Feb 28 1:56pm
In reply to @kvk "I have been taking Orgovyx pill form for 4 months and a week. I started the..." + (show)
@kvk

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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I would also like to add that I'm experiencing lots of muscle cramps in the upper stomach and they seem to be more frequent and move from 1 muscle to the next. More noticeable the last 3 weeks. I suppose this is also Orgovyx related and I hope it gets better cause doc wants me to do 24 months of Orgovyx and I'm 3 weeks into the 4th month.

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pfg | @pfg | Feb 28 2:04pm

Thanks for the reply. I would really appreciate your workout routine.
Thanks
Paul

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1 reply
heavyphil | @heavyphil | Mar 1 7:45am
In reply to @mccannr "I'm gleason 9, no mets. I've been on Orgovyx just over a month. If I'm exhausted,..." + (show)
@mccannr

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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Yup, sounds about right….add all that to a raging appetite and a craving for sweets which I never had.
I was on it for 6 months, exercised, worked in the yard, no weight gain, etc….but this first month off of it has been the worst! Age 70 - No energy, extreme fatigue and can’t push thru it to work out like I did before; even gained a few pounds - less than 5 but still….
So I am hoping it’s some sort if cumulative effect that’s finally hitting me now and will soon reverse as my T rises. Hang in there mccann, gettin old ain’t for sissies and ADT is no picnic!😩

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1 reply
larryf954 | @larryf954 | Mar 1 9:11am

I am 2 months post Orgovyx & Zytiga and fortunate to say my testosterone has almost risen to my levels before I began treatment. I’m at 550ng and I started at 633. I can feel that my strength has significantly increased and my doctor commented that you’re living the benefits of it vs Lupron and others. At the age of 70, the return of testosterone is probably more noticeable than had I been younger. Most importantly my PSA in these early days has remained undetectable. Wishes that everyone has a soft landing such as mine.
Thankful 😌

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1 reply
mccannr | @mccannr | Mar 1 9:23am
In reply to @heavyphil "Yup, sounds about right….add all that to a raging appetite and a craving for sweets which..." + (show)
@heavyphil

Yup, sounds about right….add all that to a raging appetite and a craving for sweets which I never had.
I was on it for 6 months, exercised, worked in the yard, no weight gain, etc….but this first month off of it has been the worst! Age 70 - No energy, extreme fatigue and can’t push thru it to work out like I did before; even gained a few pounds - less than 5 but still….
So I am hoping it’s some sort if cumulative effect that’s finally hitting me now and will soon reverse as my T rises. Hang in there mccann, gettin old ain’t for sissies and ADT is no picnic!😩

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Thanks for the encouragement.

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mccannr | @mccannr | Mar 1 9:24am
In reply to @larryf954 "I am 2 months post Orgovyx & Zytiga and fortunate to say my testosterone has almost..." + (show)
@larryf954

I am 2 months post Orgovyx & Zytiga and fortunate to say my testosterone has almost risen to my levels before I began treatment. I’m at 550ng and I started at 633. I can feel that my strength has significantly increased and my doctor commented that you’re living the benefits of it vs Lupron and others. At the age of 70, the return of testosterone is probably more noticeable than had I been younger. Most importantly my PSA in these early days has remained undetectable. Wishes that everyone has a soft landing such as mine.
Thankful 😌

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Good to hear

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chippydoo | @chippydoo | Mar 1 10:37am
In reply to @gismo "Yes I have spoken to both the pharm. and doctor. I have been told that muscle..." + (show)
@gismo

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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Wondering if CoQ10 might help. I take a statin and was experiencing leg and hip pain and was told CoQ10 could help. Tried it and it did. Lupron and Orgovyx mess with the liver to some degree.

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johnernest | @johnernest | 6 days ago
In reply to @pfg "Thanks for the reply. I would really appreciate your workout routine. Thanks Paul" + (show)
@pfg

Thanks for the reply. I would really appreciate your workout routine.
Thanks
Paul

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Sent workout to your email
Stay strong!

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