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.

chippydoo | @chippydoo | 10 hours ago
In reply to @brian5837 "Just wondering if those of us on Orgovyx would relay if they've found any better times..." + (show)
@brian5837

Just wondering if those of us on Orgovyx would relay if they've found any better times of day to take it and, if so, what time is that? They say to take it around the same time every day and I have been having difficulty adhering to my 2 p.m. start time plus wondering if earlier or later would help with the hot flashes that I'm experiencing mainly at night. Thanks, all.

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I minor flash in 14 weeks. Wondering if being low T in the first place actually helped. Started at T250.

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myash | @myash | 8 hours ago
In reply to @vircet "@myash What was your PSA and Gleason Score when you started treatment? I read in another..." + (show)
@vircet

@myash What was your PSA and Gleason Score when you started treatment? I read in another discussion thread that for Gleason 8 or higher, ADT is for 18 months minimum. My PSA was 20.06, Gleason 7 (3+4), my oncologist said we would see if could be off Orgovyx after 8 months or a year (I am just on my 5th week). I understand you intend to discontinue Orgovyx after two months following your last radiation. I wonder if it's not too soon?

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Our numbers are quite similar. My PSA was 19.9
My Gleason was 3+4. I have 8 more radiation treatments. I do one a day. I am supposed to do the Orgovyx for 6 months. I’ve done 3 so after my last treatment I will have a little less than 3 left. Of course that could change. My PSA went from the 19.9 to 5.7 after about the first month. My testosterone is about gone right now.

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myash | @myash | 7 hours ago
In reply to @brian5837 "Just wondering if those of us on Orgovyx would relay if they've found any better times..." + (show)
@brian5837

Just wondering if those of us on Orgovyx would relay if they've found any better times of day to take it and, if so, what time is that? They say to take it around the same time every day and I have been having difficulty adhering to my 2 p.m. start time plus wondering if earlier or later would help with the hot flashes that I'm experiencing mainly at night. Thanks, all.

Jump to this post

I take mine between 8:00 and 9:00pm. Only reason is I’m more consistent that way. I put a reminder on my phone. And I’m getting several hot flashes a day. Plus it sometimes messes up my bowel activity. 💩

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1 reply
brian5837 | @brian5837 | 6 hours ago
In reply to @myash "I take mine between 8:00 and 9:00pm. Only reason is I’m more consistent that way. I..." + (show)
@myash

I take mine between 8:00 and 9:00pm. Only reason is I’m more consistent that way. I put a reminder on my phone. And I’m getting several hot flashes a day. Plus it sometimes messes up my bowel activity. 💩

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Thanks. Do you think taking it at that time is affecting your sleep? That’s what would concern me.

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2 replies
myash | @myash | 5 hours ago
In reply to @brian5837 "Thanks. Do you think taking it at that time is affecting your sleep? That’s what would..." + (show)
@brian5837

Thanks. Do you think taking it at that time is affecting your sleep? That’s what would concern me.

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I’m a bad sleeper anyway so I’m not sure if it’s affecting me. I take sleep meds also.

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vircet | @vircet | 5 hours ago
In reply to @brian5837 "Thanks. Do you think taking it at that time is affecting your sleep? That’s what would..." + (show)
@brian5837

Thanks. Do you think taking it at that time is affecting your sleep? That’s what would concern me.

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What a coincidence that @myash and I take Orgovyx approximately the same hour.
I am a good sleeper; the hour I take meds doesn't affect my sleeping pattern.

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boniyabes | @boniyabes | 2 hours ago
In reply to @myash "Hi, my first question is did you have your prostate removed before it had spread? The..." + (show)
@myash

Hi, my first question is did you have your prostate removed before it had spread? The reason for doing the Orgovyx before radiation is that it lowers the testosterone that the cancer feeds off of. Also helps kill or weaken the cancer so the radiation will be more effective. I will have 8 more treatments after today. Then continue the Orgovyx for a couple more months. But I was curious about things coming back for you if you had your prostate removed. I look forward to hearing back from you.

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There must have been some cancer cells left after prostatectomy, and then was not totally irradiated after going for RT, so they started to spread out. But I am happy now that my PSA is down to .1 after 6 months on Orgovyx. It’s true I have hot flushes but to me, it’s just like a little sweat out. But what I observed is that my testicles disappeared, and no libido. I read from some bloggers here that one taking Orgovyx tried taking Cialis 5mg at the same time while taking Orgovyx and he had erections after a few months. I just tried last week and it’s true. I am like back to my younger days again. My partner is surprised, he he.

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boniyabes | @boniyabes | 2 hours ago
In reply to @chippydoo "To slow the PSA while doing radiation. One slows it while the other kills it." + (show)
@chippydoo

To slow the PSA while doing radiation. One slows it while the other kills it.

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To add to my earlier response, yes, I had prostatectomy and then RT. And due to rising PSA, that is when I agreed with my Hematologist to take Orgovyx hormone therapy.

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