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.

@vircet

I'm 1-1/2 months in Orgovyx. I woke up 4 times after midnight feeling a little bit hot in the body and cold legs as if they were a little wet for a couple minutes, and then I would be okey as if nothing happened. My worst experience to date.
I finished my SBRT treatment 18 days ago; my oncologist said that my immediate side effects would probably peak around the third or fourth week. I will see what happens next week. After that I hope things will get better.

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Yes, I think the insomnia was the most annoying thing, since I am usually a sound sleeper. All good now 3 months post Orgovyx.

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@brownsf

I’ve been on Orgovyx for about 2 months. My PSA has become undetectable . The main side effect I’ve experienced is hot flashes a couple of times/day for a few minutes. To me it’s an annoyance but a small price to pay considering the benefits. I hope guys won’t be scared off by the list of possible side effects which, for legal reasons , must be all inclusive. Most men will not experience many of them. Some might. One advantage of Orgovyx over injected hormones is that you can always stop if you are unlucky enough to have bad side effects.

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I'm 1-1/2 months in Orgovyx. I woke up 4 times after midnight feeling a little bit hot in the body and cold legs as if they were a little wet for a couple minutes, and then I would be okey as if nothing happened. My worst experience to date.
I finished my SBRT treatment 18 days ago; my oncologist said that my immediate side effects would probably peak around the third or fourth week. I will see what happens next week. After that I hope things will get better.

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@firespooks

Has anyone tried the new “Patch” that is out there , that is supposed to be the NEW hormone therapy ? If so how did it work. My Urologist never heard of it.

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It’s actually not that new. It uses estradiol to suppress T. Less side effects due to the fact that it is absorbed thru the skin and does not go thru the liver (doesn’t raise enzymes).
Phil

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@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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My cancer came back after a RP 2 years to the date after removal. No spread per PSMA Pet at that time. Keep in mind that test is good for that day and it also needs a tumor around 2.7 mm in size to see, so I have heard. My PSA had risen to .22, BCR. There is a mysterious margin slide that my surgeon denies but noted by both RO and second opinion Genitourinary Cancer specialist last week that is the suspect. Surgeon will be relegated to blood tester. Any future treatment will be done at our local Comprehensive Cancer Center.
Cells can work their way out of the prostate into the bed or left behind if your surgeon cuts the margins to close trying to save nerves.
They get paid, we get adt and zapped. I've heard the same story many times on this thread. The Genitourinary specialist at the CCC cancer that I had a second opinion with last week told me to hold off on any future treatments and wait 6 months after ADT to get my next PSA test. Also told me to come see him if my PSA rises to 2 (not 0.2) and he will find it and treat it. After 3 mos. on ADT and 6 weeks after radiation my PSA is 0.014 which is as low as it can be measured at my facility. Stated my greatest risk is being overtreated.

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Has anyone tried the new “Patch” that is out there , that is supposed to be the NEW hormone therapy ? If so how did it work. My Urologist never heard of it.

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@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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@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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@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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@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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@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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