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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.

natem | @natem | Jun 2, 2023
In reply to @melcanada "On Xtandi and psa back down to 1.0 Xgeva added Take 1200 mg calcium daily Anyone..." + (show)
@melcanada

On Xtandi and psa back down to 1.0 Xgeva added Take 1200 mg calcium daily
Anyone try Turkey Tail mushrooms google it
And black seed powder
and bitter apricot seeds
Say it clears cancer

Jump to this post

May I ask, what form is the Calcium in? I don't mean capsule or pill, but like Magnesium it may be Magnesium Oxide vs Magnesium Malate, Glycinate. Some are easier/harder on digestion, some absorb better and I believe some doesn't accumulate in arteries, etc... thanks much for any insight, etc.

All the best!

REPLY
2 replies
melcanada | @melcanada | Jun 2, 2023
In reply to @natem "May I ask, what form is the Calcium in? I don't mean capsule or pill, but..." + (show)
@natem

May I ask, what form is the Calcium in? I don't mean capsule or pill, but like Magnesium it may be Magnesium Oxide vs Magnesium Malate, Glycinate. Some are easier/harder on digestion, some absorb better and I believe some doesn't accumulate in arteries, etc... thanks much for any insight, etc.

All the best!

Jump to this post

Calcium tabs with D3 from Costco Purple 600 each swallow hole

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ftd3 | @ftd3 | Jul 5, 2023
In reply to @maverick75 "Well said. In my case (intermediate, unfavorable, localized), I talked to experts across the county and..." + (show)
@maverick75

Well said. In my case (intermediate, unfavorable, localized), I talked to experts across the county and decided on treatment at Mayo Clinic because I found an RO who is leaning into the science. I ended up with all of the testing noted followed by SBRT. He's using all previous testing plus my risk profile on the Decipher test to determine if he'll recommend ADT (relugolix in my case), and if so, for how long. Personally, I've never liked the notion of "one size fits all" and "that's the way we've always done it..." I realize that each person's journey is unique, but for me, research to gain understanding and insight and finding a treatment team you are totally comfortable with is key.

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maverick75, Thank you for your post.
You talking about your journey got my interested to know if which Mayo Clinic you are getting therapy and who if your great sounding RO?? Sounds like you did well when you found him. Take care.

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1 reply
maverick75 | @maverick75 | Jul 5, 2023
In reply to @ftd3 "maverick75, Thank you for your post. You talking about your journey got my interested to know..." + (show)
@ftd3

maverick75, Thank you for your post.
You talking about your journey got my interested to know if which Mayo Clinic you are getting therapy and who if your great sounding RO?? Sounds like you did well when you found him. Take care.

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My RO's name is Albert Attia, Mayo Clinic Jacksonville, FL. As an update, my Decipher score came back .69 which put me in the high-risk category. Doing 6 months of Orgovyx.

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michaelcharles | @michaelcharles | Jul 12, 2023
In reply to @edva1943 "I was on active surveillance for three years. When PSA started rising again (6.4) and a..." + (show)
@edva1943

I was on active surveillance for three years. When PSA started rising again (6.4) and a third biopsy showed PC becoming more aggressive, doctors recommended treatment: six months of Orgovyx, and Cyberknife. The first few month of hormone treatment weren't bad, but in months 4, 5, and 6 hot flashes became more intense, and muscle weakness much and fatigue more noticeable. Hot flashes and weakness continued for about two months after treatment, with sleep difficulties. At the end of treatment, PSA was 0.03, and T was 3. My labs 10 weeks after treatment showed PSA at 0.13, and T back up to 255 -- close to pre-treatment levels. So everyone is quite happy with the results so far. The doctors said that Orgovy has a faster recovery, which seems true. I'm 79 y.o.

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Orgovyx recovery time?
Reread edva1943 post, and that was helpful.
4 wks post 4 mos orgovyx and still struggling with fatigue and "wooziness ".
Age 73
However I think that I feel a bit better (10%ish).
Anyone with "recovery" from Orgovyx, or other ADT agents have experience to share?

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1 reply
maverick75 | @maverick75 | Jul 13, 2023

I'm just one week in following SBRT. Continuing my daily workouts. So far, just a little fatigue and the "wooziness" or slight "fog" others have reported.

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rhubymama | @rhubymama | Jul 13, 2023
In reply to @natem "May I ask, what form is the Calcium in? I don't mean capsule or pill, but..." + (show)
@natem

May I ask, what form is the Calcium in? I don't mean capsule or pill, but like Magnesium it may be Magnesium Oxide vs Magnesium Malate, Glycinate. Some are easier/harder on digestion, some absorb better and I believe some doesn't accumulate in arteries, etc... thanks much for any insight, etc.

All the best!

Jump to this post

I hope you have found more information on calcium by now, but in case you haven’t:
My husband is on calcium citrate which does not require much stomach acid to absorb. (He also takes Pepcid)

He was already taking 400 mg of magnesium oxide prior to ADT (degarelix). Leg cramps at night began after starting calcium supplements, an additional 400 mg of magnesium oxide was okayed by his cardiologist and the leg cramps stopped.
Building bone requires more than calcium and vitamin D.
If you haven’t had your baseline DEXA you should get one. I wish you well in your fight against PCa.

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teddyrey | @teddyrey | Aug 22, 2023

Good results from Orgovyx so far. Side effects not as bad as Lupron injections. 2nd time using after a 1 month reduction in PSA from 17 to 6. Unfortunately PSA went back to 15 last month and my doctor is going for 3 months on Orgovyx this time around. Side effects are hot flashes, insomnia, depression and muscle loss the first time. This time getting more side effects 3 weeks in. Tiredness, joint aches and some diarrhea unfortunately this time. However, no muscle weight loss yet this time. Will update more later. Hope for all of us.

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kujhawk1978 | @kujhawk1978 | Aug 23, 2023
In reply to @michaelcharles "Orgovyx recovery time? Reread edva1943 post, and that was helpful. 4 wks post 4 mos orgovyx..." + (show)
@michaelcharles

Orgovyx recovery time?
Reread edva1943 post, and that was helpful.
4 wks post 4 mos orgovyx and still struggling with fatigue and "wooziness ".
Age 73
However I think that I feel a bit better (10%ish).
Anyone with "recovery" from Orgovyx, or other ADT agents have experience to share?

Jump to this post

I did 18 months of ADT starting in Jan 17, last 90 day shot was May 18. By October, T was 135, by February it was 400+. As T recovered, SEs, hot flashes, muscle and joint stiffness, fatigue and genitalia shrinkage disappeared.

Kevin
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michaelcharles | @michaelcharles | Aug 23, 2023

Kevin:
Thank you.
I am now 10 weeks post ADT Orgovyx, and the last week or so I have felt my walking pace picking up a bit. Other SEs abating also.
Will not be testing T or PSA until 6 mos post radiation in November. 🤞
Sounds as if you had a relatively quick T recovery after 18 mos of ADT, so good for you and good to hear.
Best, Michael

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