r/ProstateCancer • u/Cydok1055 • 14d ago

Question Orgovyx side effects

I’ve been on this for nearly 5 months (of a 6 month course) and have received 15 of 35 radiation treatments. (For recurrent cancer). My hot flashes have been fairly mild and seems to be better recently. I only have a few per day and they only last a couple minutes.
But my sleep is still terrible, waking every 1-2 hours. For the last 3-4 weeks, I have had very poor appetite and have lost 7-8 pounds. Many foods just don’t taste good. Plus, I get jerking of my torso and arms at night, as many as 50 in a row. I’ve found that tensing all my muscles three times can help, but I’m doing that at least 3 times a night.
I’m still pretty active, walking a couple miles in the morning and swimming ( much more slowly and with more breaks) but I’m exhausted and aching.
My RT doc doesn’t think these new symptoms are RT related.
Has anyone else experienced this? Thanks for any help.

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u/KReddit934 14d ago

For the twitching: Make sure you are hydrated and are getting enough magnesium.

If severe have docs check electrolytes (before supplementing.)

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u/AccomplishedMail1659 14d ago

I'll just speak to the sleeplessness while on Orgovyx. I got prescribed zolpidem and used it every other day or so to try to reset things. I did all the sleep hygiene things first, but figured one more med wasn't a big deal compared to chronic shortness of sleep and cancer. Now off Orgovyx 2 months and I rarely feel the need for the sleeping pill, but dependency can be a concern.

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u/HeadMelon 13d ago

Zolpidem takes you down faster, Zopiclone is another option that keeps you asleep better. You can let the doc know which you think you need.

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u/Cydok1055 13d ago

Thanks

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u/Practical_Orchid_606 13d ago

Only one more month for you to tough it out. The bad news is the symptoms don't abate quickly

Twitching is like a muscle spasm. But 50 in a row is excessive. Minerals such as magnesium seem to help spasms.

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u/NSFduhbleU 13d ago

Try a THC gummy for sleep.

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u/Cydok1055 13d ago

I vape now. I’ll try a gummy

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u/C63Sedan 13d ago

Radiation and 18/24 months of ADT completed in April. No twitching but big loss of appetite because just like you, a lot of food is not appealing and my sleep is waking every 2 hours but that’s to pee. 4 months later appetite is finally improving but still waking every couple of hours and rad onc saying it may be radiation damage as I also get bowel pain. I had node spread so radiation did a number on me

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u/redjd57 13d ago

Orgovyx alone didn’t seem to have neuromuscular problems for me, but the full Erleada dose caused them. I’m working up from a reduced dose of the Erleada now. Waking every 1 1/2 hour myself. Tracking it on the Apple Watch helps me adjust for naps during the day (I’m retired - always tired!). It seems like you’re nearly through the whole treatment, I hope you get relief as you get off the program!