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What's your experience with Orgovyx (relugolix)?

Prostate Cancer | Last Active: 1 day ago | Replies (184)

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@ragbrai50

I will be starting Orgovyx (relugolix) soon. I am considering waiting until we get back from an upcoming road trip to see family, thinking I might not want to have to have my first experience with any side effects while on that trip.

Does anyone recall whether their side effects were essentially immediate upon starting the drug, or was there some period of time before the side effects began to show up?

Thanks!

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Replies to "I will be starting Orgovyx (relugolix) soon. I am considering waiting until we get back from..."

Although it lowers your T levels quickly - within 1 month - I felt no side effects until perhaps the end of the second month - mild hot flashes.
They did progress (now in my 5th month) but the worst side effect for me is the insomnia. Never had trouble sleeping and usually fell right back to sleep even after getting up to pee.
Now it’s wide awake, toss and turn….Don’t think a trip - even a few weeks long - will be adversely impacted by Orgovyx but everybody’s different.

I also delayed Orgovyx but there was really no reason to. After 1 month, I had zero side effects and asked my RO for a T test to be sure it was working.
I've been on it 8 months now. I also take Abiraterone.

I've been pretty lucky with SE's I see a loss of muscle mass by my reduced maximum in the gym but no obvious body changes.

And very limited and mild hot flashes, no fatigue (not even from RT).

Like @heavyphil my sleep isn't great. Melatonin helps a little (sometimes) and I've started "mindfulness" which I was sceptical about but may be helping. If not enough, I plan to consult an onco-psychologist.

Loss of libido yes but not important for me.

Not happy about the probable loss of bone mineral density but trying to reduce the impact.

So it really depends. Everyone says it helps to be fit and active (which I am) so it could be that but as heavyphil points out, everyone is different.

My first side effect, hot flashes, occurred on day 28. Having said that I did have a minor upset stomach on day one after taking the loading dose of 3 tabs.
I do not know how long you will be on O, but please be conscious of your weight, muscles and bones through diet, cardio, aerobic and weight bearing exercise.

Stay Strong Brother.

I waited to start ADT because I was going to be off grid for a couple of weeks (as in 150 miles from the nearest town/airport/road). But, like others have mentioned, I probably could have started prior to the trip without consequence. I essentially didn't notice any side effects (perhaps outside of worsening sleep) for a couple of months. The two month point is roughly when my radiation routine started and when the various side effects became noticeable.