Orgovyx experiences?: Orgovyx... - Prostate Cancer N...

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Orgovyx experiences?

Scooter22 profile image

Orgovyx experiences? I know everyone responds differently to adt but start this stuff next wk & was just wondering? Thanks

17 Replies

My husband has been on it for 3 months. During that time he has also had 44 radiation treatments. His only side effect has been fatigue and was that from Orgovyx or the radiation? He’s had no hot flashes and mood seems to be the same as ever. I give it a thumbs up.

Scooter22 profile image
Scooter22 in reply to Farmer3419

Good luck to you guys. 🙏

Is a pill... I have issues sometimes with the things getting stuck in my throat. Have had that issue with pills since a kid (tonsils removed)...

Side effects are different for everyone and the SE profile is similar with Orgovyx to Lupron. So there's that... I have suffered it all fairly well so far with minimal SE's except fatigue! I believe that since I'm now a year straight on ADT, switched to Orgovyx mid way, (newbie for sure) I'm really starting to feel fatigue which is pretty heavy some days. But that's about it. No hot flashes, etc. And oh, yes, the loss of libido! Hasn't crossed my mind at all in some time. I have to "THINK" about that on purpose, lol. I'm sure I could fight the fatigue if I could get my buttocks moving but there's some other issues there. That is a very important aspect that I've read again and again, to maintain physical activity to help offset the fatigue. Counterintuitive but I'm sure it works.

Anyways, good luck!

Scooter22 profile image
Scooter22 in reply to Cooolone

Good luck and Godspeed. Your posts are very informative. Thank you for that.

I've been on Orgovyx for 1 month. I started soon after salvage SBRT treatment.

The hot flashes I've experienced are quite manageable. They started soon -- a few days -- after beginning Orgovyx. They can appear any time; I have detected no strong pattern.

Fatigue is a second side effect, noticeable especially when exercising. It has just been perhaps 20% harder to do the four-mile brisk walk I do most days up and down the small hills in my neighborhood. How much of this is a result of SBRT and and not Orgovyx is hard to say.

The final side effect is occasional bouts of light headedness. But is it Orgovyx or is it Flomax, which I also have been taking. It is hard to say.

A final comment: it's still early on in the 4-6 months I am scheduled to take Orgovyx, but Orgovyx's impact on my sexual interest and function has not been significant. Those are still intact, I'm happy to report.

I am 74, diagnosed with Grade 5 Gleason 10 localized prostate cancer in 2016. Over the years since diagnosis, I have been treated sequentially with a combination of immunotherapy and focal cryotherapy, and, now, SBRT. The SBRT was focused on treating a 7 mm tumor adjacent to the prostate gland. That tumor was the only disease detected by a PSMA scan at UCLA taken earlier this year. But who knows what micrometastases may exist elsewhere!

Scooter22 profile image
Scooter22 in reply to Boonster

Good luck & Godspeed to you sir!

LeeLiam profile image
LeeLiam in reply to Boonster

Boonster, Your treatment protocol (cryo/immuno) sounds like the one Dr. Onik developed. Is that who treated you?

Boonster profile image
Boonster in reply to LeeLiam

Yes, he treated me for years. You?

LeeLiam profile image
LeeLiam in reply to Boonster

No. My primary was seeds and EBRT combined in 2006. My PSA was undetectable for years until recently. I spoke to Dr. Onik on the phone when my axumin scan showed suspicion of cancer in the center of the prostate last September. But then I did a PSMA scan in a trial in October and it only showed cancer on my T8 vertebrae. Dr. Onik said he could treat that but I was fearful of any thermal treatment so close to my spinal cord. So he agreed that I should proceed with proton to the vertebrae. I told him if a scan ever shows cancer in any soft tissue, I will come to Ft. Lauderdale as fast as I can. He has had some amazing results.

Vynbal profile image
Vynbal in reply to Boonster

I have been on Orgovyx for 4 months now. I started Flomax after 5 weeks of RT due to urinary urgency. After 5 days on Flomax I had a lot of lightheadedness and found that when vertical my BP dropped to 70/50. I stopped the Flomax and returned to normal.

I have been on orgovyx shortly after it was approved back in January so probably have been on it for 8 months. I have also been on firmagon and Lupron in the past so I am able to compare each.

The injection site reaction with firmagon was horrible.

Lupron caused me heart arrhythmia problems after approximately 15 months. This is not an uncommon problem with Lupron. Within two months of stopping Lupron the arrhythmia ceased.

I believe that the hot flashes I experience on Orgovyx are less often and much less bothersome than they were on Lupron, and slightly less than firmagon.

I am not sure if the fatigue was greater on either of the other two than Orgovyx. I am able to work out 3 hours a day with weights and cardio at the gym 4 days a week, I am able to walk unlimited distances on flat ground, I have less stamina in my legs going up steep hills than I would normally have if I weren't on any of these drugs. But the side effects are certainly tolerable and I believe more tolerable on the orgovyx. None caused me any weight gain, and I have not had to greatly modify my food intake to maintain my weight.

I have noticed that I do not sleep as well at night being on the orgovyx, and I can't remember if the other two caused the same problem but I believe they did. Orgovyx occasionally makes my stool hard and hurts when I have to take a dump.

Because the Lupron caused heart issues, and firmagon injection site reaction that lasted over a week, for me it was a no-brainer to take a small daily pill that costs me fifty bucks a month.

Forget about any interest in sex on any of the three after two or three months. None of them dampened my interest in sports cars, which are much more fun than sex anyway. I would suggest you buy something Italian, and drive it like you stole it!

Hope this helps

Scott

Scooter22 profile image
Scooter22 in reply to wilcoxsaw

😂😂😂$50/mo! My 1st 2 mos. are free, after that $950 w/my deductible then $500/mo until I’m done!

wilcoxsaw profile image
wilcoxsaw in reply to Scooter22

For some reason my copay last month was $9.20.

Scooter22 profile image
Scooter22 in reply to wilcoxsaw

Thanks for the great info btw!

I have been on Orgovyx for 4 months now. My main SE has been ED and loss of libido (so at least I don't care about the ED). Secondary SE include insomnia and muscle cramps - particularly in my hands.I have had little fatigue, hot flashes, or night sweats.

Scooter22 profile image
Scooter22 in reply to Vynbal

Oh, doesn’t sound too bad. I’ve been taking it for 5 days now. No problems so far. Knock on wood! Thanks

Vynbal profile image
Vynbal in reply to Scooter22

YMMV Best of luck!

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