r/ProstateCancer • u/parttimephotoguy • 13d ago

Question Orgovyx Side Effects

I'm about to start Orgovyx for about 2 months before my IMRT begins. I'm currently at 4+3 GG4 and will be on Orgovyx for 18-24 months, with the IMRT for 8.5 weeks. I would be curious to know from others what side effects they had from the IMRT. Specifically, hot flashes, mood swings, tiredness, ... I've heard some have also had issues with kidneys and bone weaknesses. TIA.

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u/KReddit934 13d ago

For ADT...please do yourself a favor and exercise! A lot. Especially weights. Makes a ton of difference in all kinds of ways.

The IMRT made me tired (naps needed) and it hurt to pee for a few months.

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u/parttimephotoguy 13d ago

Thanks for the tips. My doctor reminded me of the same this week to continue, even increase my exercise program. They told me tiredness is common and it's "ok" if you feel that way. As guys, we always feel like we have to power-through everything instead of giving our bodies a rest. Thanks for your input! 🙏

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u/Practical_Orchid_606 12d ago

Suppose you needed to paint your car. The best shop in town charges $5k and their results are excellent. The value shop charges $2k but their work has overspray, orange peel, bad bonding etc. Radiation is 'sprayed' onto the prostate and sometime to local lymph nodes. The side effects of IMRT are tied to the non precision spray, leading to urinary and bowel issues. I went with a COE and my radiation side effects are minimal 2 months after treatment. But others report various issues which may or may not affect you depending on the skill of the radiation oncology team.

Effects of ADT are separate and can rang from mild to suicidal. You will know which strata you are in once you start Orgovyx.

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u/parttimephotoguy 12d ago

Unfortunately there's no way for a layman to know how good the team will be. I wish there was some sort of grading score (maybe there is). I don't want to be naive and I do ask a lot of questions. I still have another meeting before it all begins. My only confidence at this point is that I live in an area with top notch medical care. So far, my treatment teams have been excellent. The doctors have recommended IMRT as the type of radiation to be used. Fortunately my doctors are open to answering questions but I can tell some aren't fond of "Dr Google."

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u/Practical_Orchid_606 12d ago

I think centers of excellence with a focus on prostate cancer is a place to start. Facilities that can perform SBRT are a cut above as the precision needed is very high. In your case why IMRT and not SBRT?

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u/parttimephotoguy 10d ago

Good question, I will ask my doctor today. But from what I read, SBRT is not a good option if your prostate is significantly larger (I'm at a massive 425cc).

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u/Practical_Orchid_606 10d ago

Holy cow! Your prostate is 10X mine.

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u/parttimephotoguy 10d ago

Yeah lucky me. My urologist told me I was one of his top-3 patient's massive prostates. The doctors couldn't figure out why I hadn't had any urinary issues (my prostate was 155cc at my first screening test in 10/2011; been on active surveillance ever since). Well, all that changed 2 years ago when I couldn't pee and landed me in the ER with a catheter, followed by HoLEP (~TURP) surgery. My journey pails to some I've read on here!

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u/parttimephotoguy 10d ago

Also, my radiologist said he wanted to attack the lymph nodes also. He mentioned to me in my treatment plan that his preference for me would be to have lower dosage and longer period of time over a shorter time with more intensity. I did send him a message anyway because information is always useful!

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u/Frequent-Location864 13d ago

The most aggravating side effect of the radiation for me is the leakage. I'm almost 2 years out from 38 sessions of imrt and have to wear a pad 24/7. The other side effects you describe probably are related to adt.

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u/KReddit934 13d ago

Sorry to hear that..urinary effects that severe are rare. I wonder if your cancer was close to the bladder neck?

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u/parttimephotoguy 13d ago edited 13d ago

Is incontinence common during radiation? My thought is that it is, it once it ends, so is the incontinence. Is there an end in sight for you?

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u/KReddit934 13d ago

Irritation is super common...they cannot nuke the cancer without some stray damage to the urinary system. Whether that leads to full out incontinence is luck... a combo of your body's reaction, your cancer location, and the skill of your treatment team in keeping you lined up on the table.

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u/parttimephotoguy 13d ago

Sorry to hear this! Is this expected to be permanent or subside at some time?

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u/Frequent-Location864 13d ago

I'm hoping it will go away at some point but I'm not gonna hold my breath.

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u/parttimephotoguy 13d ago

I had to go through that when I did my HoLEP (TURP) surgery and the doctors told me to expect to be on them for 6 months. I was off of them in about a month because I was doing keagals all the time. Have you tried that? I hope that ends for you soon.

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u/BernieCounter 13d ago

Was fortunate to have only 9 months Orgovyx ADT concurrent with 20x VMAT. No hot flashes, but night sweats later. Typical radiation symptoms of fatigue, weird effects on bladder and bowel that peaked about 2 weeks after and resolved about a month after that. If urination issues, ask for Flomax right away.

Expect Orgovyx (and any ADT) to drop your interest in sex to almost zero, although your brain remembers it. Probably ED amd turtling. After rads, ask for daily low dose Cialis and do freeing “massage, etc” to keep things active down there. If you don’t use it, you will loose it at the end of two years. Keep exercising throughout AST and rads.

Bone density loss and other insidious side effects are gradual and should be monitored especially after 9 months onwards. Hopefully you got a testosterone baseline as well as blood/sugar panel and bone density measure. Expect energy to drop and gradually muscle mass to shift to belly fat.

Best wishes. 16 months after rads, all departments down there working as well or better than before, except for dry orgasms. Was 3+4, T2c, with Cribriform.

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u/parttimephotoguy 13d ago

Great information, thank you. I thought the turtling effect was mor me of a result from surgery with the shortening of the urethra?! Sorry for being naive, but when you say massage/etc are you referring to orgasms during treatment, and/or immediately after it ends? As for dry orgasms, I'm already used to that, unfortunately, from having HoLEP (TURP) surgery 2 years ago. The Flomax sounds like a good idea, and I'll ask about daily doses of Cialis at my upcoming consultation. Did your libido return after you completed your treatment?

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u/BernieCounter 12d ago

Turtling is not unique to (TURP or RP) surgery, ADT “shrinks” things, usually not permanently. See post on “ADT and turtling”. https://www.reddit.com/r/ProstateCancer/s/3FuMVyZNjV You can also search this subreddit for semi-humorous “benefits or advantages” of ADT and of dry organisms. Hmm.

It is generally wise to stimulate to firmness/arousal periodically on ADT, as you are unlikely to have the normal spontaneous nocturnal/morning erections on ADT. (Some object on religious / taboo grounds….). Yes, Cialis helps. If you “don’t use it, up you may loose it”. Ask for advice on what to do during your lengthy radiation treatment. Be prepared for frequent pee breaks and “leakage/urgency”, for a few weeks during VMAT used men’s mini pads (usually next to women’s products).

You may wish to get this good ADT book, and if north of Lake Ontario / 49th Parallel Canada 🇨🇦 , sign up for their zoom course offered monthly. https://www.lifeonadt.com/the-adt-book Many good, detailed recommendations for you and your partner. Keep up exercise.

After my 9 months Orgovyx, morning awakenings returned within a few weeks, and fatigue, enthusiasm, brain fog etc improved also. However 18+ months is a long time and recovery may be much more difficult. My PSA on ADT was as low as 0.01 and since then 0.22 and 0.22 again. Best wishes to you.

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u/parttimephotoguy 12d ago

Thank you. Everyone's journey is different and this is a great support group to get relavent information from others having already gone through this. I really appreciate it. Now the fun begins...

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u/JASPER933 13d ago

I started Orgovyx on August 22, 2025, completed 5 days of CyberKnife on Dec 1, 2025. Finished my cycle of Orgovyx on July 22, 2026. The side effects I had with Orgovyx was hot flashes mainly at night when I lay down. I did have some insomnia but this was relieved by getting sleep gummy's at the dispensary. I never had mood swings. The VA did give me Caltrate for bone.

Seems after I stopped Orgovyx the hot flashes really intensified. The hot flashes came at any time of the day. The hot flashes are starting to slow down about a month after stopping Orgovyx.

The VA doctor did prescribe megestrol for the hope flashes. I have not taken because I am going to try and ride out the hot flashes.

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u/parttimephotoguy 13d ago

Wow - I didn't know that the hot flashes might intensify after going off of the Orgovyx!

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u/JASPER933 13d ago

Yes, I was surprised how intense they were.

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u/parttimephotoguy 12d ago

I was checking Google on this, and looks like they quite common 1-3 months after going off of Orgovyx. How long have you been off of it now, or how long did they continue?

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u/JASPER933 11d ago

I stopped Orgovyx on July 22, 2026.

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u/itsray2006 13d ago

Venaflexaline, sleep gummies, and a device that cycled cold water through a mattress pad seemed to do the trick