Your experience with Orgovyx

Thanks for posting this question since my husband will start taking Orgovyx next week and I am also very interested in any additional info or advice.

So far it looks that you covered most things and doing great (*knock the wood). May I just suggest adding some "bunny jumps" or rope jumping or "step aerobic", or portable trampoline - any movement that gives bones some "bumping impact". I read that only that kind of exercise actually builds bone back. Since ADT can cause about 3% of bone loss in just 6 mos., I think it would be beneficial to do it.

Wishing you super successful treatment and complete eradication of PC 🍀✨.

Your level of exercise should help a lot with the fatigue some people feel with ADT. It almost inevitable that you will notice a belly when your stomach muscles weaken. I do a lot of situps and they seem to help, But I have always been thin and that helps too.

Continuously doing weight training can help slow down the muscle loss and may keep the muscles you have if you’re not on ADT for too long. The amount of walking you do along with the weight exercises will help a lot when it comes to your bones weakening.

Due to their different mechanisms of action. ADT which includes Orgovyx, Firmagon, Lupron, Eligard, Prostap, Camcevi, Lucrin, Zoladex, Trelstar, Pamorelin, and Decapeptyl can cause numerous side effects. Actually due to a lack of testosterone.
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Joint pain
Difficulty in breathing

Not all of these side effects occur to everyone on the drugs. Most of them are just things you have to be aware of and circumvent. I walk fast on a track twice a day, 1 mile at least, to help prevent bone weakening, fatigue and muscle deterioration. I also go to the gym three days a week (usually) and spend an hour with all different types of weight exercises. One thing that happens is people get a beer belly from the muscle deterioration, I do a lot of sit-ups to offset that.

Some people get depression but it is not common. It is easily treatable, according to people that have reported it on here and on Online Meetings I have participated in. If he has that problem Come back and ask for help, Or see a psychiatrist about doing something to relieve the depression.

Some people get no hot flashes at all. Others only have a few hot flashes and they are very minor. I had severe hot flashes for the first year on Lupron. As a hot flash was hitting I would feel a lot of fatigue. After a year, my oncologist prescribed a depo-provera shot every three months and it really stopped those hot flashes on Lupron. There are other hormones that can do this, speak to your doctor. If you have this problem, we can give you a list of drugs that can stop it. Ae doctor at a recent conference, put out a big list. I wear a Embrlabs.com Wave 2 device. It can reduce the hot flashes during the day and at night pretty much stops them completely. Megestrol has worked for some people. On Orgovyx I do have fewer hot flashes and they are not as severe, but I have been on ADT so long it may be a factor.

I know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Tofu does have properties similar to endocrine hormones but a lot weaker.

According to a doctor that spoke to a recent webinar, many people on ADT, if they are staying on ADT for an extended period or have become castrate resistant should be taking bone straighteners. I took Fosamax for six years and I’m now on Zometa. That along with calcium and vitamin D taken daily helps keep your bones strong. Ask your doctor about this.

I have never gained any weight while on ADT. I get on the scale every morning and base what I eat on what I weigh. Skip lunch at times. Some people gain a lot of weight. The average is 5 pounds but some gain more and some gain none. Be aware that because you are on ADT you will find it very difficult to lose weight. That is one of the problems when you have a very little testosterone, you really have to work for it. Cutting out meals for weight loss often backfires by causing your metabolism to slow down and promoting fat storage as the body enters a survival-oriented "conservation mode". It leads to nutrient deficiencies, intense hunger causing overeating later, energy crashes, mental fatigue, and potential muscle loss.

Hopefully you have very few side effects from Orgovyx.

@surftohealth88
Great suggestions. Thank you for the feedback. All the best to your husband.

@jeffmarc
Thank you for the feedback. Has anyone suggested Calcium citrate, Vitamin D3 and K2 supplements? Waiting to hear back from my RO on this. Keep up the great work. Best wishes to you!

@rps55481
Actually, I have a pharmacist call me once every six months to go over my drugs. My provider requires this. The first thing they told me was stop taking calcium carbonate, and start taking calcium citrate. It’s absorbed better and doesn’t conflict with other drugs as easily.

I’ve been specifically told to take at least 1000 mg of calcium, 500mg twice a day and at least 1000 units of vitamin D. In my case, I have to take 500 mg three times a day or my calcium drops low with only 1000mg. You need to limit your calcium to 500 mg because your body cannot absorb More than that at one time, If you take more, it just gets thrown away.

It's about mitigating side-effects, not eliminating them.

I've been on ADT since 2021, when I was 56. Once I was able to resume moderate exercise again about 15 months in (the tumour on my spine had left me temporarily paraplegic), it helped reduce the intensity of the side-effects significantly, and I'm still seeing continued improvement now (less fatigue, fewer hot flushes) from staying active.

Nothing will change some side-effects, like body-hair loss, gynocomastia, or lowered sex drive, but they become more tolerable over time (and lowered sex drive doesn't necessarily mean no sex; it just means that you have to be a little creative).

Keep an eye on insulin resistance — your body's not as good at processing carbs while you're on ADT, so shift your diet a *little* further towards protein, fibre, and healthy fats (nothing drastic; you still need carbs) and exercise right after meals to stabilise your blood sugar, even if it's just a 15 min stroll outside.

Best of luck!

My experience - Began taking Orgovyx 6/7/2025. First 2 months PSA dropped from 30 to 0.19. Hot flashes, joint pain were pretty common. Muscle weakness began about the 4th month, along with mild weight gain. (yes, I walk and do resistance training). I also now have a pair of boobs that some old girlfriends would be envious of. One plus is I don't have to deal with body hair anymore; it's gone. PSA began rising in December 2025 and is now in double digits again.

Short version - If I had known it was only going to work for six months, I would not have put my body through that. That said, I know I am an exception to the norm; Or as my oncologist said, "You're very weird." May your results be better.

I am 64. 6 tumors (4 gleason 6 / 2 gleason 7 with cribriform). In consultation with MSK, Smilow, and Hartford Health Tallwood I was advised that surgery vs radiation was 'equipoise'. One no better than the other and both good options. I took Orgovyx for about 30 days prior to the start of 5 SBRT treatmens and for another 120 days after (about 4 months). Side effects: zero energy, hot flashes, no weight gain (I am not a big person - 5' 9" 145 or so and had lost some weight), zero appetite, zero libido. At the advice of many on this blog (Heavy Phil, Jeff Marci, and others, I continued my typical exercise and added on by about 50% additional activity. It worked great. I had side effects and they were entirely manageable. I haven't been able to gain my weight back, but my energy level is returning, hot flashes only on occasion, and close to normal libido, not much appetite (?). Exercise was key. Last psa was .02 - I won't have any update until my next psa in August. Good luck - it works out.

Starting my third month on Orgovyx. The hot flashes are annoying but not debilitating yet. Always been fairly active; walking the golf course when I can; treadmill and some resistance training. I’ve increased the resistance training to mitigate the muscle loss and actually feel stronger. Certain that will change over time. RT starts in July and I’m concerned about the SE from that combined with ADT.

I have completed 7 months of ADT following SBRT (first Lupron and now Orgovyx) with a planned 12-18 month course. PSA for Gleason 9 disease down from 15.1 ng/mL to 0.06 ng/mL. Hot flashes are daily (but manageable), weight gain is moderate (~10 lb) with no change in may diet from baseline and exercise is daily (walks, Zumba, cycling and pilates). Still I fatigue mid-afternoon, my sleep is erratic with early AM awakening (and routinely disturbing dreams), and I struggle with both ED and absent libido. I try to cheer myself with the hope that all of this is temporary and my cancer will remain in remission once completed, but know there is no guarantee. I will be 75 years old in December which would be sobering enough without the cancer diagnosis and the chemical castration. I have to remind myself not to wallow in depression and self-pity knowing there are others for whom things are far worse.