Orgovyx - asking for advice
Hi everyone,
I’m hoping to get some advice from anyone who’s currently taking Orgovyx.
I had surgery to remove my prostate in January 2025, but my PSA never dropped below 0.11. As of September, it’s up to 0.17. Sloan Kettering in New York City now wants me to start ADT using Orgovyx 120 mg tablets beginning Monday. The plan is three pills the first day, then one pill daily after that. This will come before radiation, which won’t start for another couple of months. They told me they like to begin ADT before radiation.
I’m just looking for any helpful tips or things you wish you knew before starting Orgovyx. A few things I’m wondering about:
• Does it make a difference taking it in the morning verses bedtime?
• They told me to start weight training and take Calcium 600 mg and Vitamin D 1,000 IU each day.
• I’ve read that staying well hydrated is important too.
• Did sex change after you began Orgovyx? I’ve started Trimix injections and my doctor said to keep using them through ADT.
Any advice or suggestions would really help. Thanks so much for any input.
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Does it make a difference taking it in the morning verses bedtime?
• I got chills and felt lousy about 2-3 hours after taking it, but it also kept me awake so I took it at 3 PM after I'd finished most of what I needed to do for the day. Find a time but stick with it to within an hour either way
• They told me to start weight training and take Calcium 600 mg and Vitamin D 1,000 IU each day.
Very important. You'll still likely lose muscle. You should get a DEXA (bone) scan before you start taking it so you have a comparison point once you're six months in
• I’ve read that staying well hydrated is important too.
That's true in general but I haven't heard it specifically re Orgovyx. Maybe others have.
• Did sex change after you began Orgovyx? I’ve started Trimix injections and my doctor said to keep using them through ADT.
Yes. I required A LOT of foreplay to become aroused and didn't have any random sexual thoughts at all. After about 3-4 months on Orgovyx I lost the ability to have orgasms. Getting erections is important, though, so make sure you do it even if you don't feel like it.
Other things to watch: If you suddenly get extremely depressed or have suicidal thoughts don't wait to talk to a doctor about this. Watch what you eat. It's very easy to gain weight on this med.
Sorry to hear about your surgery being unsuccessful. I was able to go 3 1/2 years after surgery before my PSA started rising.
You should be aware of that Orgovyx is ADT (Antigen deprivation therapy) And it essentially drops your testosterone down to below 20, And frequently much below that. There are multiple different ADT products that all do the same. As a result, you have a lot of side effects. One of them is that you lose the desire to have sex, and maybe even to have an erection and an orgasm
When my PSA started rising they put me on a 6 month Lupron shot (another ADT) And two months later, I had radiation. That worked for 2 1/2 years at which point my PSA started rising and I was put on Lupron on which I have now been for almost nine years. I did switch from Lupron To Orgovyx Two years ago, But it essentially works the same as Lupron.
Actually, you should take calcium citrate 500 mg twice a day. That’s recommended for bone health. If you take 600 mg 100 of it gets thrown away because your body can only absorb 500 mg at a time.
If you take Prilosec, you should take Orgovyx at least six hours later Or it can make side effects worse.
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
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 on the 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. 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. Can’t hurt to try it. Seems they ate it daily.
According to a doctor that spoke to a recent webinar, all people on ADT should be taking bone straighteners. I took Fosamax for six years and I’m now on Zometa. That along with calcium 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.
Hopefully you have a minimal number of side effects.
I have been on Orgovyx since JUly 11, 2025. Youbegin with 3 pills first day...then one daily. The first month was kinda tough for me..but once you hit 4th or 5th week..it is no big deal..except :
HOT FLASHES> you will learn they are not much fun- mind dont last long..but are a bit of a nuisance- you will prob have 3-6/day..
Fatigue : a bit but not debilitating...
Sleep: a bit of a problem..I dont sleep as well on ADT.
Appetite: wasnt as hungry early on but that went away.
Dpression: I didn really have tdepression, just was bummed I had cancer..you deal with it..
Hydrate: early on with Orgovyx, I think hydration is very important !
I really think you will find it is pretty tolerable with minimal side effects..- just be aware first 30 days or so are a bit tough.
(Note: Jeff has been on it way longer than me..so I would note his exp as gospel !)
@scottbeammeup
Thanks, Scott. They did order a bone scan, so that’s coming up soon.
It’s hard hearing that sex will change, but I understand that’s expected once testosterone levels drop. You mentioned the orgasms will fade, which is disappointing. From what I’ve learned, erections should still be possible with Trimix, so I’m hoping the sensations and orgasms might return if I’m ever able to come off Orgovyx.
@jeffmarc
Thanks, Jeff. My doctor told me the ADT treatment will last at least 6 months, possibly up to 18 if I’m tolerating it well. I believe that’s because of my Decipher score of 0.84. They prescribed Orgovyx since it works right away, and when I stop, my testosterone should recover faster than it would with Lupron. Not looking forward to any of those side effects.
@xahnegrey40
What time of day do you take it? Is there anything you do to help with sleeping?
@tj1967
The length of ADT is frequently based on your Gleason score which you did not mention.
Gleason score 7 ADT 6 months
Gleason score 8 ADT 18 months
Gleason score 9 ADT 24 months
The thing is when you have a reoccurrence, they usually want to extend the ADT To try to prevent the cancer from coming back.
Have you had genetic testing?? That can cause your cancer to come back it did for mine and also put me on ADT for almost 9 years now.
Get genetic testing to find out if it could be a factor. Does anybody else in your family have cancer? You can get it here for free, takes 2 to 3 weeks to get the results and a genetic counselor will call you. They will send you a kit that you return in the mail.
Prostatecancerpromise.org
@tj1967
I try to take Orgovyx in the morning with my Nubeqa- around 9-10 am ( have to eat something with the Nubeqa... I think you can take it at anytime of the day...just remember if you have early tolerance problem, it will get easier...good luck !
Your specialist has given good advice. I am in my 10th month of Orgovyx and have experienced all the side effects @jeffmarc has listed along with loss of body hair, lost libido, ED, lack of climaxes, diarrhea, and osteopenia. My experience is abnormal, so hopefully yours will be considerably milder. 90 minutes of exercise daily gives me 2-3 hours of better energy. A very low-fiber diet is beginning to control diarrhea. I cannot use Trimix because the alprostadil component causes a deep ache that lasts throughout the erection. I have a Bimix prescription to try and have ordered a vacuum device. We’ll get through this, but life without testosterone is different!
Orgovyx, Vitamin D and Calcium for 4 weeks now. No real troubling side effects but for several trips to the bathroom during the middle of the night and no libido. PSA went from 15 to 7 so far. Keep a positive attitude and pray for all of us.