How long before Orgovyx side effects begin to arise?

Posted by csimadera1 @csimadera1, Jan 13 9:09pm

Waiting for my Orgovyx to arrive so I can begin ADT. Have a procedure on 02/19 for Fiducial markers & barrigel then wait for my schedule for RT. Was wondering on average, how long before the ADT side effects begin to arise? I understand everyone is different. Just looking to prepare myself mentally for the process.
I have declined the "2 year protocol" and opted for the initial 6 month term and see what The Good Lord drops in my lap.
Thank you guys in advance!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for csimadera1 @csimadera1

@shmo Thanks, I am somewhat active, 3 mile walk in the morning & afternoon, play wii games to stretch with 90 pushups intermittent then 40 minutes on the stationary bike before bed. Hoping for the best, preparing for the worst. Wife is concerned about the "bedroom" activity, I'm 67 shes 58, we shall see what comes up or doesn't . . . LOL

Jump to this post

@csimadera1 Have your doctor order 5mg daily of Cialis and this will help a bit.

REPLY
Profile picture for brianjarvis @brianjarvis

The HERO study (https://www.nejm.org/doi/full/10.1056/NEJMoa2004325) goes into great detail about Orgovyx.

If your diagnosis warrants 2 years of ADT, stopping after 6 months is very risky. (The Good Lord has already allowed doctors the knowledge to know what cancers warrant 6 months and which warrant 24 months. Choose well.)

Jump to this post

@brianjarvis
Brian I have been on ORGOVYX now for about a year. I had hot flashes sometimes 3 to 4 a day or more including at night. I have stage four metastatic prostate cancer so my oncologist gave me a prescription of megastol 40 mg to help with the hot flashes ! It really helped me I also told my wife I would never ever tease her about hot flashes again !

REPLY
Profile picture for tazman482 @tazman482

@brianjarvis
Brian I have been on ORGOVYX now for about a year. I had hot flashes sometimes 3 to 4 a day or more including at night. I have stage four metastatic prostate cancer so my oncologist gave me a prescription of megastol 40 mg to help with the hot flashes ! It really helped me I also told my wife I would never ever tease her about hot flashes again !

Jump to this post

@tazman482 Fortunately, by ramping up my resistance-training exercises prior to starting ADT, I was able to avoid hot flashes (and only had very mild warm flashes).

It’s really important to stay on ADT for as long as prescribed. Radiation damage to DNA can continue long after the radiotherapy itself has been completed. So by keeping the androgen receptors inhibited or suppressed by hormone therapy, the DNA repair mechanisms can be suppressed for months. This is why adjuvant ADT is a very important component to kill prostate cancer cells.

REPLY
Profile picture for Jeff Marchi @jeffmarc

You don’t give us information about your actual case. If you have a Gleason score above seven and any of the aggressive issues two years of ADT may be a blessing.

Were any of these things found in the biopsy intraductal, cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive.

One thing about prostate cancer is that if you let it grow, it is extremely painful. That two years of ADT could save you from that. My father died of prostate cancer and his last few weeks he was in so much pain he was on so much morphine he couldn’t communicate. This is a man who had so much pain tolerance he had his teeth ground down and crowned without Novacaine..

The good Lord, can’t save you from the pain prostate cancer can give you.

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 run 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, 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 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.

Jump to this post

@jeffmarc Something I had no idea about until recently is that estrogen is produced by men. Apparently, men make estrogen out of testosterone. So when testosterone is almost eliminated by ADT, estrogen levels decline as well. Which tends to account for the similarity of symptoms that men experience when on ADT to the symptoms women experience in menopause - i.e. low estrogen. My RO wasn't enthusiastic about using estrogen to treat ADT hot flashes and other low estrogen symptoms with estrogen, but I'm not sure why. If I was ready to abandon more traditional ADT rather than continue to experience the side effects, I would consider estrogen plus ADT, or even estrogen alone, given its proven ability to reduce testosterone as well as traditional ADT drugs.

REPLY
Profile picture for climateguy @climateguy

@jeffmarc Something I had no idea about until recently is that estrogen is produced by men. Apparently, men make estrogen out of testosterone. So when testosterone is almost eliminated by ADT, estrogen levels decline as well. Which tends to account for the similarity of symptoms that men experience when on ADT to the symptoms women experience in menopause - i.e. low estrogen. My RO wasn't enthusiastic about using estrogen to treat ADT hot flashes and other low estrogen symptoms with estrogen, but I'm not sure why. If I was ready to abandon more traditional ADT rather than continue to experience the side effects, I would consider estrogen plus ADT, or even estrogen alone, given its proven ability to reduce testosterone as well as traditional ADT drugs.

Jump to this post

@climateguy
Some people are using estrogen when they’re having ADT to reduce some of the problems. It can also increase the libido. You don’t have the same amount that you would have if you were just using patch trial techniques.

You definitely could try it to see if it helps. If someone has BRCA2, they cannot do this safely.

REPLY

I started radiation treatment combined with ADT therapy last summer (2025). During the radiation treatment I experienced tiredness, fatigue and gastrointestinal issues. Some of that has eased but periodically I'm reminded of the changes that accompany hormone therapy. The hot flashes were rare and never a problem. Around October I began to feel testicular discomfort. My vas deferens would become inflamed accompanied with a constant ache. That since has subsided but overall my testicles are very sensitive to the touch. Support wearing bikini underwear and a jock strap help considerably. I can get it up, but the discomfort nullifies any satisfaction. Having a supportive wife has been a godsend. When we discussed my lack of desire and satifying her needs; she said she was very happy I was still with her with a promising future. I do notice the loss of muscle, trying to counter it with exercise.

REPLY
Please sign in or register to post a reply.