Hormone Treatment Experience

I took just 4 months of Orgovyx that completed about 1.5 years ago. I eat well, exercise daily and play pickleball and golf. After one year, my Testosterone did not fully recover and my team agreed that I could take supplements. My fertility RO prescribed TGel and Cialis. My T returned to normal and I'm in the process of weaning off both drugs. My PSA was stable during this time.

Compared to many others, 4 months is 'ADT light'. Sadly, I still have not recovered from the main 4 side effects: Belly Fat (gained 10 lbs. eating a healthy Mediterranean diet and drinking less); Hot Flashes: definitely still happening; Energy/Strength: struggle to run (5-10K) distances as I could before ADT; ED: about 80% of normal.

I'm trying to understand how these side effects could still be so active when I clearly had a 'light' version of ADT. I'm meeting one of my Dr. team on Monday and, if I don't get a suitable reply, I'll check with some of my other doctors. The literature on this topic is all over the map, hence, not useful. (Disclaimer: I'm grateful not to need more intense treatments at this time...just want to understand what's going on and maximize QOL like we all do).

I was on ADT (Lupron, Abiraterone) for 3 years. I’ve been off for 10 months. I still have all of the side effects except high blood pressure and high blood sugar. I fixed the ED problem with IPP surgery and my testosterone is SLOWLY returning. It is now 67. Since I did not lose my libido while on ADT, my wife and I continued sexual relations without penetration the whole time ( we called it lesbian sex). We are now able to have the real thing. Since I don’t know whether I will have to go back on ADT, I am doing my best to learn how to live with the side effects. It is not easy, but I feel that I am making progress.

My experience after 7 weeks on ADT is very similar and I believe that my diet, daily exercise and D and B supplements have greatly contributed managing side effects. It’s early on but I’m optimistic about minimizing side effects.

Good to hear! I also try to deal with the side effects, which for me means continuing to understand their causes and best remedies. I'm making a list of questions for my Monday urologist meeting and plan to tell him that I'm disappointed that, with Testosterone back in the normal range, the big 4 are still in place:
- [ ] 10 lbs. belly fat with same or better diet/drinking
- [ ] Energy/Strength: can’t run for long; prior to ADT able to run 5/10 K
- [ ] Still getting Hot Flashes
- [ ] ~80% erections; less concerned than above

My questions will be:
- [ ] Do all symptoms result from 4 months of Orgovyx, i.e. not from radiation?
- [ ] Best ways to lose weight? (Yes, I know diet and exercise)
- [ ] Are there any other non-drug/non-invasise ED methods, e.g. Acoustic wave therapy (AWT)
I have had very good results treating bone spurs/achilles tendonitis with Acoustic wave therapy, also known as extracorporeal shockwave therapy (ESWT). Think of it as meat tenderizer...it smooths the tissues.

BTW, I was surprised that I also didn't lose libido even when my T was super low...I guess it's hard wired in some of us.

Good to hear! I also try to deal with the side effects, which for me means continuing to understand their causes and best remedies. I'm making a list of questions for my Monday urologist meeting and plan to tell him that I'm disappointed that, with Testosterone back in the normal range, the big 4 are still in place:
- [ ] 10 lbs. belly fat with same or better diet/drinking
- [ ] Energy/Strength: can’t run for long; prior to ADT able to run 5/10 K
- [ ] Still getting Hot Flashes
- [ ] ~80% erections; less concerned than above

My questions will be:
- [ ] Do all symptoms result from 4 months of Orgovyx, i.e. not from radiation?
- [ ] Best ways to lose weight? (Yes, I know diet and exercise)
- [ ] Are there any other non-drug/non-invasise ED methods, e.g. Acoustic wave therapy (AWT)
I have had very good results treating bone spurs/achilles tendonitis with Acoustic wave therapy, also known as extracorporeal shockwave therapy (ESWT). Think of it as meat tenderizer...it smooths the tissues.

BTW, I was surprised that I also didn't lose libido even when my T was super low...I guess it's hard wired in some of us.

I exercise at least one hour daily (intense yoga 3x, weightlifting 2-3x, running/hiking daily), eat a low-carb, high protein diet with only fresh foods (no processed) and meditate daily. I have not gained any weight and the exercise helps with the depression. Once your testosterone level drops to zero or < 4, you may have ED. Consider IPP surgery. I just wish I had done it sooner. I also take Calcium with D3 1200 mg daily. Stopping caffeine has helped with the hot flashes and I don’t drink alcohol. Waking up 2 or 3 times a night with hot flashes really sucks! Keeping a positive attitude as best you can and remembering that you are at least not dying of cancer this week helps.

Is there a particular form or product you have found that works for getting both Calcium and D3 or do you take both supplements separately?

Is there a particular form or product you have found that works for getting both Calcium and D3 or do you take both supplements separately?

I’m 77 going 78 I’ve been on ADT for eight years. It’s really something that most people can manage. For me, it’s not a big deal, It has kept me alive in the last eight years.

When they want to do radiation, they want to try to limit how much radiation they give, If they can get you on ADT, ahead of the radiation, it can shrink the tumors and stop them from growing. They probably won’t want you on it more than six months because of your age.

You could tell your doctor that you want to go on the estradiol patch, Instead of ADT. According to the latest study in England, it’s just as effective as ADT, but has many fewer side effects.

Not sure if you saw this video, it discusses over treatment of people in their 80s

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