Why is the experience of negative SE’s of ADT so variable…or are they?

@handera
I did not have hormone treatments. My Decipher test came back low risk and my treatments was changed from radiation and hormone to radiation only.

Everyone will react differently to medications. That is why so much difference in side affects on individuals. I am on MCC weight loss and many have same question as why so many post serious side affects from the weight loss injections and some have very little and great success.

The same goes for statin drugs. Some like me have no issues with them and some have great pain and discomfort for taking them.

It is why each of us need to realize we are individuals and what another will expereince is their experience and not that we will have the same. When you read a drugs side afffects and read most common side affects that is what he majority are reporting when they do report which is not what all do so can be deceptive as all who take a medication do not report side affects or no side affects or degree of side affects.

From reading the posts of those who have taken I am glad I did not have to take them. I do read just like you some have minor side affects but the majority of posters cite significant side affects. Maybe we just hear the most from those with significant side affects.

I do know from my doctors at Mayo that hormone treatments do play a significant role in those patients that is warranted to prescribe. Helping reduce and inhibit the growth of prostate cancer cells is going to help with any treatment plan.

As with any pharmaceuticals we take, individual responses can vary. (If you’ve read the possible contraindications for aspirin, you’d never take one!) ADTs are very toxic pharmaceuticals.

In addition, there are many types of ADT - Lupron, Eligard, Prostap, Camcevi, Lucrin, Zoladex, Trelstar, Pamorelin, Decapeptyl, Firmagon, and Orgovyx. Each was made to improve over an earlier one, but each can have side-effects, which can vary more-or-less from man-to-man.

There is no such thing as zero risk. Even laying in bed and doing nothing carries risks; stepping outside has risks; eating, jogging, driving, yada, yada, yada,……nothing is zero risk.

As for minimizing ADT side-effects, it’s well documented that resistance-training exercise helps to minimize ADT side-effects in men. They first found this with menopausal women - resistance-training exercise minimizes hormonal imbalance side-effects in women. Men on ADT experience what’s called “male menopause” with similar side-effects as women going through menopause.

My medical oncologist warned me ahead of my first Eligard injection to begin resistance training exercise. Me being a gym rat, ramping up my exercise routine was no problem. As you indicated, my experience with ADT was a “breeze….walk in a park.”

This is a clinical trial that was done regarding exercise:
https://journals.lww.com/acsm-msse/fulltext/2023/04000/resistance_exercise_training_increases_muscle_mass.2.aspx
And a 2020 PCRI conference discussion about exercise: https://youtu.be/YE61HSAsFb0?si=sFdWbiZcfHrqfRY-

Yes, there are a number of drugs to counter the side-effects of hormone therapy, but then there are possible side-effects of those as well. (Pick your poison??)

3 months in with Eligard I have experienced hot flashes, libido loss and some fatigue, but all manageable. I am an active golfer and tennis player so that seems to help. I'm more concerned about EBRT (that I'm starting next month) and the long terms side effects.

I am one of those people that ADT is essential for. I’ve been on it for eight years, Stopped for eight months as you can see in a message I posted, because I never figured my Testosterone would come back after all that time. It came back fast, too fast, had to start Orgovyx again.

I am 77 and the Side effects don’t really bother me too much, I get hot flashes, but have things to do to reduce them, I have brain fog, but work around it. I walk on a track twice a day about a mile each and go to the gym three days a week. I started doing that when I found out after seven years that I could not get off the ground on my own any longer, My muscles just could not do it. Going to the gym reversed that in about four months. I get Zometa infusions every three months to keep my bones strong, I was on Fosamax for about five years before that for the same reason. I also have to take Myrbetriq To manage incontinence and four different types of drugs to manage high blood pressure caused by Zytiga. I also have to get blood test once a month, for seven years now.

Those are the types of things you have to live with if you want to live longer since the only way is to take ADT.

I live a pretty normal life and you would be pretty hard pressed to figure out I have had prostate cancer for 15 years, looking at how I live.

I did start off with a Gleason 3+4 But after Surgery it was changed to 4+3. 15 years ago when I had that they didn’t think about giving you ADT. I had salvage radiation 3 1/2 years later and again no ADT.

Excellent comment!

Read and watched your links….ramped up resistance training appears to be absolutely essential in minimizing ADT side effects and the key to your testimonial experience.

Interesting that the PCRI docs insist on compliance with this type of exercise routine CONTINUOUSLY through the entire time one is on ADT…or the “hit by a Mack truck” SE’s are all but inevitable.

It’s almost counter intuitive; since it’s well known that resistance training increases testosterone levels in men who workout simply to stay in shape.

I'm coming up on 4 years on ADT and Apalutamide. I stay active, eat well, spend time with people I care about, and generally appreciate each day for what it is. My side effects are non-trivial but tolerable, and they've lessened a bit over the years. Part of coping is attitude and lifestyle, and part is just luck, I think.

Perhaps not so counterintuitive. Resistance-training (like weight-lifting and other methods) can boost testosterone temporarily (~30 minutes) if you’re lifting very heavy weights with lots of sets, but there’s no long-term increase (otherwise bodybuilders wouldn’t need to take testosterone injections to build muscle). Which is also why one shouldn’t lift heavy weights immediately prior to getting a PSA test, since (in normal circumstances) PSA levels are tied to testosterone levels,

That’s interesting.

I read that permanent, but limited, testosterone level boosts are seen in men who are just beginning resistance training; but not those who are already physically fit due to ongoing resistance training. BTW: the only resistance training I do is a one or two sets of 10 push ups before every run….probably should do more….

Your comment about testosterone level versus PSA level is also interesting.

My May ‘25 testosterone level was 698 ng/dL; which is on the higher end for a 69 year old man.

Would that be another reason my PSA level, measured at the same time, was 5.79 (generally higher).

I know one’s PSA trend is more important; which in my case, topped out at 7.8, in May ‘23 (before diagnosis) and is now (20 months after diagnosis) at its lowest level yet measured (May ‘25).

Unfortunately, I did not have T levels measured until my last blood work up.

I exercised 3 hours a day while on six months of ADT but the mental effects for me were severe. Now I'm getting worried because my last dose of Orgovyx was more eight months ago and my testosterone isn't even low normal yet so I'm still having side effects. I was never told was even a possibility. They made it sound like "oh, you're young, you'll probably recover really fast." My pre-ADT testosterone was 600 and now it's in the 200s. At my last appointment, when I asked about it, the nurse said "cancer always takes something from you so just get used to it" implying that I'm never going to recover.

I'm the only guy in my support group who DIDN'T recover to normal T after Orgovyx so I still chug away exercising 3 hours a day while my belly gets bigger, my muscles stay the same, and I sleep 3 hours a day at most. For now, antidepressants are keeping me angry rather than sad so at least there's that.

It’s known that testosterone levels have a diurnal variation (testosterone fluctuates throughout the day, with higher levels in the morning and lower levels in the afternoon) so, PSA levels may fluctuate diurnally as well. (https://pubmed.ncbi.nlm.nih.gov/31390085/)

I try to get my PSA tested at about the same time each time (always in the morning).