Anyone take a Treatment Holiday? Intermittent use of ADT (hormone Tx)

I'm being treated at Mayo Clinic Arizona. I'm 76. I was diagnosed in 2015 ... no symptoms. My PSA was 16 in Gleason score 4+3. Had surgery and the cancer had spread outside the prostate but not to the lymph nodes. I was good for 5 years and then the PSA began to rise. In December of last year, the PSA reached 2.4 with doubling time in less than 10 months. I opted for Orgovyx over Lupron because it is friendlier if you have cardiovascular disease and I do. In fact, I'm scheduled for surgery at Mayo on 28 January to repair 2 aortic aneurysms and open up my femoral arteries (I'm having difficulty walking).

My oncologist's protocol is Lupron = 24 months; Orgovyx = 12 months, then a holiday. It is an established fact the longer you're on ADT; the odds are increased you may become resistant.

I had the common side effects on Orgovyx, ie., weight gain (about 15 lbs), fatigue, hot flashes, muscle mass loss.

I'm scheduled to see the oncologist on 21 January and blood workup. She told me if the PSA rises and gets to 1.0, I'll probably have to go back on the Orgovyx.

BTW ... I had 35 treatments of radiation after surgery

Tehill, so sorry you are going through all this. Did you have ADT along with your radiation after surgery?
The role of ADT is somewhat controversial, but it seems that Gleason 4+3 Unfavorables have better outcomes if ADT is added to the mix.
But you can never know if it would have made a difference in all cases. Best of luck on your cardiac procedures!
Phil

My story is familiar to some on this forum.

It is my experience, given the heterogeneity of this PCa and our lifestyles, access to insurance, medical teams....my experience may not be yours.

It was about three weeks after coming off 12 months of Orgovyx in April this year that the fatigue and muscle stiffness went away. The hot flashes, well like fat cells, much more stubborn, probably three months, same with the genitalia shrinkage.

Note from my clinical history that my T recovered to 100+ then 400+ quickly.

Why did my T recover, well, that is an advantage of Orgovyx or say Lupron. Still, even after 18 months of Lupron it recovered in a very similar fashion.

Neither I nor my medical team can point to any specific reason though we have seen articles about the role exercise may play.

I'm pretty active, most days I go the gym, do the indoor bike, lift weights, swim. I go skiing with friends in the winter, hike in the mountains, ride my bike outside in the Spring, Summer and Fall.

I never lost my libido or suffered mental issues with depression or forgetfulness. My wife just shook her head at the former and would disagree on the latter.

Why, again, the role exercise may play in mitigating side effects. The only difference in my lifestyle while on ADT versus off was not in what I did, it was how I felt doing it.

During the 12 months on Orgovyx my wife and I did the Ring Road in Iceland , the Oregon Coast and Columbia River Valley, Sand Hill Crane migration in Nebraska and ride the Garmin Unbound 50 gravel bike ride, well, 55, in the Flint Hills of Kansas near Emporia which had some 8-10% grade hills.

My story...

Kevin

At my diagnosis, 2015, Orgovyx had not been approved yet. I declined Lupron. We try to make informed decisions. I'm not one who generally second-guesses their choices after the fact.

That’s always been the hardest part for me. So my tendency is always to overdo anything “just in case” - even though that scenario hardly ever happens.
But even if you didn’t do ADT back then, studies show that the outcomes are the same even if you do it now, so it’s all good!

38 radiation treatments, 6 months on orgovyx ended Nov 30 and I am still having all the side effects. My T is not increasing much at all, was expected to be much higher. Now more testing. If I hear " everyone is different" 1 more time.......

I understand it but I don't like it

Hot flashes, terrible fatigue, memory issues, and most of all muscle loss. I have been doing construction work all though this journey and it is catching up to me now.

OK, I won’t say it….but I am surprised that your daily physical work has not helped you that much - IF by construction you mean you are digging trenches, lifting heavy pipe, etc all day.
My father was in construction all his life as a sheet metal worker on the jobsite. Mostly in NYC on high rise office buildings. He rose at 4:30AM, would come home exhausted every day, eat dinner and go right to sleep.
Yet, with all that he was no Mr America! Pot belly, no large pecs….but his hands and forearms were scary from cutting that sheet metal with shears I could not even lift!
If he were a foreman or drove a backhoe I’m sure he would have been downright fat (the man could eat and drink!) and in terrible shape. But many days he had to walk up and down 20 or 30 flights of concrete steps because the lift wasn’t operating.
I guess my real question is this: is your construction job involved with burning a lot of calories or giving you an aerobic challenge? I know that sounds absurd and maybe condescending (you’re in construction!!) but I don’t mean it to be.
Just saying that heavy physical exercise really DOES lessen the effects of ADT - even afterwards. So if you’re not really doing the physical work, you really need to exercise at some point during the day - even brisk walking - to raise your metabolism. It worked for me and many others on ADT and that is one way in which we are all NOT that different.

I am a carpenter and I'm 67 do about 4500-5000 steps a day with severe arthritis in both knees. At 67 I got away from the digging part years ago, I make and hang cabinets, drywall, trimwork , exterior trim etc. Lots of bouncing around people houses all day, back and forth to the truck all day

Yeah, I have friends in the trades so I know what you mean about bouncing here and there. No way you can sneak in even more exercise given what you do all day. And having arthritic knees (my father needed a double knee replacement at age 72) there’s not much more you can do.
A month off of Orgovyx does not mean you will feel instantly better. They say the side effects after stopping do not take as long to go away as with Lupron but it still may take up to 6 months until your body fully readjusts itself to your ‘old’ normal.
I have heard others complain of the same thing but then report that it started to quickly get better after the first 6 weeks or so. I won’t know myself for about another 30 days; then I am done. But aside from the hot flashes and a voracious appetite, I have not had much in the way of bad side effects as you have had. I did increase my exercise to daily walking, cycling and some weights, but at age 70 I am retired and have the time for it. You, unfortunately, are still working - doing heavy physical work - so it really is hard for you right now.
All I can do is encourage you to not put a time limit on when you should start feeling like your old self - it’s like watching that proverbial pot of water coming to a boil! It WILL happen and when it does you’ll know it! Gotta be better in 2025, right?