Orgovyx Holiday

After six months of Orgovyx, it took about a month to start feeling better. After two months, my PSA was .09 and my testosterone was 270, so almost low normal. My next PSA and T tests aren't until March. It might take a bit longer after a full year--I don't know.

I’d be curious to know more about your diagnosis and initial number of months you were scheduled for ADT.
In my case I am stage 3 with local spread into lymph nodes and have had 8 weeks radiation and am 9 months into scheduled 24 months ADT (Ordovician + Abberaterone).
I dream of getting off ADT and have discussed stopping at less than 24 months as long as my positive PSA numbers stay low consistently (last read was 0.03.
Thx

That should say Orgovyx above

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.