Anyone been able to get off meds with metastatic prostate cancer?

@mjm8491
I’ve heard from many people that have refused ADT. The results are quite varying. If somebody has a low Gleason score and no aggressive issues ADT can make no difference in many cases. People with more advanced cases can have their cancer suppressed for a couple years so they don’t have it spread and grow. There’s just a wide range of answers to that question about the results of not doing ADT.

If someone has radiation treatment doing ADT can be beneficial for a few months to help get the cells to die.

If someone has a very major case of prostate cancer that keeps coming back, then ADT for the long-term can be essential. I’ve been on it nine years because I have BRCA2 and my cancer keeps coming back if I cut back on drugs. Someone that has major metastasis right off the bat and a high Gleason score and PSA can have their cancer suppressed and prevent prevented from spread spreading by being on ADT. But when those cases they Usually are on an ARPI as well. I’ve been on one for almost 7 years.

@jeffmarc
Interesting, 9 years, wow. If I may ask, how old are you now?

Thank you jeffmarc I think I'll just continue on my nubeqa and eligard. I have a lot to live for course I know there are no guarantees cause God is the only giver and taker of lifr

@mjm8491
I’m 78 I’ll be 79 in a couple of months.

I was diagnosed at 62 had surgery 3 1/2 years later radiation. Three reoccurrences later I’ve been undetectable for the last 34 months on Orgovyx and Nubeqa.

I found out four years ago I have the genetic problem of BRCA2, which explains why it keeps coming back.

@jeffmarc
I'm starting 28 radiation treatments on Wednesday, considering 6 months of Orgovyx. How is it working for you, and what does Nubeqa do? I'm also 78, 79 in January. I'm concerned about muscle and bone loss, since I already have mild anemia and osteoporosis.

@mjm8491
Well, you have to realize I’ve been on ADT for nine years. I don’t get the fatigue or any mental issues from it so it’s not a problem for me to take it. I’ve been working with another guy who is 71 and he had no problem at all getting on Orgovyx. Side effects really didn’t bother him.

If you’re only going to be on at six months, it’s not going to make a big difference. You might have Short term side effects like below, but it’s not going stay that way. As long as you take Orgovyx Your testosterone will come back quickly so you won’t have to suffer long.

All of these below things really only affect you if you stay on it for longer than six months.

I do have to exercise regularly. I walk a mile twice every day. I do weightlifting exercises.

That’s because it weaken your bones And also makes your muscles very hard to keep and very hard to retain what’s left of them. I started off going to the gym three times a week and was able to build up my muscles a little bit.

I am Osteopenia, I have taken bone strengtheners for about 8 years. I was on Fosamax for six years And then Zometa injections every three months for two years. That has kept my bones strong.

Considering you already have osteoporosis your doctor should get you on a bone Strengthener soon if you’re going on ADT.

I wouldn’t guarantee that it’s gonna make you more anemic. You just have to do it and find out what’s going on. My white blood cell tests are great, red blood cells hemoglobin a little bit low. It doesn’t affect everybody the same way.

@mjm8491 How severe is your PCa (Gleason, etc.)? Even with resistant exercise and supplements you will still lose some muscle & bone. I went from high normal to mild anemia on Orgovyx. The older you are and the lower your base testosterone the more likely it will not come back. Orgovyx gives the best odds & quickest recovery. Much worse with Lupron. It is a benefit vs. harm decision. No right choice for everyone.

@jim18
How long were you on orgovyx?

I did want to say my most recent psa .001 and I thank God for;He has been so good to me.

Howdy all,
68YO, started with stage 3 Gleason 8 5 years ago. 'Moved to external radiation and ADT. It worked for a while then metastasized. 'Then went to chemo (Taxotere) with Eligard. Cancer was in remission for 1-1/2 years then came back (L4 and the prostate itself). I'm now on the 4th infusion of Pluvicto and it is showing efficacy, reducing the PSA, yet the T rises. I have, in the past on several occasions and now during the Pluvicto, suspended the ADT (Firmagon). I'm moving to Orgovyx as soon as...when/if it is approved by insurance....if not, the Firmagon belly injections (quite painful, but super effective). Some say time off is good, some not. For me...I know my body and the combinations are too much at times (CV issues). I will, most likely, be on ADT for the rest of my life...it's okay...better than...you know...

Like some have posted, I have been extremely fortunate with the side effects of all the various treatments. Red cells down, but not significantly so. My most concern is the CV side effects. There I've not been so fortunate, narrowly avoiding heart failure (I have a pacemaker now) and, later, narrowly avoiding a major stroke (that resolved quickly). The Pluvicto exhausts me almost completely and, as a singer, the dryness of the mouth and throat bothers me, but not so much knowing the efficacy...

I reviewing these and other posts, we all have to accept the fact that treatment is something we have to go through and "suffer" the side effects. It's no picnic for sure...'Just keep the faith, do your research and make sure you have a good open communication path with your oncologist...And STAY POSITIVE!!

Blessings to all!