Discontinuing 3 years of ADT therapy

Mine was similar after two years. It was a little weird for sure but subsided. Now off it for 2 years and the only thing that seems to remain is the occaisional hot flash, maybe one a week or so at night, and, stubbornly low testosterone, it has risen a lot since the low of around 3, but still a little lower than "normal."

Hang in there hopefully you'll recover soon!

Thanks for the encouragement

Hopefully, a short-lived result of the sudden change. I, for one, would be willing to fight some nervous system disruption to be able to get off this crap. Only been on for a year at this point. Best wishes for a speedy resolution.

@web265 your medical statement about ADT, hot flashes, low T are identical to what I experienced.

After being 11 months off Lupron which I only took for 4 months, I have had horrible side effects and believe that Lupron would have killed me if I went beyond 4 months. My side effects, aching head, bones, joints, and muscles made hot flashes seem like a vacation to celebrate. In the last month the side effects have begun to significantly subside. I will never go near Lupron again. I have a number of medicine allergies so my reaction may have been worse if i am allergic to Lupron. From all I have learned, ADT pills are much safer because you only get a daily dose and. only need to take the minimum to be effective

Good to hear you got off of it. Let us know in six months or so how you are doing. I know it can take over a year to get back to even close to normal testosterone. You should get it, checked every three months to make sure it is rising. After being on it for seven years, my PSA rose to 50 in eight months, It was rising pretty steadily, but it was going to take a long time to get back to normal. Hopefully, yours rises quicker. People on Orgovyx Get their testosterone back much quicker.

I’ve been on ADT for eight years and I’ve had no real major issues with it. It does give me some hot flashes, but after so many years, they’ve really lightened up. I’ve taken bone strengtheners for seven years and go to the gym three days a week to make sure my muscles are at least not deteriorating any further. Those are the real problems I’ve had with it.

It makes me wonder when people say they have such problems with it. What’s really going on? Nobody, I know would even guess I had been on ADT unless I tell them.

When you say it puts your whole nervous system out of whack, how do you actually feel? Since I don’t experience anything like that, I really would be interested to hear specifics. That way, I could warn people that those particular problems could be encountered.

@jeffmarc I appreciate your comment... I've been off Orgovyx for several months and PSA went up to 6.7 from half that... medical 'onc' thinks I should stay off for the Summer or be miserable; and because T did NOT recover (it's at 32 only) he says it's not much fuel to the local tumor anyway. I'm over 80 and I suppose since it didn't spread; maybe I do nothing... ever... hmm.

@seer

You have had your PSA get up to 6.7 that quickly? I would really question a doctor that let that happen without doing some sort of treatment. Have you been planning on getting a PSMA PET scan real soon, That would seem to be essential at this point.

I know a lot of people in their 80s that are on Nubeqa (Darolutamide) alone. It just works well, even if you have high testosterone, which you may never have. The benefit of that drug is that there are no side effects for most people. You really ought to talk to your doctor about that and I think you should probably be Getting a second opinion from somebody with expertise If the doctor is unwilling to get some treatment or testing done. Allowing your PSA to get so high, is not a positive thing. That can allow metastasis to grow and start giving you bone pain. You do not want to go there.

I know people that have started off with Gleeson nine and had multiple metastasis, had years of treatments,,and have finally settled on Nubeqa in their old age (I’m 78) And are really happy with it.

Don’t let your PSA get too high. That means something is growing out there. You need to be proactive to stay healthy. Don’t let your doctor push you around.

Thank you .. I appreciate everything you said. I was Gleason 8 originally and my PET/PSMA test about 6 weeks ago was still localized. I have had no radiation .. pressure from me and perhaps because I had 3 heart procedures and am trying to balance things. The doctor is a Medical Oncologist who knows I'm focusing on QOL.. at the moment my next PSA test is August and I see him then... I suppose I could move it forward. He knows I'm fairly weak from 'other stuff' going on; and yes I think your Nubeqa may be a good idea. I asked him about 'steam' (the advanced version of Rezume from Francis Med.) and he said not appropriate for my situation. Did not mention Nubequa, but he did say once he has a baseline in August there are 'other things we can do'.