Discontinuing 3 years of ADT therapy
Coming off of 3 years of ADT therapy. Never knew it would be this hard. My entire nervous system seems to be out of wack.
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Coming off of 3 years of ADT therapy. Never knew it would be this hard. My entire nervous system seems to be out of wack.
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
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!
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4 ReactionsThanks 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.