Discontinuing 3 years of ADT therapy

ADT, it seems, is a necessary evil. Stage 4, Gleason 9, at age 73, I started with degarelix injections every month along with oral abiraterone w/ prednisone, then had IMRT with SBRT to a mets spot on RT iliac. After two years and a switch of physicians, I had two 90-day Eligard (Lupron) injections. Then I said, "Enough!" That was one year ago and symptoms aren't much different today, other than fewer hot flashes (but not gone). Lack of stamina is the big thing, loss of muscle, muscle aches and pains especially in my glutes and hamstrings and peripheral neuropathy with some numbness in lower legs and feet. My anemia remains - hemoglobin was 13.2 when I started ADT; it dropped to a low of 8.4 and is on a very slow incline ... up to 11.5. Testosterone is almost the same ... it started at 433, dropped to 3, and has risen to 23. But, PSA remains undetectable. I'm grateful I live in a time when they are getting so much better at treating this scourge and prolonging one's life. But it doesn't mean I'm liking the side effects of the treatment even after being off the stuff for a year.

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

My last testosterone level dropped from 122 to 115. My 3-month history since stopping Lupron is 6.9, 8.7, 122, 115, with my next check in July. Historically over the last 10 years, with ED, my testosterone has been 296, 208, 341, 341, 227.

I went off it two years ago, & almost didn't notice it, except for the increase in interest of women.