I need help/advice re: HT side effects.

Richard good afternoon, All I can really say is hang in there. I was on Lupron for 6mo my last 3mo shot Jan 19th. right now I am almost back to normal in all respects. The fatigue and lack of interest in sex is definitely a real but I can attest that it will pass or at least it is beginning to for me.
Good luck
Perry

Hey Richard - I feel ya.

I was on it for three years. Three. Long. Years.

The fatigue was really the worst. It got worse during the first year, but stabilized after that. I was tired all of the time. Sleep would come easily just by simply not trying to stay awake. Staying up past 8:30pm was really hard to do.

Some level of exercise can help, but man I had no interest in that at all. In the third year, after being diagnosed with osteopenia (low bone density), I forced myself to work out for bone strength. It was never easy, and I couldn't make any progress at it. Couldn't increase resistance, couldn't increase reps. Aerobics and some moderate weights were the best I could do. I suppose that helped, but not a lot.

HT is really hard on one's sex life. Unimaginably so. Seemingly, indescribably so. It's funny, no matter how often you attempt to describe zero interest in sex, no one can really grasp what that means until they experience it! Zero means zero. As in not there. A complete lack. Not on the radar.
Not in the back of your mind, not in there anywhere; except maybe in a dusty box of memories on a shelf like old photo albums. Not like you've experienced any time at least since puberty. Not like your prior level of "zero", not like, "well we just did it last night so maybe in another day or so". No, not that kind of temporarily lowered interest, or recovery period. Oh no. It's way different.

My hat's off to our forum members who are on it for the long term. It's not to be underestimated!

Fortunately, in my case almost all of that resolved as my testosterone recovered, blessedly quickly.

I don't know what the difference is between the various first line ADT medications - Eligard, Lupron, Zoladex, are there others?

I was on Zoladex for 12 months and finished about 18 months ago. I restarted, again on Zoladex, about 5 months ago. I have NOT experienced any fatigue. Loss of libido and hot flushes definitely, but no fatigue. I walk about 2 miles every day and play golf at least once and sometimes twice a week. First time round I also gained some weight, but this time I was prepared and have been watching my intake carefully and so far no gain.

Now I don't know if my lack of fatigue is because I took Zoladex rather than Lupron or Eligard, but I know of two others that have also taken Zoladex and they too had no fatigue. On this forum it seems that most have taken Lupron and there is wide complaint about the fatigue issue, so MAYBE, it would be worth talking to your Dr about the possibility of trying Zoladex as an alternative.

I readily admit I have no idea of the chemical makeup of these drugs and why I should suffer less than others, but it is what it is.

All the best, Chas

Apparently everyone is different when it comes to side effects from ADT.
I have a friend who is 4 years older and since his prostate cancer was not discovered until it had spread to his bones. PSA = 200.

He is on Lupron but has not experienced any fatigue / stamina side effects. He plays tennis singles for several hours a day.

In my case, with Eligard, especially on a hot day, I get tired after mild exercise. Walking a few blocks and I become exhausted. I was hoping that exercise with weight training would help.

3 more months. I hope it gets better.

RichardNY said...
Apparently everyone is different when it comes to side effects from ADT.

Indeed. I'm in my 8th month now and the SE's have been consistent... terrible hot flashes and night sweats plus crippling emotional mood swings (both somewhat controllable with venlafaxine), joint/muscle pain, bone loss (osteopenia), muscle loss, serious mental fog ("Lupron brain"), loss of interest in almost all activities... heck, loss of interest in all interests... including zero interest in anything sexual. Seeing an attractive woman dressed provocatively is a mere curiosity. Redwing put it perfectly...

Redwing57 said...
HT is really hard on one's sex life. Unimaginably so. Seemingly, indescribably so. It's funny, no matter how often you attempt to describe zero interest in sex, no one can really grasp what that means until they experience it! Zero means zero. As in not there. A complete lack. Not on the radar. Not in the back of your mind, not in there anywhere; except maybe in a dusty box of memories on a shelf like old photo albums. Not like you've experienced any time at least since puberty. Not like your prior level of "zero", not like, "well we just did it last night so maybe in another day or so". No, not that kind of temporarily lowered interest, or recovery period. Oh no. It's way different.

Additionally, some loss of stamina and endurance (possibly due to loss of muscle mass) but fatigue no worse than one would expect while undergoing treatment for practically anything medical. Most recently, and possibly with the aid of radiation, losing abdominal body hair, giving me a cute, prepubescent boyish appearance. Curiously, TOTALLY ABSENT is any weight gain or gynomastia (man boobs). I consider myself fortunate in that regard. There's probably a few other SE's that I haven't experienced, but how would I know unless someone else mentions it?