I Googled how long does it take for 3 years of Lupron ADT side effects to subside. Man, the only posters were soooo negative. I am maybe 3 weeks after when my next shot would've been due. What can I expect? I really want my T to start returning as my muscles are like NERF balls, although I go to LA Fitness almost daily walking a mile to start, doing 10 to 12 upper body and stomach machines then a mile to end. No muscle building is my biggest negative, while night sweats and hot flashes are regular and the only good thing is no body odor.
Just want some possible timeline from experienced people.
Other than that I'm happily going through life, which after diagnosis and during radiation seemed impossible.
Thanks, Doug
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It is very varaible. Most patients will recover normal levels of testosterone during the first year after stopping Lupron. Some patients never recover normal levels of testosterone and some remain at castratation levels forever, what the MOs call "free lupron".
You might adjust your expectations a bit depending on what type of ADT you were receiving, too. If one were getting a 6 month depot shot of Lupron, for example, of course it would be expected to be taking effect for at least 6 months after taking the shot, and then probably for some time afterwards as it starts to wear off. The wash-out & recovery time might be shorter if the ending ADT were 3 month or 1 month depot shots.
Just as an aside, I noticed this about the men in the study Tall Allen referenced: "Short-term adjuvant ADT lasted for (only) 9 months and consisted of goserelin acetate 3.6 mg subcutaneously or triptorelin acetate 3.75 mg intramuscularly every month, and bicalutamide 50 mg orally once a day." Their washout timing and testosterone recovery time after the monthly treatments could have been sooner than for those who may have taken longer acting Lupron-depot shots, possibly for longer periods of time.
(Anecdotally, I've met a man in a support group who has reported taking quite a few months after the 6 months following his final 6 month depot Lupron shot for his Testosterone levels to build up again, and for some of his symptoms to subside. His ADT treatment response seemed to be in the upper range in terms of the amount of hot flashing he had, and in the impact on his ability to keep working and maintain his strength and endurance. He said that if he had to do it over again, he, personally, would avoid 6 month shots and start with 3 month Lupron depot shots to begin, and maybe end with a couple of 1 month shots, in hopes of minimizing recover time.)
(On the other hand, I've met other men who have reported recovering their baseline Testosterone in shorter periods of time, with few lingering and bothersome side effects. )
I think it's Great that you are still doing the amount of regular exercising and walking you have been doing, despite having been on ADT for 3 years. Keep it up!
Thanks! Soooo many variables -- but am happy to be OK. Glad, too, that I continued exercise for the 3+ affected years of Radiation and Lupron. Will check out what my T was at start. Gained about 20 lbs during the run but have lost 22 in last 8 weeks due to increased will power. Made up my mind that I didn't want to weigh 200 as I approach 80 just on general principles for knees and ankles.
WooHoo! Approaching 80, losing the excess ADT weight with lots of will power, still doing all the exercising... Fantastic!
Boy I can relate to you Wdoug .. I have the same symptoms after over four years of adt .muscles what’s that? Good working out and staying active . Take care ..
I’ll be checking in on you Doug. From one Doug to another, I’ve been doing ADT for 2.5 years but don’t see an end for the time being as its working so well on the PSA so far. I have to work hard at it and I’ve set my own weight limit w intense exercise and careful diet. Maybe one day I can take a vacation, too. God speed! Doug.
Thanks, I've done much better than I anticipated 3 -6 months after diagnosis with APC. And now am looking forward to next phase with T booster. My Dad and his Dad died from PC and later complications and spread. Technology is on our side now days with regular blood tests, etc. Good luck to you!
I've been trying to get a straight answer from my docs but the best I get is, "everyone's different." "It depends." "Just going to take time." Blah, blah, blah.
The docs' responses were even worse when I asked about specific side effects - how long will it take for these to disappear? Doc, things like, um, wt gain, joint pain, higher BP, bone density, genital shrinkage (there's one that remains elusive...not liking having grapes for balls! will they return to pre-treatment size?), hot flashes, emotional volatility/depression/grief/crying jags, flab for a gut and butt, fatigue, and so on.
Btw, I wonder if the return time varies by type of treatment (RP vs. radiation)? Can anyone respond to this?
I, too, began exercise almost immediately after first injection of Firmagon. Docs switched to Lupron; 3 three mo duration. I had 25 IMRT and brachyboost concurrently.
I have no idea if exercise has/is helping at all (all of the side effects listed above have occurred even though I exercise 5-6 times/wk. 3 days of machines, resistance, high impact and 2-3 days of cardio treadmill, elliptical). The only noticeable plus for me is the emotional one; I seem to feel more even and to feel "better" when I exercise.
So, good luck to you. Sounds like you're doing really well and your hard work is paying off.
Thanks, hey, you really do work out! Wishing I could do 100 flights on stair masted 3X per week like I did 3 1/2 years ago, but it's time I accept where I am and quit comparing to pre cancer days. To me exercise is pro-active, keeps blood and whole body going. I was looking forward to moving rapidly past the side effects of these last 3 years, but guess not. I do wish fatigue would subside and maybe with time as it has bothered my asthma I think.
Mine were more like jelly beans in a sack. ADT for life forecasted acct. wide spread stage 4. Had the snip-snip. No more ADT or its worst side effects.
Keep at it, Doug. Reading through this has reminded me I need to do more. I added 20 lbs since starting Lupron in 2017 (last shot was Jan. 2019) I ride my bike home from work as many days as I can (3 miles up hill) and I'm getting some wind back (I used to ride a lot when younger, 64 now) But I need to add some upper body work.
Let me rephrase that. I don't need to do more, I get to do more.
The longer you are on ADT, the longer the recovery time will be. The 'half life' cycle can give you a ballpark figure.
IF you do at least 2 consecutive years of ADT, depending on your age, it is possible that some long term effects become permanent.
I stopped ADT last July (2018). Was scheduled for my 3 month shot at that time. but the side effects became too much for me.
Today, a year later, my 'T' has barely recovered to the lowest end of normal (8.0).
My PSA has 'recovered' to 0.06 (that's a good sign).
Perhaps, in my case, I'm not typical - so I don't know how HI my 'T' will go - hoping for a 'mid range' value or better. My libido is still in limbo somewhere.
At age 67 and in reasonable physical condition - but wrestling with ED after RT / ADT
Time will tell - at least the hot flashes are basically a thing of the past (on most days at least).
Regaining muscle mass, playing golf, sleeping better etc etc,
Amazing that you were on ADT for three years! I hope it and other tx nail the bastard. Exercise will help recovery but it could be a very long haul . Good luck.
It’s very controversial to put it mildly. Google Dr Morgentaler re his thoughts on who qualifies. Also Dr Denmeade at Johns Hopkins who is running clinical trials.
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