How long do Lupron side effects last after treatment concludes?

Posted by jbuuck @jonbuuck, May 10, 2021

I've been on Lupron for two years. The treatments have ended. How long do the side effects last? Thanks for any insight you can provide.

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Profile picture for eldorado80 @eldorado80

Update:
I decided to get a baseline testosterone reading going forward now that I have decided not to take the 3 (out of 4) additional Lupron Depot therapy injections. The results just out < 20 Total T so have my work cut out for me. Normal is
I have/am experiencing all of the following side effects I’m optimistic that with diet and exercise over time T will return to normal range. Normal is approx +150-800 for a male my age.

In males, lower testosterone levels can lead to:

hair loss
a reduction in muscle tone
more fragile skin
a reduced sex drive
mood disturbances
memory or concentration problems

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I am 73 and pretty much all of the conditions you describe are present except hair loss. PSA has been < .1 since my radiation therapy in 2016-17. My T is as low as my urologist has ever seen but I can still lift my 850 lb motorcycle to an upright position and do all my normal chores around the house and as a volunteer in a state park. I just tire a bit more easily. I can live with that.

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Profile picture for Sarmajor @sarmajor

I am 73 and pretty much all of the conditions you describe are present except hair loss. PSA has been < .1 since my radiation therapy in 2016-17. My T is as low as my urologist has ever seen but I can still lift my 850 lb motorcycle to an upright position and do all my normal chores around the house and as a volunteer in a state park. I just tire a bit more easily. I can live with that.

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Here's an update to my previous posts if interested. All the best to you.

"Exactly 1 year since 45mg Lupron hormone therapy injection that was followed by 20 radiation sessions. 90 day post treatment PSA test showed no cancer but I was left with several side effects. Decided not to continue Lupron injections, exercised daily and dieted with hope of returning testosterone level to normal from a low reading of < 20.
I am pleased to report one year later that retest results today show testosterone at 396 in a normal range of 240-899. Side effects from original loss of testosterone appear to be slowly subsiding. The worst side effect reported earlier is incontinence ( I prefer to call it "back door plumbing") and is still present. I believe this was caused by the radiation treatment and am hopeful it will normalize soon. "

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Three weeks ago my psa rose again and it is clear that the continuous luprolide was not going to work. I had a PETCTpsma scan which indicated that i still have only three tumors in my pelvic lymph nodes, but that one of them is growing ( although slowly). No indication of the cancer in any organs or bones at this time. I will continue the luprilide every three months and have now added 160mg of Enzalutaide daily. I will return in a month 6 weeks to test my psa, liver and kidneys so see that they are tolerating the medications. Side effects are significant, at times, but so far limited to hot flashes, lower leg pain and increased tiredness. While my daily coffee doesn't appear to be a problem, I enjoy a drink on a friday and saturday night if we go out and that does tend to set off the hot flashes at about 2am. I also tired more easily and will try to increase my excercise more.
Time will tell how my body adjusts, and subsequently how I will need to adjust.

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Profile picture for ken1946 @ken1946

I was on for two years. Nothing has come back yet. I have been off for a year and a half. I am 75. My urologists say I ought to be thinking about stuff other than sex. I had RP first and then 44 photon radiation treatments as well. All made me shorter and contributed to my ED.

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I would look for another urologist. There is a lot of ageism in doctors who assume older guys aren’t interested in sex. Maybe talk to a sexual health doctor too. Just saying to think about other stuff is not an acceptable answer IMO

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I had one shot of Luperon then did 28 days of radiation. I’m due for the 2nd shot now but I’m having second thoughts. Getting a PSA test next week (the first since radiation) to see where I’m at. My urologist doesn’t give me much feedback and just says “stay on the Luperon forever” ??? I guess I don’t understand that if the PC is gone, (if PSA is 0) why keep taking a drug that has so many negative side effects. I already am pre-diabetic and have some low kidney problems and it seems like Luperon will negatively affect these. I’m experiencing some muscle loss and some testicular shrinkage already and wondering if it can be reversed if I stop the Luperon?

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Profile picture for mvc @mvc

I had one shot of Luperon then did 28 days of radiation. I’m due for the 2nd shot now but I’m having second thoughts. Getting a PSA test next week (the first since radiation) to see where I’m at. My urologist doesn’t give me much feedback and just says “stay on the Luperon forever” ??? I guess I don’t understand that if the PC is gone, (if PSA is 0) why keep taking a drug that has so many negative side effects. I already am pre-diabetic and have some low kidney problems and it seems like Luperon will negatively affect these. I’m experiencing some muscle loss and some testicular shrinkage already and wondering if it can be reversed if I stop the Luperon?

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If he really said “stay on Lupron forever” get away from this guy/gal ASAP!
You did not mention your diagnosis - Gleason, stage, etc. Did you also have surgery first? Those factors will have a big impact on how long you need to be on ADT.
Your urologist is not the best person to evaluate you at this point. You should consult with your RO or medical oncologist. Still, I don’t think any of them would say that you should be on ADT forever.

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I agree you need lots more information and feedback. PC requires a close link between patient and doctors/team.
However, you don't supply much to go on for the more experienced and better educated members of this forum. And I didn't find that you had any other posts on this forum.
Have you read any books on PC? Dr Patrick Walsh's "Surviving Prostrate Cancer"?
Your PSA history?
Aggressiveness of your PC?
Gleason Score?
Are you dealing only with a Urologist or a PC Oncologist/s?
We're all pulling for you but it is always a team effort across the board.
We"ll help you any and every way a group of non-professionals can.
Best of luck and best of care for you!

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My Gleason score was 5-4

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Profile picture for mvc @mvc

I had one shot of Luperon then did 28 days of radiation. I’m due for the 2nd shot now but I’m having second thoughts. Getting a PSA test next week (the first since radiation) to see where I’m at. My urologist doesn’t give me much feedback and just says “stay on the Luperon forever” ??? I guess I don’t understand that if the PC is gone, (if PSA is 0) why keep taking a drug that has so many negative side effects. I already am pre-diabetic and have some low kidney problems and it seems like Luperon will negatively affect these. I’m experiencing some muscle loss and some testicular shrinkage already and wondering if it can be reversed if I stop the Luperon?

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hmm...My urologist doesn’t give me much feedback and just says “stay on the Luperon forever”

Does he say why?

Depending on your clinical data, he may not be "wrong," albeit he may not be right.

Intermittent ADT (IADT) is a possibility in advanced PCa. If so, discuss with your medical team the criteria for going off ADT, how you will monitor for recurrence after and what criteria will result in a decision to go back on.

I am high risk, advanced - GS 8, GG4, 18 months to BCR, rapid PSADT and PSAV, yet the two times I have done ADT, they have been for defined periods, 18 months of Lupron and 12 months of Orgovyx.

The Lupron was planned for 24 months in conjunction with chemotherapy and WPLN radiation. Dr. Kwon agreed to stop at 18 based on my response vice 24. The 2nd time my oncologist wanted to do 24 months of ADT + ARI and SBRT, I wanted do six of ADT, no ARI...we settled on 12 months of Orgovyx and based on my response, would decide then whether to continue in three month intervals until the 24 month point, then come off if the clinical data supported it. Same with the ARI, we decided not add it unless the Orgovyx did not drop the PSA to undetectable within the first three months, it did...

IADT may not be appropriate for all in advance PCa, here's one article, you can find others. Discuss with your medical team. If they say no, ask them for their reasoning and what data supports heir decision based on your clinical history, not the "populationbased data!"

You say "I’m experiencing some muscle loss and some testicular shrinkage already and wondering if it can be reversed if I stop the Luperon? Yes, in part depends on the recovery of T which can and does vary, exercise may help in the recovery as well as the muscle loss, especially resistance training.

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I have not had surgery. I’m 70 years old and have been in pretty good health. Radiation Dr said he thought 18 mo on ADT. I’m having trouble getting any kind of “team” together.

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