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.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

I was diagnosed in 2015. However, I stumbled across a 2010 occupational physical PSA result of 0.64. I know, most of you are laughing right now. Unfortunately, with my cancer this is a significant number. Over the past 10 years, my highest PSA has been 4.2 with the majority of my results below 1. Looking back, I realized that I started having ED symptoms in 2011.

I have had prostatectomy, radiation of the prostate bed, two sessions of chemotherapy, tumor ablations, Pluvicto treatment, Xtandi treatment, and currently on Vitrakvi. All of this time I have been on ADT.

I post this with two intentions. First, please take your PSA results as an indication of PCA activity and have your doctor explain it until you understand it. Second, have faith that you can beat this beast! Family, friends, and a medical team you believe in are extremely important. In my case, PRAYER has been very important to me. I pray you find strength to persevere.

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"It’s all just really complicated.."

Yes, good news, yet, it means there is a plethora of choices. It can lead to "paralysis by analysis."

Do your homework, have discussions with your medical team, when they "recommend" a treatment, they need to explain why they chose that over other options given your clinical data.

Rules for me...

Don’t Walk In Cold to an Appointment. To make sure I do the best thing for my individual prostate cancer, I need to educate myself.

Knowledge will empower my BS detector. When my medical team told me ADT is what I need and did not want to talk about imaging and combining other therapies such as radiation and chemotherapy, I didn’t just have to accept their advice on faith.

I walk in the door ready to start the conversation at a different level. I don’t have to spend time talking about the basics, things like Gleason grade and clinical stage and what they mean. I already know. I can have an intelligent discussion about the merits of a particularly treatment for my cancer, my likelihood of being cured, and risk of side effects.

Kevin

Shared files

New Prostate Cancer Treatments Offer Hope for Advanced Cases (New-Prostate-Cancer-Treatments-Offer-Hope-for-Advanced-Cases.pdf)

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@kujhawk1978

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 really appreciate the feedback. It’s all just really complicated. I’ll get my first PSA test (post Radiation) soon so hopefully that will tell me more. I always thought that after radiation I could get another “test” and determine if it was all gone then go about my merry way .. just realizing it’s not that simple.

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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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@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?

Jump to this post

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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My Gleason score was 5-4

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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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@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?

Jump to this post

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 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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@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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