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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I am thisisit66, I have had prostate cancer since 2006 and it was getting to the point that I had to do something. I also have Stage V kidney failure and have been on PD dialysis for 4 years. I have been wanting to get a kidney transplant but I had to get the prostate treated. I am 76 years old and until I started the Lupron, considered myself to be in good shape. I had radiation treatment for the prostate then started a regimen of Lupron. First two or three month treatments, then a 6 month treatment - since I had been doing so well. The 6 month treatment KICKED my butt. Took my muscle strength, any stamina that I may have had, and made be exhausted all the time. My PSA had dropped like a rock but the cost has been huge. After a year of treatment, I am thinking about stopping them but I have not consulted my urologist. I feel like a shriveled old man now and I hope I can recover. The ED really has me down and I don't think that is going to recover.

I am wondering how other men have recovered after treatment. This thread has given me some good info but I would like to read how many other men have done.

Thank you, thisisit

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Yes, sadly it is not curable. I now look at as a chronic disease such as diabetes. We have to learn to live with it, treating regularly, and adjusting to its changes as well as our bodies changes. Many parts of this journey are difficult and even painful. For me the emotional struggle has been much worse than the physical struggle, but I have not yet experienced any significant pain from the cancer. I am having increasing joint issues, but they are likely a result of my active and irresponsible youth, along with now being 70, as much or more than the cancer. I am reasonably sure that the drugs (lupron and Cassodex) stripping much of my muscle mass have also contributed to the joint pain. Pilates has helped a lot. I work hard on compartmentalizing the cancer and a good friend gave me the best advice: “its ok to have a bad day and give yourself a pity party, but don’t allow yourself to have two bad days in a row”. So periodically I feel down and I accept it, share with my family that it’s a bad day, and lay low. But the next day I get up out of bed and live. I have found that dealing with it this way has also really stretched out the periods between feeling bad.

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@eldorado80

Started with Lupron Depot injection followed by 20 radiation sessions in 2023. Was administered the maximum 6 month 45mg dosage. Had Gleason score of 8 intermediate high risk. PSA 15. Cancer confined in Prostate with possible microscopic in lymph nodes. Radiation attacked both areas. After treatment early December PSA reading was full remission. However, since taking the LD injection I have been diagnosed with Bradycardia (slow pulse rate) and irregular heart beat so decided to stop the LD injections (4 total over 2 years was plan) in the hope that my heart will return to normal. My radiologist is in agreement that I stop. Most side effects were from injection include hot flashes, libido loss, testicular shrinkage, man boobs and others possibly caused by the injection. Side effect from radiation is incontinence while standing urinating at times. I am hopeful all will go away over the next 6-18 months. I am 80 and feel fine, My best to all posting here.

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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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Started with Lupron Depot injection followed by 20 radiation sessions in 2023. Was administered the maximum 6 month 45mg dosage. Had Gleason score of 8 intermediate high risk. PSA 15. Cancer confined in Prostate with possible microscopic in lymph nodes. Radiation attacked both areas. After treatment early December PSA reading was full remission. However, since taking the LD injection I have been diagnosed with Bradycardia (slow pulse rate) and irregular heart beat so decided to stop the LD injections (4 total over 2 years was plan) in the hope that my heart will return to normal. My radiologist is in agreement that I stop. Most side effects were from injection include hot flashes, libido loss, testicular shrinkage, man boobs and others possibly caused by the injection. Side effect from radiation is incontinence while standing urinating at times. I am hopeful all will go away over the next 6-18 months. I am 80 and feel fine, My best to all posting here.

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@mauinokaoi

I am 76 yrs old. I had a robotic prostatectomy in 2006, and doctor reported prostate was fully encapsulated. In late 2016, I had a biochemical recurrence, and began Lupron and Casodex in Feb 2017. I have been on this treatment continuously since, with one treatment holiday beginning Nov 2021 and lasting for two years, taking only the Casodex. I have had two monthly Lupron injections beginning Nov. A different oncologist suggested Orgovyx rather than Lupron, but I see no benefit since my testosterone is already now low and my psa below 1.0 and dropping still. I have learned to tolerate the side effects as the price to pay for keeping the cancer at bay. The injection is just a nuisance. Can anyone suggest a good reason why Orgovyx is somehow superior to Lupron in terms of their effectiveness?

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Layman opinion: Stay with the devil you know.
I took Orgovyx for 4 mos as part of my salvage radiation w/ ADT tx.
If your side effects (SEs) are manageable for you, I would be inclined to stay the course.
It sounds as if you restarted Lupron in Nov 23.
If you are on holiday again, you could try Orgovyx.
However it may cost you significantly more because it is covered under Part D Medicare as opposed to the coverage for injectables under Part B Medicare.
My Part D coinsurance
cost was 25% or about $ 1000 / mo for Orgovyx until I reached the catastrophic stage ( after 4/5 mos, but I cannot explain the math).
Best wishes for good results.

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@mauinokaoi

I am 76 yrs old. I had a robotic prostatectomy in 2006, and doctor reported prostate was fully encapsulated. In late 2016, I had a biochemical recurrence, and began Lupron and Casodex in Feb 2017. I have been on this treatment continuously since, with one treatment holiday beginning Nov 2021 and lasting for two years, taking only the Casodex. I have had two monthly Lupron injections beginning Nov. A different oncologist suggested Orgovyx rather than Lupron, but I see no benefit since my testosterone is already now low and my psa below 1.0 and dropping still. I have learned to tolerate the side effects as the price to pay for keeping the cancer at bay. The injection is just a nuisance. Can anyone suggest a good reason why Orgovyx is somehow superior to Lupron in terms of their effectiveness?

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mauinokaoi,
I'm replying with the orgovxy site because it shows you a timeline with testosterone supression between the two lupron and orgovyx. Orgovyx provides a more steady dose because you take it everyday. We don't know what the psa does between lab draws, I assume it rises and falls with the testosterone levels.
I know far less than you do about all this. https://www.orgovyxhcp.com/efficacy/

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I don't know anything about it. Check with your Doctor or Her / His NP for risks and benefits of each; and if you have additional health issues is that / are they factors in selecting this medicine over another. God Bless.

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@mauinokaoi

I am 76 yrs old. I had a robotic prostatectomy in 2006, and doctor reported prostate was fully encapsulated. In late 2016, I had a biochemical recurrence, and began Lupron and Casodex in Feb 2017. I have been on this treatment continuously since, with one treatment holiday beginning Nov 2021 and lasting for two years, taking only the Casodex. I have had two monthly Lupron injections beginning Nov. A different oncologist suggested Orgovyx rather than Lupron, but I see no benefit since my testosterone is already now low and my psa below 1.0 and dropping still. I have learned to tolerate the side effects as the price to pay for keeping the cancer at bay. The injection is just a nuisance. Can anyone suggest a good reason why Orgovyx is somehow superior to Lupron in terms of their effectiveness?

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Good question, @mauinokaoi. I wonder if you might get an answer from the guys talking in this discussion:
- What's your experience with Orgovyx (relugolix)?
https://connect.mayoclinic.org/discussion/the-orgovyx-thread/

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My question, do the side effects stay fairly prevalent throughout the 6 months run each time??
Aching joints, endless peeing, lard gut stomach, rough exercising, etc.

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I am 76 yrs old. I had a robotic prostatectomy in 2006, and doctor reported prostate was fully encapsulated. In late 2016, I had a biochemical recurrence, and began Lupron and Casodex in Feb 2017. I have been on this treatment continuously since, with one treatment holiday beginning Nov 2021 and lasting for two years, taking only the Casodex. I have had two monthly Lupron injections beginning Nov. A different oncologist suggested Orgovyx rather than Lupron, but I see no benefit since my testosterone is already now low and my psa below 1.0 and dropping still. I have learned to tolerate the side effects as the price to pay for keeping the cancer at bay. The injection is just a nuisance. Can anyone suggest a good reason why Orgovyx is somehow superior to Lupron in terms of their effectiveness?

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