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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@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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Sorry, for confusing you Caregiver, English is only my first language for nearly 70 years and I still haven't mastered it!
My original PSA at discovery was 20.0. After 25 EBRT, HIR and 2-1/4 years of Lupron shots ( 1 @ 3 month intervals) current PSA is 0.03. Temporary halt to the injections of the Lupron based upon my joint and muscle pain and fatigue. I'll start it up again by November of 2024 at the latest, hopefully to again be able to endure the shots and their side effects for 2-1/4 additional years and then cycle off and on for hopefully beyond life expectancy. My Team of Doctors have said there really is no peer-reviewed studies for my particular case- I'm an outlier.
My 12 biopsy samples were 4+3's and 4+4's in 5 of the 6 cross-sections so I'm a high 7, low 8 Gleason score, High Risk PC. My second opinion Doctor , based upon his many years of experience suspected that at least some prostate cancer cells have transported themselves and are "seeded"; figuring that I have had PC for at least 13 years before my diagnosis. He shared a longetudinal study of men older than me and their treatments. This study, and I apologize I don't remember its title, year or any of the researchers names, suggested that those individuals who had EBRT, HIR and ADT (forever) had a 3% All-Cause Mortality after 8 years vs. other protocols that had higher ACM, one at nearly a 30% ACM! I noted that surgery and Lupron for only 2 years had an ACM rise dramatically after an additional 2-3 years of being off the ADT. This is why, in my mind, I am trying to "thread the needle" between QOL and PC cell mutation into Agressive ADT resistive cells that will really "get me" in both categories. I hope that 18 months off isn't enough time to "awaken" the cancer cells so they start to produce their own testesterone or grow on their own regardless of T-Levels. Thank you for your concern and your work, I appreciate your efforts! If you know of any studies I could read or better yet any on-line journals we survivors can access please post it in this string. God Bless,

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@weakbutstrong

Hey Pwitkin!
Have a Happy 70th Birthday! and make sure to keep posting so we can all CeleBrate Your 80th!!!!!!!! Keep on Going Brothers!
I had 25 EBRT, HIR and 2-1/4 years of Lupron Shots. I temporarily stopped the shots May '23; I am planning to start Lupron again after an 18 month break (tentatively; based upon PSA rise{has stayed at 0.03 down from 20.0}) in an attempt to "thread the needle" of recovering from the side effects of the Lupron and Bull-Fighting with the seeded prostate cancer cells to try to keep them "asleep" and not be stimulated into mutating into the most aggressive prostate cancer cell by using the Lupron for 2-1/4 years and 18 months break cycles, hopefully into my 100's. (Why not stay optimistic!?!)
I know I may be very foolish by having a break from the Lupron rather than just keep it flowing every three months.
A question for the Moderator of this posting site: Is there a central web address for all of the clinical trials in the U.S. related to PC and its metasis?

Jbuuck! Lupron has totally removed the gift of the Marriage Embrace, as well as my former great muscular strength, muscular endurance, and aerobic capacity- I no longer jog marathons which diminished to walking 20 miles, which is now walking 6 miles at 2.75 - 3.0 mph, max. Muscle and joint pain is still present but has not been as delapitating where it had started to interfer with social interactions, not wanting or having the energy to talk or play cards, concentrate on conversations because of energy and focus on trying not to be in pain. From 230 lbs now 263 lbs (and I'm not a prospect as an NFL Linebacker!), brain fog still present (but I have stopped and asked for directions when driving!) Life has changed, but is still a magnificent and marvelous Gift from Our Creator. So I hope all of us who have been diminished in our physical sevice to others will still help others by praying for others and our world. God Bless you all and yours.

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Thank you sharing🤗 I am a caregiver: just to make sure I understood
your PSA levels started going up and that is why you are taking a break as well as due to side effects from Lupron? Wonderful optimistic attitude take care and God bless you many more years of life.

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Hey Pwitkin!
Have a Happy 70th Birthday! and make sure to keep posting so we can all CeleBrate Your 80th!!!!!!!! Keep on Going Brothers!
I had 25 EBRT, HIR and 2-1/4 years of Lupron Shots. I temporarily stopped the shots May '23; I am planning to start Lupron again after an 18 month break (tentatively; based upon PSA rise{has stayed at 0.03 down from 20.0}) in an attempt to "thread the needle" of recovering from the side effects of the Lupron and Bull-Fighting with the seeded prostate cancer cells to try to keep them "asleep" and not be stimulated into mutating into the most aggressive prostate cancer cell by using the Lupron for 2-1/4 years and 18 months break cycles, hopefully into my 100's. (Why not stay optimistic!?!)
I know I may be very foolish by having a break from the Lupron rather than just keep it flowing every three months.
A question for the Moderator of this posting site: Is there a central web address for all of the clinical trials in the U.S. related to PC and its metasis?

Jbuuck! Lupron has totally removed the gift of the Marriage Embrace, as well as my former great muscular strength, muscular endurance, and aerobic capacity- I no longer jog marathons which diminished to walking 20 miles, which is now walking 6 miles at 2.75 - 3.0 mph, max. Muscle and joint pain is still present but has not been as delapitating where it had started to interfer with social interactions, not wanting or having the energy to talk or play cards, concentrate on conversations because of energy and focus on trying not to be in pain. From 230 lbs now 263 lbs (and I'm not a prospect as an NFL Linebacker!), brain fog still present (but I have stopped and asked for directions when driving!) Life has changed, but is still a magnificent and marvelous Gift from Our Creator. So I hope all of us who have been diminished in our physical sevice to others will still help others by praying for others and our world. God Bless you all and yours.

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@pwitkin

I was first diagnosed and had surgery in 2015. We thought we got it all, but a year later my PSA rose and I underwent a similar protocol as you, ( Lupron, radiation, 2 years of casodex) in 2016-17. In 2018 my cancer returned ( PSA increasing) several times and I was able to successfully supress it with Intermittent treatments of Lupron and casodex treatment for three months. The first time my PSA dropped for 14 months, then started to rise and we treated again. The second and third times i got 9 months and then 6 months of supression. Now my PSA has again risen and my cancer has been diagnosed as CRT ( castration resistant cancer) and I am moving from intermittent treatment to continuous treatment of Lupron every three months. My side effects are minimal, with some tiredness and hot flashes mostly in the middle of the night, but certainly tolerable. We are now looking at some new drugs and a possible trial. However, when first diagnosed they thought I might live 2-3 years without surgery. I am now entering my 10th year, and with the new drugs available, we are relatively hopeful for another 5+, or maybe even 10. I will be 70 in three weeks, so this is actually more than I had expected, and grateful for every day. No question that this cancer is complicated and at times a bit debilitating, but there is certainly a life worth living with it as well.

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I anticipate that I will experience a reoccurring cancer of prostate in the future . It makes sense that you would go back on Lupron and/or Casadex until it stops working… continue the science experiment until it is time to try something else.
More drugs are coming onto the market… I am watching closely to see how others like us are being treated going forward..

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@mike72

I came off of Lupron and Casadex 2 months ago after 2years.. had radiation 2years ago.
I continue to experience some fatigue and hot flashes during the night.
Psa readings are undetectable.. stay active with exercise to fight through the fatigue…not fun BUT better than advanced prostate cancer

Jump to this post

I was first diagnosed and had surgery in 2015. We thought we got it all, but a year later my PSA rose and I underwent a similar protocol as you, ( Lupron, radiation, 2 years of casodex) in 2016-17. In 2018 my cancer returned ( PSA increasing) several times and I was able to successfully supress it with Intermittent treatments of Lupron and casodex treatment for three months. The first time my PSA dropped for 14 months, then started to rise and we treated again. The second and third times i got 9 months and then 6 months of supression. Now my PSA has again risen and my cancer has been diagnosed as CRT ( castration resistant cancer) and I am moving from intermittent treatment to continuous treatment of Lupron every three months. My side effects are minimal, with some tiredness and hot flashes mostly in the middle of the night, but certainly tolerable. We are now looking at some new drugs and a possible trial. However, when first diagnosed they thought I might live 2-3 years without surgery. I am now entering my 10th year, and with the new drugs available, we are relatively hopeful for another 5+, or maybe even 10. I will be 70 in three weeks, so this is actually more than I had expected, and grateful for every day. No question that this cancer is complicated and at times a bit debilitating, but there is certainly a life worth living with it as well.

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@mike72

I came off of Lupron and Casadex 2 months ago after 2years.. had radiation 2years ago.
I continue to experience some fatigue and hot flashes during the night.
Psa readings are undetectable.. stay active with exercise to fight through the fatigue…not fun BUT better than advanced prostate cancer

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Agreed on exercise. I had LOW energy coming out of the spring. The guidance was "exercise to get more energy", which was paradoxical since I had no energy to exercise. However, I pushed through it with daily swimming then weight-bearing a few months ago and it really helped. I also had 5 weeks of radiation back in January/February- that was rough at the end, but did a lot of work: diet, qigong, meditation, reiki, exercise and felt much better. I'm feeling better this morning actually from discussing this all.

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@menardeast

I just came off ADT (Lupron & Abiraterone) a week ago after 18 months. I'm not sure what, if anything, I was expecting right away, but my fatigue, anxiety, and depression kicked up this week. After reading the other comments, it appears the side effects of no-T and Lupron are still clear and present. I will say, though, that while my hot flashes during treatment were minor and infrequent, they have really kicked up this past week-I'm more hot than ever and its winter in NY. Something kicked in my depression also, which came about related to cancer, radiation, and ADT- I had never felt it before being diagnosed and treated, or at least on this level. I had been feeling great for awhile (KAT), but things went sideways this week, a noticeable change in energy and drive. Will be #patient. Stay positive guys.

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I came off of Lupron and Casadex 2 months ago after 2years.. had radiation 2years ago.
I continue to experience some fatigue and hot flashes during the night.
Psa readings are undetectable.. stay active with exercise to fight through the fatigue…not fun BUT better than advanced prostate cancer

REPLY
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