How long do symptoms last after completing ADT?

Posted by chris135711 @chris135711, Nov 6 9:00am

I've completed radiation and 18 of 24 months of planned ADT (abiraterone + leupron) for high-risk but localized PC. My major side effects are fatigue, decreased muscle mass, increased abdominal fat and (of course) loss of libido. My question is, how long does it take for the side effects of ADT to resolve after stopping the medications? Thank you - I look forward to hearing about your experiences.

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Profile picture for ecurb @ecurb

@stew80 spot on, 11 months after ADT, Testosterone is only 59 after 28 months of ADT.

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I’m 6 months post last Lupron shot , testosterone now 115 , but despite my large appetite for sex prior to surgery, I have little desire to now due to the past year of trying everything for a good erection with poor to no results. Never thought I could ever lose interest, hope it comes back, my Johnson tired of injections

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Profile picture for graybeard46 @graybeard46

I’m 6 months post last Lupron shot , testosterone now 115 , but despite my large appetite for sex prior to surgery, I have little desire to now due to the past year of trying everything for a good erection with poor to no results. Never thought I could ever lose interest, hope it comes back, my Johnson tired of injections

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@graybeard46 There’s a 2023 presentation out of Stanford University that might provide some ideas. At least it’s something to discuss with your medical team —> it’s titled “Penile Rehab: Optimizing Recovery of Erectile Function after Prostate Cancer Treatment” —> https://youtu.be/aRp1NXjPGLE

(They first talk about how things are supposed to work “down there,” what goes wrong as a result of treatments, and then a variety of remedies.)

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At the point where I began having balance issues—about one year into ADT—I got myself a pair of telescoping walking sticks. I couldn’t go as fast or as far as I wanted to, but I could enjoy the outdoors with confidence. I got a decent pair from a sporting goods store for about $40. Well worth the investment. I’ve continued using them since stopping ADT a year ago, and they’ve definitely helped kickstart my recovery.

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I am 54. I was on Eligard (and Zytiga) for 24 months and upon stopping my testosterone very slowly came back in the first three months, more in the 3-6 months range and by month 8 it was over 300 and now in month 13 it is at 500. Most of my side effects slowed down within the first few months and were non-existent by month 6. Muscle mass improvements have been most noticeable in the last few months. Sexual function started around month 6 and now is back to normal, but in all fairness, normal is all relative. I occasionally get raging erections in the early morning with no sexual stimulation, almost reminds me of being a teenager, ha!

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Profile picture for brianjarvis @brianjarvis

@graybeard46 There’s a 2023 presentation out of Stanford University that might provide some ideas. At least it’s something to discuss with your medical team —> it’s titled “Penile Rehab: Optimizing Recovery of Erectile Function after Prostate Cancer Treatment” —> https://youtu.be/aRp1NXjPGLE

(They first talk about how things are supposed to work “down there,” what goes wrong as a result of treatments, and then a variety of remedies.)

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@brianjarvis thanks I’ll check it out

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Profile picture for brianjarvis @brianjarvis

@graybeard46 There’s a 2023 presentation out of Stanford University that might provide some ideas. At least it’s something to discuss with your medical team —> it’s titled “Penile Rehab: Optimizing Recovery of Erectile Function after Prostate Cancer Treatment” —> https://youtu.be/aRp1NXjPGLE

(They first talk about how things are supposed to work “down there,” what goes wrong as a result of treatments, and then a variety of remedies.)

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@brianjarvis good try but I have seen this before, I’ve seen a dozen similar videos , none have the magic bullet yet

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Profile picture for jimbo12 @jimbo12

1. I am an outlier.
2. I stopped Lupron THREE years ago (after only two shots, three months apart).
3. But I STILL have NOT regained my previous level of mobility.
4. I am now 88 years old.

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@jimbo12 I’m only (lol) 76, in the same boat. It’s hard to tell what is caused by medication and what is a result of aging.

I’ve read recovery time differs depending in tne specific ADT used. For instance, Orgovyx is faster than Lupron and other similar injectables.

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Following a RP, I was on lupron and abiraterone for 2 years and 39 EBRT treatments. Prior to ADT treatment beginning at age 68, my T was in the higher end of the normal range. Prior to surgery, I was quite active and otherwise healthy. 6 months after ending ADT, my T was back in the normal range and has remained there. Within a couple of months of ending treatment, I started feeling better—more strength and stamina, although I did still tire easily, slept a long time, and had to take naps several days a week. I am now one year out from ending ADT and feel much better, and although I still get more tired than I did pretreatment, I continue to do better and better. Brain fog and emotional resilience are also improving.

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Profile picture for jimbo12 @jimbo12

@ava11My last test in September put it at 257. Three years ago, I could walk 4 miles confidently (and even with some cockiness) to do various errands around town. I have lost all confidence. Of course, I am grateful that I can still walk around the house with sufficient confidence to do my chores. But I am too terrified to attempt walking outside on the sidewalk. Thank you for your note, and have a nice weekend.

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@jimbo12
You are 2 years younger than me. You were diagnosed with PC at age 85 and I was diagnosed at 88. We are lucky that we were cancer free into old age. But it is also extra challenging to deal with age related issues and PC treatment side effects at the same time.
MY Testosterone level was 328 before treatment (March,2024). I stopped ADT after 12 months. Now my T is 87, 7 months after stopping ADT.

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Profile picture for ava11 @ava11

@jimbo12
What is Your Testosterone level now, if you don't mind sharing? When you say not gained previous level of mobility means you can't walk at same pace as before or duration?

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@ava11 I do not have the confidence to walk on the sidewalk.

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