Resolution of Side Effects after Stopping ADT/Lupron

Posted by retireddoc @retireddoc, Jan 21 5:50am

Hello everyone. I am 70 years old and was diagnosed with PC about 2 and a half years ago, G9 with extra capsular extension but node negative on RP !0/21. Rising PSA post op with PSMA PET revealed solitary met T8 treated with SBRT. Again, rising PSA (rapid doubling time) with repeat PET revealed positive LN in pelvis. Sought systemic treatment at Johns Hopkins. Immediately started on ADT (3 month Lupron), Darolutamide and chemo with Taxotere. After second chemo treatment my PSA was undetectable and has thankfully remained so. My MO kept me on Lupron for one year so my last 3 month injection was July 2023.

I have experienced significant fatigue, hot flashes, loss of body hair (partly due to chem but hair head grew back, loss of libido, muscle loss and joint stiffness/soreness, depression and poor concentration and genital shrinkage as a the result of the Lupron. Pretty much the full monty.

My question to those that were on ADT and then taken off: how long before the symptoms improve or completely go away? I know it is dependent on return of testosterone and that is variable. My testosterone was in the 500s pre Lupron and my last blood draw (Dec 5, 2023-2 months after the 3 month Lupron should "quit working") my Testosterone was < 3. Fortunately the hot flashes are abating.

I read in the literature that it can take a year or more but is dependent on multiple factors. I have found the real life experience of those on this forum to be more helpful to me for questions like this.
Any help with specifics regarding the above side effects would be greatly appreciated.

Good luck to everyone on this journey!

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

edmond1971 | @edmond1971 | Jan 21 7:36am

Great question. I asked my MO last month and he said that when I get off of ADT (it will have been 2 years and I will be 53 at that time) that there is a "high probability that I will have a modest recovery of testosterone in the 6-15 month range". I am sure there will be others to chime in. While the sexual function is certainly desirable, selfishly I just want the brain fog to go away.

hbp | @hbp | Jan 21 9:10am

I was taken off of ADT and Erleada 14 months ago. My PSA is still undetectable and my T was 125 two months ago but it has recently dropped to under 100. I am ok with low T, ( ED, muscle loss, no hot flashes) . T is food for the cancer and as little food as possible is ok with me. I hoping for and doing all that I can for a long run with this damn cancer.

mike72 | @mike72 | Jan 22 7:26am

This is a great description of what I have been treated for…i was 71 at the time…diagnosed
With 3+4=7 PC and with minor extra capsular extension…I had radiation and was on Lupron for 2 years and Casadex…psa still remains undetectable .
To your question…I still experience hot flashes after 6 month holiday from Lupron.
I fight through the fatigue with weight training and exercise…I also find exercise to be a great stress reducer…currently 73 and living each day👍
Thanks for sharing…

kujhawk1978 | @kujhawk1978 | Jan 23 7:49am

Here's my clinical history, emphasis on "my."

I did 18 months of ADT starting January 2017, last 90 day shot was in May 2018. By October, T was 135 and by February 2019, 400+

As you might expect, the last shot "expired" by the end of July, by September I noticed the SES fading - fatigue, hot flashes, muscle and joint stiffness.

Why did my T recover so "fast" and to a higher level than when I started in January 2017? I don't know...I have read some literature about he role exercise plays in T recovery, I'm pretty active, maybe?

It will be interesting to see what it does after April when I finish my one year of Orgovyx in conjunction with SBRT.

Kevin

ronc320403 | @ronc320403 | Jan 27 10:22am

Good question to begin this conversation and very informative replies. Thanks!
I just started Lupron 5 days ago with a 3 months shot. The replies give me a very realistic idea of what to expect. While nothing to look forward to, just knowing relieves much of the anxiety that has built up. Again, thanks folks, I know I can deal with it.

florida11 | @florida11 | Jan 28 10:40am

I was on ADT for two years and I don't think my T started going up for 4-5 months after the 3M period scheduled to be covered by my last shot, and probably peaked around 9 months. I was 54 at the time. Good luck!

retireddoc | @retireddoc | Jan 28 2:52pm

Thanks!

Colleen Young, Connect Director | @colleenyoung | Jan 31 7:58pm

Hi @retireddoc, you may also be interested in these similar discussions.

- How long do the side effects of Lupron/Eligard last?
https://connect.mayoclinic.org/discussion/how-long-do-the-side-effects-of-luproneligard-last/
- Length of Lupron effects after treatment concludes
https://connect.mayoclinic.org/discussion/length-of-lupton-effects-after-treatment-concludes/
- list of 10+ years metastatic prostate survivor on lupron
https://connect.mayoclinic.org/discussion/list-of-10-years-metastatic-prostate-survivor-on-lupron/
What helps you mitigate or alleviate and cope with the side effects?

retireddoc | @retireddoc | Feb 1 5:33am

Thanks for the links.

I have continued to exercise (walk and golf) and recently started back to the gym. That helps some. Also, the frequent afternoon nap and trying to get plenty of sleep at night. Not not much to do about the mental fog, hot flashes and other side effects. I am hopeful that my body and mind return to pre Lupron state with return of testosterone. Double edged sword; continued concern for rising PSA as testosterone returns.

ikep | @ikep | Jul 25 9:44am

I AM 85 WITH 2.5 YEARS OF ADT. Have had all the same side effects while on ADT and am now 3 months post treatment. PSA >0.01 fo r now.

Had a brief respite from symptoms (couple of weeks) immediately upon stopping but most have resumed - hot flashes, pain in joint and muscles, more charley horses and shin splints, brain fog, fatigue, etc,

Was hoping to resume sex, 12 hr work days, and an interest in daily life. Literature says very unlikely, but hoping.

Thanks to all of you who are longer past treatment who shared success and still waiting.

Will post again next year.