1. < Prostate Cancer

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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 2 2:26pm
In reply to @ikep "I AM 85 WITH 2.5 YEARS OF ADT. Have had all the same side effects while..." + (show)
@ikep

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.

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@ikep, I can understand your wish to regain interest in daily life and sex, not sure about getting back to 12-hour work days. We mourn things that are taken from us, of course. I hope the symptoms improve with time, like they have for some.

Do you find exercise or physical activity helps?

REPLY
1 reply
griff1492 | @griff1492 | Aug 4 9:47pm

I’ve had the same experience as retireddoc. Two years on Lupron/Eligard (3 month shots) along with Zytiga (Abiraterone) and Prednisone. My last shot was early April and I thought by July I’d be feeling good. Just the opposite I’ve been sore, fatigued, muscle and joint aches, weakness in hands and feet. My family doc thought it was prednisone withdrawal and put me on a very gradual tapering regimen starting back at 10mg daily. That resolved the problems until I got down to 3mg and all the aches and pains returned This is miserable but I guess I’ve got to tough it out until my body starts making testosterone and cortisol

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1 reply
frankl | @frankl | Aug 6 1:07pm

I cannot get a straight answer to this same question. Even the pharm company who makes Eligard cannot answer this question, which is really disturbing

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kujhawk1978 | @kujhawk1978 | Aug 7 8:12am

Just an update, had my 90 day labs (8 July) and consult (10 July) after coming off 12 months of Orgovyx (3 April).

PSA .01
T 328

So for me, as "advertised," a "fast" recovery of T. It will be interesting to see what the results are in October. Meanwhile, muscle and joint stiffness gone as is the fatigue, hot flashes mainly abated, as has the geintalia shrinkage.

Kevin
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2 replies
ecurb | @ecurb | Aug 7 8:42am
In reply to @griff1492 "I’ve had the same experience as retireddoc. Two years on Lupron/Eligard (3 month shots) along with..." + (show)
@griff1492

I’ve had the same experience as retireddoc. Two years on Lupron/Eligard (3 month shots) along with Zytiga (Abiraterone) and Prednisone. My last shot was early April and I thought by July I’d be feeling good. Just the opposite I’ve been sore, fatigued, muscle and joint aches, weakness in hands and feet. My family doc thought it was prednisone withdrawal and put me on a very gradual tapering regimen starting back at 10mg daily. That resolved the problems until I got down to 3mg and all the aches and pains returned This is miserable but I guess I’ve got to tough it out until my body starts making testosterone and cortisol

Jump to this post

FYI- I m only on 5 mg. Prednisone with my Zytiga.

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retireddoc | @retireddoc | Aug 7 3:07pm
In reply to @kujhawk1978 "Just an update, had my 90 day labs (8 July) and consult (10 July) after coming..." + (show)
@kujhawk1978

Just an update, had my 90 day labs (8 July) and consult (10 July) after coming off 12 months of Orgovyx (3 April).

PSA .01
T 328

So for me, as "advertised," a "fast" recovery of T. It will be interesting to see what the results are in October. Meanwhile, muscle and joint stiffness gone as is the fatigue, hot flashes mainly abated, as has the geintalia shrinkage.

Kevin

Jump to this post

Fantastic news on the PSA, T and SE recovery!

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solidwater | @solidwater | Sep 4 9:10pm
In reply to @colleenyoung "@ikep, I can understand your wish to regain interest in daily life and sex, not sure..." + (show)
@colleenyoung

@ikep, I can understand your wish to regain interest in daily life and sex, not sure about getting back to 12-hour work days. We mourn things that are taken from us, of course. I hope the symptoms improve with time, like they have for some.

Do you find exercise or physical activity helps?

Jump to this post

hi I( have been recently active in this group it was about 5 months ago there was a discussion re lupron and the length of time radiation treatments linger. my id here is ' solidwater ' i wonder if there is any way for me to recover the information it was useful and included several Doctors including one Canadian

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2 replies
retireddoc | @retireddoc | Sep 5 7:51am
In reply to @kujhawk1978 "Just an update, had my 90 day labs (8 July) and consult (10 July) after coming..." + (show)
@kujhawk1978

Just an update, had my 90 day labs (8 July) and consult (10 July) after coming off 12 months of Orgovyx (3 April).

PSA .01
T 328

So for me, as "advertised," a "fast" recovery of T. It will be interesting to see what the results are in October. Meanwhile, muscle and joint stiffness gone as is the fatigue, hot flashes mainly abated, as has the geintalia shrinkage.

Kevin

Jump to this post

Kevin, enjoy your posts and obviously wish you the best. I have posted multiple times before but recap: 71 with G9 oligo, T8 solitary met on PSMA PET 4/22 treated with SBRT, rising PSA in 9/22 with repeat PSMA PET revealing +pelvic node but no T8 activity, triple therapy (Lupron, Darolutamide and Taxotere) at Hopkins completed 12/22. pelvic radiation 4/23 with 37 treatments, PSA undetectable since mid triple therapy (11/22), off Lupron with last 3 month injection 7/22/23. On no meds. My T pre treatment was around 450.

The SEs of the ADT have been difficult to handle- depression (on antidepressants), fatigue, joint/muscle stiffness, hot flashes (almost gone) and, to add insult to injury, genitalia shrinkage. My last T in June was 30. The docs at Hopkins say most men either start to recover or recover their T about 9-12 months after the ADT has worn off. I'm still hopeful but it has been difficult.

Your story is encouraging. Thanks for sharing.

REPLY
1 reply
budisnothome | @budisnothome | Sep 6 7:32am
In reply to @solidwater "hi I( have been recently active in this group it was about 5 months ago there..." + (show)
@solidwater

hi I( have been recently active in this group it was about 5 months ago there was a discussion re lupron and the length of time radiation treatments linger. my id here is ' solidwater ' i wonder if there is any way for me to recover the information it was useful and included several Doctors including one Canadian

Jump to this post

If you search lupron lots of discussions come up.

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ecurb | @ecurb | Sep 6 9:11am
In reply to @retireddoc "Kevin, enjoy your posts and obviously wish you the best. I have posted multiple times before..." + (show)
@retireddoc

Kevin, enjoy your posts and obviously wish you the best. I have posted multiple times before but recap: 71 with G9 oligo, T8 solitary met on PSMA PET 4/22 treated with SBRT, rising PSA in 9/22 with repeat PSMA PET revealing +pelvic node but no T8 activity, triple therapy (Lupron, Darolutamide and Taxotere) at Hopkins completed 12/22. pelvic radiation 4/23 with 37 treatments, PSA undetectable since mid triple therapy (11/22), off Lupron with last 3 month injection 7/22/23. On no meds. My T pre treatment was around 450.

The SEs of the ADT have been difficult to handle- depression (on antidepressants), fatigue, joint/muscle stiffness, hot flashes (almost gone) and, to add insult to injury, genitalia shrinkage. My last T in June was 30. The docs at Hopkins say most men either start to recover or recover their T about 9-12 months after the ADT has worn off. I'm still hopeful but it has been difficult.

Your story is encouraging. Thanks for sharing.

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The more important question is , when ADT side effects go away, will a rise in PSA occur soon? Let’s sing the song by Kenny Rodgers, The Gambler. Lol

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