question for those who have stopped L... - Advanced Prostate...

Advanced Prostate Cancer

21,043 members26,249 posts

question for those who have stopped Lupron after many years of ADT

Chugach profile image
25 Replies

I have been on Lupron for 8 years with the short-term exception of a high/T clinical trial,( but even during the trial I stayed on Lupron). Anyway I’m undetectable and decided to stop Lupron.

3 months after not getting my shot my T is now a whopping 37.

I am curious to hear from some of you who have stopped Lupron after being on it long-term. I am curious as to any ‘side effects’. I’m experiencing some issues- but I don’t want to influence your comments.

Let me know.

Written by
Chugach profile image
Chugach
To view profiles and participate in discussions please or .
Read more about...
25 Replies
6357axbz profile image
6357axbz

I’ve read here that long term ADT destroys one’s body’s ability to produce much T. It’s been true Fl or me.

janebob99 profile image
janebob99 in reply to 6357axbz

How long were you on ADT?

6357axbz profile image
6357axbz in reply to janebob99

6 years minus about 22 months (2 different medication holidays)

janebob99 profile image
janebob99 in reply to 6357axbz

According to the data, your T-recovery may be very long..many years at least.

Have you considered doing T supplementation? Many papers by A. Morgentaler at Harvard Medical School report that this is a safe and effective treatment for men in your situation.

6357axbz profile image
6357axbz in reply to janebob99

I have not considered it yet as I’m not suffering from low T symptoms

janebob99 profile image
janebob99 in reply to 6357axbz

Great! What is your T level now?

Some side effects of Low-T are not visible, such as osteoporosis / osteopenia, lipid changes, blood pressure, cholesterol, glucose changes, to name a few. Have you checked all of these lately?

6357axbz profile image
6357axbz in reply to janebob99

<3

I have checked them all earlier this month. No major red flags

janebob99 profile image
janebob99 in reply to 6357axbz

Excellent. You're in good shape.

What's your T-level now?

6357axbz profile image
6357axbz in reply to janebob99

<3

janebob99 profile image
janebob99 in reply to 6357axbz

Sorry...I thought "<3" was an emoji. Ha !

Ramp7 profile image
Ramp7

Been on Lupron for over 3.5 years. Have skipped the last 3 month shot and am monitoring while on BAT. After 3 months very low T levels were in place. My MO said it could take several months to witness recovery. If I notice my T not going down during the low T phase of BAT, I shall administer Orogovyx daily.

janebob99 profile image
janebob99 in reply to Ramp7

Here's a plot showing the average % T-recovery versus time for different durations of ADT. For an ADT duration = 3.5 years, the average time for men to recover 50% of their baseline testosterone is 70+ months...not "several months".

That's good that you're doing BAT therapy. Keep us posted on your progress.

Bob

T-Recovery vs time
dhccpa profile image
dhccpa

I wish I was asking that question myself!

SteveTheJ profile image
SteveTheJ

I paused Lupron after about 4 years (6 months so far). No side effects from stopping; my testosterone went from 7 to 67 and I feel mildly better in terms of the fatigue. Nothing dramatic but I'm grateful.

Yzinger profile image
Yzinger

is the OP gleason 9 or meta?

treedown profile image
treedown

I stopped it after 2 so not sure that falls into your definition. All I daw was the reversal of the side effects and nothing I could cj sider a new side effect. I hope you find what your looking for. Glad your doing so well that your able to stop.

Lewellen profile image
Lewellen

After a year and a half on lupron my PSA continued to be undetectable. I decided that if at 2 years it was still undetectable, I would take an ADT vacation. In preparation for the vacation I switched to orgovyx because testosterone recovery is quicker from orgaovyx than lupron.

Once I was off ADT, testosterone rose to 100 within 2 months. Then to 180 at 3 months. (200 is the minimum normal)

From what I understand, had I continued on lupron my testosterone might not have risen significantly for 6 months or longer.

I have no idea of what 8 years of lupron might do to potential testosterone production.

The only other tidbit of information I have is that I did ask my MO if after 2 years of ADT would my testicles even be able to go back into production. He said yes, so that's what I'm working with 🤷

CANAMA profile image
CANAMA

On Lupron for about 2.5 years. I have been off Lupron for about 4.75 years. Since then T recovery high water mark was 97 about 2 years ago and on March 12, 2024 T was 75.

janebob99 profile image
janebob99 in reply to CANAMA

You should have recovered your baseline T by this time. What was your original baseline before Lupron, and how old are you?

You should consider doing T supplementation. Many papers by A. Morgentaler at Harvard Medical School support doing this.

CANAMA profile image
CANAMA in reply to janebob99

Thanks for your reply Bob. Unfortunately I did not have T tested prior to my diagnosis in December 2016. God willing I will be 75 years old in August 2024. I have been too timid to supplement my T to date. I plan to discuss the subject with my MSK MO this October.

janebob99 profile image
janebob99 in reply to CANAMA

I would suggest asking your PCP or GP about T-supplementation. Shouldn't have to wait until October to feel better.

Ask your MO for evidence that supplementing T for your condition is bad.

I'll bet that he doesn't have any evidence.

janebob99 profile image
janebob99

Here's a plot showing the average % T-recovery versus time for different durations of ADT. For an ADT duration = 3.5 years, the average time for men to recover 50% of their baseline testosterone is 70+ months...not "several months". I have no idea about T-recovery when the ADT duration is so long...8 years.

Have you considering doing T supplementation? It's been reported as a safe and effective treatment in your situation (see papers by A. Morgentaler at Harvard Medical School).

Bob

CANAMA profile image
CANAMA in reply to janebob99

My ADT duration was about 29 months and expired in June 2019

janebob99 profile image
janebob99 in reply to CANAMA

Here's a graph of data showing how long it takes for men (on average) to recover 50% of their baseline T. For an ADT duration of 29 months, it should take about 50 months to recover 50% of your baseline.

T-recovery
CANAMA profile image
CANAMA in reply to janebob99

Thanks very much.

You may also like...

How many 3-months injections of lupron for 2-year-long ADT

total of 24 months coverage. Currently my PSA is undetectable. What would you do?

When to stop taking calcium after stopping Lupron?

when it was OK to stop taking calcium supplements after stopping Lupron? I have no issues with...

Question on stopping ADT - Keytruda/pembro

again. I’m 51 now, diagnosed at 46 - ADT for the entire time, except for a high-T clinical trial....

DepoProvera for Lupron SEs--many questions

deprivation and other side-effects of Lupron/Zytiga. So far, I've had 3 shots, roughly a month...

Emotional instability after stopping lupron and abiraterone

says his short term memory is also getting worse again, as it was when he was on the lupron. He has