Will T return?: As I near the end of my... - Advanced Prostate...

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Will T return?

jmarsh profile image
31 Replies

As I near the end of my 2 years of ADT (Lupron + Abi), I am curious if I should expect a return of Testosterone. I would love to regain my libido and endurance. But after 2 years, I don't know what to expect. My MO has been pretty vague about what to expect. Another issue is that I didn't have a baseline number prior to treatment. I know that libido was strong and stamina was good.

Anyone have experience on what to expect?

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jmarsh
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31 Replies
Mike1971 profile image
Mike1971

I was on ADT for two years. Got my last lupron shot in january 2023 but continued with daily abiraterone. In July 2023 my testo was still almost null. Quit abiraterone in July 2023, and a few weeks later my testo was back to pretty much normal.

As far as I know, this is very individual. Some never get their testo back.

To help your testosterone production you should work out, eat well and get good sleep (which is easy to say).

Nusch profile image
Nusch

We‘ll walk together, also stopping Lupron this month and curious about my testo recovery. Let’s see. Literature says, it’s different for everybody.

Jpl506 profile image
Jpl506

Everyone is different but within a year my T had come back with a vengeance. Baseline was about 500, now it’s above the measurable limit of 1010. I was on 26 months of Lupron+Apalutimide. Haven’t done anything to encourage T production besides a Mediterranean diet and exercise. No supplements of any kind.

Hopefully you have a similar experience with T recovery.

JWS13 profile image
JWS13 in reply toJpl506

when exactly did it reach over 500...(i.e. 5 mos after stopping,6 mos, 8 mos?) i am now 7 months out (off of orgovyx) and t is only 98) baseline was 289

Jpl506 profile image
Jpl506 in reply toJWS13

At 7 months it was 611.

Adendino profile image
Adendino

urotoday.com/video-lectures...

tango65 profile image
tango65

This article has the info you need

urotoday.com/conference-hig...

London441 profile image
London441

What’s your T now? How much do you exercise and what kind?

jmarsh profile image
jmarsh in reply toLondon441

Less than 10 on ADT. Sporadically use weights and body weight exercise

London441 profile image
London441 in reply tojmarsh

Sorry, of course it’s <10 I missed that you’re still on ADT.

What we learn first is that no one can predict specifically how long until T returns, even our MO. Then we learn the more nuanced truth; no one can even make a decent guess at whether it will return at all. You see the variety of responses here.

Knowing your baseline would have been helpful, but if as you say your ‘stamina was strong and libido was good’ at 56 then it was very likely in the normal range, which is all that matters.

Comparing yourself to the responders should probably start with removing those who had 6 month ADT courses-T recovery is much more likely after 6 months. Also anyone significantly older. Although biological age is more important, there is of course a limit.

Type of ADT is another factor; use of orgovyx means faster T recovery, although one is less likely to have started a course of it 2 years ago as it is still somewhat new.

So if you match yourself against men approximately your age, who did a course of ADT of near equal length and had normal baseline T, there is still a lot of variance.

That variance is often a result of overall health, especially strength and cardiovascular fitness. Think about it: quite often the causes of low T in men as they reach their 30’s and beyond are things like unhealthy body composition (including but not limited to obesity), stress, poor sleep, poor diet, loss of muscle mass and being unfit.

Being as strong and fit as possible gives you your best chance at T return. It is the one thing within your control.

You may not find proof of this, but I can promise you betting your life on it is a great idea regardless. If I were you I would definitely start ramping up from ‘sporadically using weights and body weight exercise’, whatever that is.

Jack54 profile image
Jack54

I keep reading that T is slow to recover in the majority of cases and and in some “never”. I had three 6-mth Lupron shots. Had my last shot June 2021 a the age of 67. Also Bicalutamide 50mg daily which I finished December 2021. Six months after my last Lupron shot in December 2021 my T was <3. December 2023 my T was 67.

I’m still hoping for the word “sloooooooow”. 🙂

Parlorman profile image
Parlorman

I had my last 90 day Lupron shot in early December, finishing two years of ADT for my Gleason 9+, stage four PC. Honestly, I hope my T never recovers because of the associated risk of recurrence of the cancer.

lowT163 profile image
lowT163 in reply toParlorman

According to my docs testosterone will not be the cause of reoccurrence. It will be the failure of the treatment. Believe it or not.

Parlorman profile image
Parlorman in reply tolowT163

My oncologist said something similar except that he said without testosterone the cancer generally wouldn’t start replicating until the androgen independent cancer cells started up.

lowT163 profile image
lowT163 in reply toParlorman

stopping the return of testosterone isn’t something to look forward to. Not sure I will ever stop it again with drugs. It’s only made it to 250/350 since stopping drugs in Feb of 2020. Almost feeling alive. Without supplements.

rfgh20 profile image
rfgh20

My two years are up in May. I'm nervous stopping Lupron and Zytiga.

jmarsh profile image
jmarsh in reply torfgh20

I finish in June. We can compare notes

rfgh20 profile image
rfgh20 in reply tojmarsh

Yes, stay in touch.

Huzzah1 profile image
Huzzah1 in reply torfgh20

My 2 years are up in June. Baseline before treatment was low, 270. I'll take half of that! My MO said I would feel a lot better even. if it recovered to just about 100.

lowT163 profile image
lowT163 in reply toHuzzah1

I wasn’t happy until 350 but not sure if the fatigue was from low T or high glucose. Same feeling.

Garbonzeaux profile image
Garbonzeaux

After being on Lupron for 4 years, I was surprised that my testosterone came back to nearly normal levels after only about 6 months. It has continued to rise slowly for the last 2 years and was 585 earlier this week. Like you, I didn't have a baseline pre-diagnosis.

lowT163 profile image
lowT163 in reply toGarbonzeaux

What is your A1C if you don’t mind saying.

Garbonzeaux profile image
Garbonzeaux in reply tolowT163

Hemoglobin level is a bit low at 13.3 g/dL. Not sure that's quite the same as A1C.

lowT163 profile image
lowT163 in reply toGarbonzeaux

For me the A1c turned out to be the fatigue I was fighting. Still am but for a long time I blamed the adt for all my fatigue. High glucose acts the same as lupron.

Mgtd profile image
Mgtd

Well I am a short timer only 6 months on ADT. Baseline T 687. Two months post ADT 233. I can honestly feel it coming back.

Someone above said they were worried that recovery of T would drive reoccurring cancer. In my mind that is a none issue. Regardless of therapy chosen if it killed/removed the cancer then restoration of T should not be an issue. You had T prior to no cancer so what would the difference be if you had no cancer post treatments and had your T return.

Sometimes we worry to much about the “what ifs” rather move on and enjoy the life we have.

Yes I am a half full glass type of guy.

PS My RO yesterday said I am a typical case for a guy at my age with relatively high T for my age, 78 and T 687 who works out and watches their diet. We know T is built through exercise.

lowT163 profile image
lowT163 in reply toMgtd

Radiation will cut your T off big time if you get the full pelvis shot.

Mgtd profile image
Mgtd in reply tolowT163

Thanks for reminding me. I had the full pelvic area radiated also.

lowT163 profile image
lowT163 in reply toMgtd

My tumor was out and against my rectum. I told him to cook the shit out of me. He said he did. My T is coming back slowly. Only 6 months of adt will make it return much faster.

lowT163 profile image
lowT163

I had similar treatment except the surgery. ( inoperable) Still have my prostate but they cooked the crap out of me. My last day of Zytiga was end of February 2020 and last 6 month lupron shot was august 2019. So 20 months of adt.

Testosterone stayed below 100 for two years. Last summer it hit 358 and life became good again. It has fallen back to 200/250 last 4 months. I’ve decided to supplement starting this week. Should have never felt good. It was amazing almost like before adt. I’ll be shooting for that 350.

Kenny68 profile image
Kenny68

I went off Lupron February 2023… My T has been slow to rise..

SimMartin profile image
SimMartin

I am beginning to feel my head exploding as I try to ‘guess’ what wil happen when I stop ADT for my G9 and RT 14 months ago.

My main aim is to prevent or at least delay as long a possible recurrence- rather than overall survival. So I ageee with Tal A in that regard.

However as I can’t exercise the damage done by low T may be more severe in my case, though I am lean and didn’t have any cardiac event or diabetes issues. I do however have moderate osteoporosis (probably due to being disabled from a child so taking biphosphonate oral whilst on ADT, I probably do not build bone mass in my youth due to polio and now use a wheelchair some of the time.

So the dilemma is less about my FEELING normal (ADT isn’t good but bearable over the alternatives) but if the T never returns or at very low levels, the ongoing consequent damage of low T will accumulate and cause more morbidity- if not mortality!

So the balance is how long any particular individual with their PCa type and General pre existing conditions is advisable,

Seems to me this is the kind of detailed research that would be useful. I am having to decide if to do more than the 12 months or 18 months or full SOC for localised G9 having to take into account the impact of the post ADT recovery time - which it seems is not really predictable.

My oncologist just keeps saying that given I’m 73 now it will probably take many months so I could have stopped the ADT at 6-12 months as OS advantage only around 8% over ten years. But of course as TA says it’s recurrence I am concerned about !

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