Testosterone recovery after ADT - Advanced Prostate...

Advanced Prostate Cancer

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Testosterone recovery after ADT

tunybgur profile image
49 Replies

I have been reading about Testosterone recovery after ADT, and trying to get some information about the likelihood of never recovering my T at age 77 after 2 years of ADT.

Is there anybody out there in their mid 70's who have completed their ADT and recovered their T? Please give us the good news....or otherwise.

I am currently just over 12 months ADT (Prostap) and concerned I may miss the boat if I stick it out for the full 24 months, my energy levels are at rock bottom and depression is setting in as I consider never recovering my T.

I have found recent research which indicates 18 months is the optimum ADT time for advanced PC cases, and testosterone recovery is better with the shorter course.

I have pretty much decided to stop after 18 months and accept the risks involved, I'm sure my Oncologist will rather I stick it out for the full term, but he isn't the patient.

Any comments or suggestions as to the best way to improve my chances? Exercise etc?

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tunybgur
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49 Replies
6357axbz profile image
6357axbz

Good chance your T will not recover

Lizzo30 profile image
Lizzo30

The older you get the harder it will be for you to recover testosterone production ?

tunybgur profile image
tunybgur in reply toLizzo30

I know all this, my question was are there any examples of T recovery after 18 months ADT in older men?

Adlon57 profile image
Adlon57 in reply totunybgur

I have similar position after misdiagnosed Prostate Cancer episode, the Decapeptyl SR injection and 20 sessions of radiation, "are there any examples of T recovery" after Sep 2022 [25 months] 68 years old?

7hcpgolfer profile image
7hcpgolfer in reply totunybgur

My T level recovery has been slow. LastJuly it was 150. I took testosterone Cypionate and went to 1045. I'm 73 and the energy in the gym was unbelievable. Dumbell curls with 50 lbs on each arm. It raised my blood pressure. My Urologist wanted me off and prescribed clomophine. I'm at 320 now. It has stabilized. I would prefer a higher T level. PSA 0.01.

maley2711 profile image
maley2711

I would suggest Googling your question...there are studies that will pop up that address your question. Recovery sucks for us oldies.......and my experiene is that many Docs don't want to discuss the ramifications of prolonged ADT. I assume you had radiation + ADT? If so, a consortium study of 10,000 + men who had RT +ADT concluded that 19 months ADT was the optimal to maximize overall survival at X years. If high risk PCa, especially those men who had Gleason 9-10, the longer the duration, to infinity, the better the chance of escaping death caused directly by the cancer, and the greater the chance of avoiding metastasis. However, overall survival did not increase for men who did more than 19 months. I think this outcome reflects the harm that castration, ie zero T, does to other aspects of health!!!!!!!

My youngish RO understood my concern about existing borderline osteoporosis and prolonged ADT.....he advised the standard 18 months for Kaiser patients, but was not stridently opposed to a lower duration of maybe 12 months. That consortium study found that the benefit past 12 months for overall survival was very marginal......most benefit comes from 1st 12 months.....seems to be what we would expect!!! I'm now with an MO outside Kaiser, and he was very pessimistic about my stopping at even at 18 months with my Gleason 4+5. I guess the argument for longer duration is that dying of anything but PCa is worth the negatives of longer ADT. There IS a fairly new trial that is specifically testing 12 months, but results are not yet determined, unfortunately. Most trials have been for either 6 months or more than 18 months.

Wgly profile image
Wgly in reply tomaley2711

Do these studies separate by age? Or is it agism bias against us?

maley2711 profile image
maley2711 in reply toWgly

Yes, they do show results associted with different ages.

London441 profile image
London441

Your physical condition is much more important than your age. You need to exercise as much as possible WHILE on ADT, especially weights or some form of resistance training.

T may come back fully or not. Mine came back completely 6 after my last Lupron shot wore off. I was ‘young’(66) but I doubt it would be substantially different now. Admittedly I exercise a great deal and did throughout my 18 months on ADT.

The biggest mistake guys make is expecting T recovery alone to be a magic bullet. That returning T-however much you get back-really only works as hard as you do. T recovery is nice, but what you want is to augment it as much as possible .

tunybgur profile image
tunybgur in reply toLondon441

I agree, age is just a number, I was super fit before my ADT and radiotherapy/brachytherapy messed up my bowels, bladder and energy levels.

I still regularly go to the gym, my cardio has definitely suffered, I can't do the same as I used to on the cross trainer and treadmill, but I can still do the weights I used to do before treatment.

I am concentrating on core strength exercises in order to try and get my bowels and bladder back to normal, but it's still up 3/4 times a night at the moment, I'm not giving up though.

Good luck

Nomiskneh profile image
Nomiskneh

Mid seventies., Gleason 9. After 35 sessions of RT and 24 months of ADT my T came back to 240 within 6 months after the end of ADT. Nine months later (now) It has stayed about that number. Erections less hard, but "workable". PSA still <0.1.

Best wishes,

Nomiskneh

tunybgur profile image
tunybgur in reply toNomiskneh

That's great to hear, I don't expect miracles, just a bit of T to give me some more energy and relieve my depression!

7OaksTom profile image
7OaksTom in reply toNomiskneh

What about orgasm?

Nomiskneh profile image
Nomiskneh in reply to7OaksTom

Hello Tom,,

Before the PC-treatment my orgasms were quite weak. Rather strangely after the PC-- treatment, they have become quite stronger! No ejaculation though (apart from some cristal clear seminal liquid). Libido is also (more than) OK.

Best wishes.

janebob99 profile image
janebob99

The rule of thumb is that 50% of men recover their baseline T after X months, where X = the duration of ADT treatment. So, for 2 years of ADT, expect (on average) that it will take 2 years to recover your baseline T. Unfortunately, there is a large scatter (~ 2X) in the data.

Seriously consider taking supplemental T. You are hypogonadic. See an endocrinologist. Continue to monitor your PSA, and stop taking TRT if your PSA doubling time is less than 8-9 months.

Parlorman profile image
Parlorman

I’m 72 years old and had two years of ADT with Lupron concurrent with 38 rounds of radiation after prostatectomy for Gleason 9 PC. During ADT, my testosterone was around 6. Three months after ending ADT it was 64. At six months it was 374. It can definitely come back quickly, but my oncology team was very surprised.

tunybgur profile image
tunybgur in reply toParlorman

That's the sort of story I want to hear, there's hope if you are positive!

Garbonzeaux profile image
Garbonzeaux

Yes. I'm 75 and was on Lupron for over 4 years. After going on ADT vacation, it took me the better part of a year, but my T came back to well over 600.

tunybgur profile image
tunybgur in reply toGarbonzeaux

Great to hear!

ventusbella profile image
ventusbella

I am going to finish 18 months of ADT next week. I am really tired of SEs and looking for the excuses to stop ADT. Your posting gave me strong background of my will to stop ADT. My doctor has very bad bedside manner and he doesn’t even listen to my suffering of SEs.

Thank you for your posting!

turkeyjoe1 profile image
turkeyjoe1 in reply toventusbella

Gleason 9 , 44 IMRT treatments. 67 years old. ADT for 19 months. 1st two 3 months PSA tests were.01 after stopping ADT. Next 2 tests T 235 PSA .16 PSA .30. I don't regret taking that break. Next test Dec to see where we go. URO talking about waiting for 2.0 for a scan or doing intermittent ADT sooner.

tunybgur profile image
tunybgur in reply toventusbella

Exactly my thoughts, it's your body and your doc's are not having to live with the SE's. Quality of life is important.

Aldo62 profile image
Aldo62

There are studies out there of something called BAT therapy, an approach developed at John Hopkins that has met with some success. Alternating High T with ADT. It's meant to resensitize the cancer cells to ADT when ADT is failing, but it also creates a vacation of normal or high T. ncbi.nlm.nih.gov/pmc/articl...

tunybgur profile image
tunybgur in reply toAldo62

Yes I have heard of this, trying to lure those pesky little cancer cells back and then clobbering them!......makes sense to me

SteveTheJ profile image
SteveTheJ

I can tell you only what my experience has been. Age 63, started Erleada and Lupron (3 months) in May 2020. Treatments have gone really well so last Lupron injection was July 2023. In January 2024, testosterone was 7. Most recent test was 120.

Before therapy was 400.

tunybgur profile image
tunybgur in reply toSteveTheJ

All going in the right direction 👍

Bangkok profile image
Bangkok

I've been off Lupron for almost two years. I'm 77, run 5 K four times a week, cycled over 1000 K across France last spring and have re-enjoyed a (modified) sex life again. However all good things come to an end in stage four world. My Psa is rising again and soon the 'holiday' will be over - but its been a great last kick at the can. When I start treatment again I will try to hang on to my 'gains' as long as humanly possible with special tenacity for my exercise routine for this is the centre piece of good health.

tunybgur profile image
tunybgur in reply toBangkok

It's quality of life that's important, not just hanging on to show a good survival score.....I'm the same age as you, but my regular running was curtailed by arthritis in my hip several years ago, I get my exercise playing golf and doing gym sessions three times a week.

I would love to disappear into France on my bike but my wife would probably divorce me! Keep it up while you can!

Good luck!

HaakonR profile image
HaakonR

I had advanced stage prostate cancer back in 2020. Caught very early. I did 2.5 months of radiation. Could not do Proton due to my Gleason being 5-5 10. Concurrently I was on Lupron and Zytiga. Protocol was three years, but I did two years to the date. I’ve been off now 2 years and after my PSA began to rise a scan indicated a mass in my chest wall. I am now back on Lupron and now receiving Proton Therapy . I am 63.

tunybgur profile image
tunybgur in reply toHaakonR

Good luck

RMontana profile image
RMontana

Here are some articles that may be of interest. Sadly Doctors do not spend much time talking to PCa patients about what happens when a man doe not have testosterone. Its not all about sexual disfunction and much more is affected by the lack of TET...here are some things to chew on. Rick

Low TET n Castrate Resistant PCa; healthunlocked.com/active-s...

Life with TET (Good Bad and Ugly); healthunlocked.com/active-s...

Recovering TET Naturally; healthunlocked.com/active-s....

TET Recovery Post ADT n RT; healthunlocked.com/active-s...

tunybgur profile image
tunybgur in reply toRMontana

Took a while to read them all, but it is astonishing that health workers would willingly inflict this on their patients without fully explaining the consequences, I guess because a good number would think twice, and consider which is the lesser of two evils, but I guess PCa will kill you eventually 😕

RMontana profile image
RMontana in reply totunybgur

True...I think if Dr's told us what was really going to happen 50% of more of men would be 'Deer in the Headlights.' They would do nothing and doing nothing is standing on the train tracks in full view of the engine lights coming and not moving...but, we are not children either. We can be told of the consequences if informed on how to alleviate/ reduce/ prepare for and treat the conditions that will afflict us. Here is where I have a gripe against Dr's.

OK, they dont want to get into the whole 'sexual health,' and QOL arena; fair enough. There are plenty of experts who DO get into these matters. They should/must be part of the team that treats us...but they are excluded, even shunned. Too complicated for our Dr's' to include them. What is left is, for men to by trial and error, FIND all the complications then deal with them as they appear... many of which are made chronic or irreversible due to how late we act. Too bad...if only I had one more life left to live...oh well. Not all bad, but man oh man if I had only known. I could have been a lot better off. I hope somehow, out there somewhere, someone is reading all this and using it to their advantage...its my only therapy...Rick

tunybgur profile image
tunybgur in reply toRMontana

Well I think the doc's don't want to stir up a lot of additional questions, too much information will cost lives I guess.

I'm thinking of getting a pump to try and stop my dick shrinking any more, hopefully it won't be too late....?

Good luck

maley2711 profile image
maley2711 in reply toRMontana

I agree. IMHO, malpractice not to give patients full disclosure on what the best studies have found re probabilities of SEs for ANY treatment....adults shouldn't be treated as children. Maybe the reason is limited time with each patient? So many men reinventing the wheel b researching all this crap........

BanjoPicker profile image
BanjoPicker

After a 4 month Eligard shot it took 7months to recover 75% of my pre-ADT Testosterone Level. Mid 70’s.

tunybgur profile image
tunybgur in reply toBanjoPicker

....but it did mostly recover, that's the important bit!

BanjoPicker profile image
BanjoPicker in reply totunybgur

I agree. I feel “normal” at my current T level, even though it’s 100 points lower than before ADT. At age 76 now, who’s to say it would have fallen a few points due to aging without ADT treatment.

jackwfrench profile image
jackwfrench

Glad most of you guys can stop ADT and can attempt to regain T, we discovered my PCa escaped the pelvic area BEFORE I had the RP so it's considered to be in my bones and therefore on ADT (Lupron + Zytiga) rest of life; no T.

Mischa1111111 profile image
Mischa1111111

I'm 69 going on 70. I did stick out the 24 months and I was really concerned . Got a lot of encouragement to stick it out and I did. About T coming back, i Don't know about that and concéntrate on the things I can do for now. Energy levels are pretty good even thought I slacked off a bit with exercise since I finished the treatment and I think that's important as I want to stave off osteo and arthritis if I can . I get lab work in December. IfI there IS a change in T and PSA is good I will report it here. Anyway the decision is yours and wishing you all my best. Hopefully someone has a positive T level experience after treatment.

lopwillie profile image
lopwillie

I am 87 years old. My last Testosterone test was 324, last year it was at 113. Been off all ADT for 2 years now. PSA is at 9.06 and this weeks PSMA shows one new spot on my tail bone. I going to see the Radiologist next week. Quality of life is great. Cheers Bill Weismann

tunybgur profile image
tunybgur in reply tolopwillie

Good luck

duke69 profile image
duke69

I was on Orgovyx for 2 years and Zytiga for 18 months, stopping both in early October last year at age 76. My PSA had been undetectable for 18 months. 3 months after stopping the combo, my T was 252 and by 6 months it was up to 403. As of my last MO visit (8/24), my PSA was still undetectable and T at 412.

While my MO originally suggested Lupron, I insisted on Orgovyx based on their studies of fast T recovery. For me it worked even after 2 years of ADT.

tunybgur profile image
tunybgur in reply toduke69

Where did you find out the differences in the ADT agents and T recovery?

duke69 profile image
duke69 in reply totunybgur

Here is a link to an article from the National Cancer Center

cancer.gov/news-events/canc...

You can also go to the Orgovyx web site to get specifics about the trials on testosterone recovery

tunybgur profile image
tunybgur in reply toduke69

Thanks, that's very useful

NotDFL profile image
NotDFL

Some more 'good' news:

I was in my early seventies and on Lupron for 18 months. Afterwards, T came back to a reasonable level in a reasonable amount of time. Have been feeling fine; now in my eighties.

tunybgur profile image
tunybgur

That's the sort of story we want to hear!

Wgly profile image
Wgly

This may be out of bounds. Are there any Onc's in S. California (or in Phoenix, or in between) sympathetic to this for us very old guys?

Does the 18-month duration for ADT such as for Lupron, Xgeva and Zytiga apply? My PSA and T have been too low to read since 4/23. No suggestion of treatment change, but weakness, fatigue SE's are bad.

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