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getting back to normal after ADT

Posted by lacraig1 @lacraig1, 1 day ago

I had 3 shots of Lupron and one pill of abiraterone acetate (general Zytiga) to suppress my testosterone. I stopped this, because it was simply too disruptive. Last shot was early December 2025. I still have this disruption. I don't sleep well. I keep waking up, feeling like my hormones are racing around in my body Nap often. I feel lousy much of the day. I'm thinking it's affecting my heart. Want to see an endocrinologist. Anybody else having/had a hard time getting back to normal?

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lacraig1 | @lacraig1 | 13 hours ago
In reply to @jeffmarc "@lacraig1 You’re right I did not mention sleep as a problem, but so many people on..." + (show)
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@lacraig1
You’re right I did not mention sleep as a problem, but so many people on here Have complained about the fact that while they’re on ADT, they can’t get decent sleep. Very hard to get to sleep for some of those people.

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@jeffmarc falling asleep is easy it's the constant waking up that's troubling.

Often when I wake up, some of my body parts are all wired up, and I know I'm not going to fall asleep any time soon. So I go work on the computer or watch Netflix

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roseat | @roseat | 6 hours ago
In reply to @lacraig1 "@roseat I couldn't last 3 months on Lupron. He wanted 3 years. Your PSA is undetectable..." + (show)
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@roseat I couldn't last 3 months on Lupron. He wanted 3 years. Your PSA is undetectable because you are on Lupron. Once you are off, it's a new ball game. My poor sleep is affecting my health. Possibly my heart. I have ED too, but I can achieve an orgasm in about a minute. I have hot flashes and all around lousiness.

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@lacraig1 Have you seen a radiation oncologist or an Urologist for a first or second opinion? Have you had a PSMAPET/CT Scan? Since being on Lupron I now also take Rosuvastatin tablets.

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northoftheborder | @northoftheborder | 4 hours ago

The problem with Zytiga is that it's a first-gen ARSI that requires taking a steroid with it, and steroids themselves can cause or exacerbate side-effects for many people.

The second-gen ARSIs ("lutamides") do not require a steroid, have fewer side-effects for many people, and are somewhat more effective, but they're also *very* expensive (especially in the U.S.), so insurers probably try to steer doctors away from them.

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jime51 | @jime51 | 3 hours ago
In reply to @jeffmarc "@lacraig1 Unfortunately, you didn’t clearly say that your testosterone was still near zero but it appears..." + (show)
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@lacraig1

Unfortunately, you didn’t clearly say that your testosterone was still near zero but it appears that that’s what you meant. You also don’t mention your age with she’s a major factor and testosterone coming back.

After being on it for six months, it took my brother over a year before his hot flashes completely stopped and his testosterone came close to 200..

Here is some information from PCa Commentary about testosterone returning

Examples of the relationship of the duration of ADT exposure to subsequent recovery to their
original T levels after stopping ADT are as follows:
- After 3 - 9 months of ADT nearly all men fully recover by about 10 months;
- After 18 - 24 months of ADT only 60% fully recover by about 3 years; and
- After 36 months of ADT exposure only 50% fully recover by ~ 5 years.
It is clear that after receiving ADT for longer than 6-9 months many men never fully return to their
T baseline. This raises the very important question of whether it is safe to offer replacement
testosterone in symptomatic men who have been rendered persistently hypogonadal (<230
ng/dL).

If your testosterone is not returning after a year, you could get testosterone replacement therapy through injections. It has been shown in recent trials that it does not cause the PSA to rise. That can get you back to feeling normal again. Something to discuss with your doctor.

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@jeffmarc My first blood work six weeks post treatment (18 months Orgovyx) showed PSA still <.01 but testosterone has risen from <10 to 48. Regretfully, I don't have pre-treatment testosterone number. I still have plenty of hot flashes but am starting to feel a bit more "normal."

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kujhawk1978 | @kujhawk1978 | 2 hours ago

Well...

Factors affecting testosterone recovery generally:

Baseline T
Age
Length of time on Systemic Therapy
Which Agents, Lupron vs Orgovyx...
Health issues such as -
Body Weight: Carrying extra body fat, especially around the abdomen, lowers testosterone because fat tissue converts testosterone into estrogen (according to Harvard Health Publishing)
Sleep Quality: Not getting enough deep sleep disrupts the body's natural 24-hour hormone production cycle
Stress: High or long-lasting stress releases cortisol, a hormone that suppresses the brain signals telling your body to make testosterone
Health Conditions: Diabetes, obesity, and specific injuries or infections of the testes can cause levels to drop

Some you control, others you don't.

There are statistics which show T recovery, it can take awhile, 12 -24 months, longer, or not...

There still exists the antiquated (my word) notion that those who come off treatment, T, any T, is "bad." My experience, 18 months of Lupron and 12 months of Orgovyx, T recovered to 100+ in the first three months, 400+ around six months. My first treatment vacation lasted just under five years, we're at 27 months this break, next labs in October, PSA has held stead yat .02-.04.

So, talk with a Endocrinologist, Urologist: since low testosterone persists and significantly impacts quality of life or cardiovascular health, discuss management options,

As others have indicated not all in the medical field are on board with TRT so you may have to consult more than one...

If you do TRT, it goes without saying, continue to monitor your PSA. It may rise at some point, you'll want to know that and in concert with your medical team and the clinical data, discuss treatment choices.

Kevin
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lacraig1 | @lacraig1 | 2 hours ago
In reply to @northoftheborder "The problem with Zytiga is that it's a first-gen ARSI that requires taking a steroid with..." + (show)
Profile picture for northoftheborder @northoftheborder

The problem with Zytiga is that it's a first-gen ARSI that requires taking a steroid with it, and steroids themselves can cause or exacerbate side-effects for many people.

The second-gen ARSIs ("lutamides") do not require a steroid, have fewer side-effects for many people, and are somewhat more effective, but they're also *very* expensive (especially in the U.S.), so insurers probably try to steer doctors away from them.

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@northoftheborder thank you

that's good to know. I am seeing things in this discussion to the effect that this is all unnecessary now

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chippydoo | @chippydoo | 1 hour ago

My T bounced to 230 two months after adt and radiation. 16 months late it is down to 175 and generally feel lousy with brain fog and low energy. PSA undetectable. Frankly, I don't feel much different than when I was on ADT. I don't weight train but on the mountain bike trails for a full body workout 3-4 times a week and have to force myself to get out there.

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rbtsch1951 | @rbtsch1951 | 53 minutes ago

I am on month 9 of a planned 12 months Orgovyx (preceded by a 3-mos Lupron injection ) following SBRT got Gleason 4+5 disease (PSMA disease confined to prostate except for one equivocal external lead node thought to be benign, but included in the radiation port). My PSA is down to 0.04ng/ml as of early July and Orgovyx will be completed in early December per my radiation oncologist. The ADT side effects (especially musculoskeletal pain and mood changes) are worsening as the duration of treatment continues. I exercise 5 days a week including Zumba, Pilates and Yoga. Either light at the end of the tunnel I am growing increasingly apprehensive that my testosterone recovery will be slow in spite of the “promise” of quicker recovery with Orgovyx than Lupron. Nevertheless, I am determined to stay the course for the promise of probably cure. No one ever promised a rose garden but knowing that doesn’t make me feel much happier.

The sexual side effects have taken a total on our marriage, understandably as well. I will persevere …

Will life ever be normal again !?!?

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