Anyone have a hard time getting back to normal after ADT?

Posted by lacraig1 @lacraig1, Aug 15 1:54am

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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Profile picture for roseat @roseat

@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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@roseat I am not sure how they could help me. I had radiation. But they have nothing to do with my hormone treatment. PET scan was clean. Urologist. My urologist sent me to an oncologist. He ordered the ADT

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Profile picture for kujhawk1978 @kujhawk1978

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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@kujhawk1978

A year after 44 radiation treatments and 4 months of Lupron my testosterone rose to 122 and then continued to drop to 111 by years end. I am now on TRT at age 84 and things are getting better with most side effects gone in one week. ADT does more harm than good at my age and I should never have been given it.

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I’m starting month 4 of a 6 month Lupron injection. I have 3 remaining SBRT this week for a total of 5. RO is pleased so far. The devastating side effects of ADT all bones aching, hot flashes weight gain mental fog…I doubt I’ll ever go on ADT again. At least your wife didn’t pack up and move out while you were in TURP surgery 🙂 And I got a bad case of Achilles tendinitis from Levaquin due to a UTI. I’m still dealing with it 6 months later. I lift weights 3 days a week & force myself to move but I can’t walk or hike or mountain bike at all, for now. Hope we all improve.

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This is all really helpful news. I was not aware of these studies that T does not in fact help cancer cells. I had my last 6 month shot of Eligard in October of '25. I still have sweats and a bit of weight gain(although I run/walk 6 days a week). I'm a gleason 9 but both PSMA scans were clean and last PSA was <.01. I was/kinda still am worried that when my T does come back, the cancer will rear it's very ugly head. But this news does help my brain in a big way!!! Thanks everyone!! Let's DO THIS!🙌

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Profile picture for pesquallie @pesquallie

@kujhawk1978

A year after 44 radiation treatments and 4 months of Lupron my testosterone rose to 122 and then continued to drop to 111 by years end. I am now on TRT at age 84 and things are getting better with most side effects gone in one week. ADT does more harm than good at my age and I should never have been given it.

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@pesquallie

At 84 that's a good question...why, what was it in your clinical data that led your medical team recommend that?

Did they explore or discuss other courses of action such as MDT, ARI mono-therapy (EMBARK), Estrogen (PATCH) and of course, depending on risk factors...GS, GG, PSADT, PSAV, Genomic issues...co-morbidities, do nothing but monitor.

Your experience is evidence of the need for shared decision making where the patient, you, informed by doing the homework, augmented by the medical team counsel, decides on treatment.

Kevin

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Profile picture for dpayton @dpayton

This is all really helpful news. I was not aware of these studies that T does not in fact help cancer cells. I had my last 6 month shot of Eligard in October of '25. I still have sweats and a bit of weight gain(although I run/walk 6 days a week). I'm a gleason 9 but both PSMA scans were clean and last PSA was <.01. I was/kinda still am worried that when my T does come back, the cancer will rear it's very ugly head. But this news does help my brain in a big way!!! Thanks everyone!! Let's DO THIS!🙌

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@dpayton It can that is why the cancer goes in remission with ADT. If the treatment was successful than the return of T will not activate the cancer.

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Profile picture for jim18 @jim18

@dpayton It can that is why the cancer goes in remission with ADT. If the treatment was successful than the return of T will not activate the cancer.

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@jim18 the common thinking is that ADT suppresses cancer, not eliminates it. But people are posting new apparently new research that adding testosterone has no effect on cancer growing. This would be new to my doctor.

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Profile picture for kujhawk1978 @kujhawk1978

@pesquallie

At 84 that's a good question...why, what was it in your clinical data that led your medical team recommend that?

Did they explore or discuss other courses of action such as MDT, ARI mono-therapy (EMBARK), Estrogen (PATCH) and of course, depending on risk factors...GS, GG, PSADT, PSAV, Genomic issues...co-morbidities, do nothing but monitor.

Your experience is evidence of the need for shared decision making where the patient, you, informed by doing the homework, augmented by the medical team counsel, decides on treatment.

Kevin

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@kujhawk1978

My PSA was undetectable, but I still had very severe side effects a year after treatments ended. I was given TRT since my testosterone was so low (111) and was falling even further. I was diagnosed with hypogonadism before and after prostate radiation and 4 months of TDT. Hopefully my PSA will remain undetectable, I will recover from ED, and no further treatment would be necessary. Historically my urologist did not support TRT but recent test results changed his mind.

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Profile picture for jim18 @jim18

@dpayton It can that is why the cancer goes in remission with ADT. If the treatment was successful than the return of T will not activate the cancer.

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@jim18
While that may be true. In some cases it is not universally true. Many people with prostate cancer, especially those with aggressive cases can still use ADT to bring it down.

I know one guy in particular that has now been on five different vacations with prostate cancer. He stops ADT his testosterone rises. His PSA starts to come back. He goes back on ADT. He’s done this five times each time his testosterone comes back a little less, but his PSA continues to rise Until the ADT has Take effect again.

This is not unique. This is How it works for many people. I know another guy that did it for five years with Casodex.

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Profile picture for lacraig1 @lacraig1

@jim18 the common thinking is that ADT suppresses cancer, not eliminates it. But people are posting new apparently new research that adding testosterone has no effect on cancer growing. This would be new to my doctor.

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@lacraig1 Except for the research on fewer months of ADT being almost as effect as longer terms I am skeptical. So, I would shorten what was 12 months to 6 and what was 24 months to 12. The other item is that if you have run the course of your treatment and seem cured you can add testosterone (TRT) if it does not come back naturally a year or so after the ADT has ended. It can always be stopped if the cancer returns and at that point a person may be able to have effective ADT without any drugs due to the inability of producing testosterone.

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