Side effects after stopping meds

Posted by cheriekhan @cheriekhan, 2 days ago

My husband stopped treatment in June after 2 years in adt, Orgovyx, prednisone for stage 4 A prostate cancer. He is very tired still and doesn't seem to have the energy emotionally, socially and physically for too much. Wondering how long it takes for him to recover from side effects? And should he tell his dr of his symptoms and to check for adrenal gland's function? Want to know how to deal with this for him. He exercises, eats right and is working.

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What were his testosterone levels before, during, and since he’s been off of Orgovyx? It’s testosterone levels that often drive our energy, emotion, social behavior, and physical endurance.

Has his testosterone level returned to near pre-Orgovyx levels?

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I m 20 months post ADT, still fatigued. Testosterone only 99: was 91 three months ago. Recovery is very slow.

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Profile picture for ecurb @ecurb

I m 20 months post ADT, still fatigued. Testosterone only 99: was 91 three months ago. Recovery is very slow.

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@ecurb What also matters is which ADT you were on, how long you were on it, and how old you are:
> Firmagon (degarelix) and Orgovyx (relugolix) leave the body quicker.
> the rule of thumb for the others (Lupron, Eligard, Prostap, Lucrin, Camcevi, Zoladex, Trelstar, Pamorelin, Decapeptyl) is that it takes ~50% more time than the ADT was planned for it all to leave the body.
> with older men it can take even more time (or sometimes not return at all).

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Yep, my MO shafted me with Trelstar. You are correct. I m 77 now-about 3 1/2 years later when I started the stuff.

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You Say he was on Orgovyx And prednisone, But that is not a normal combo. Prednisone is mainly used when somebody is also on abiraterone (Zytiga). Testosterone should come back within 90 days after stopping Orgovyx. Was he also on abiraterone? The drug Could make it take nine months to a year or more before testosterone comes back, Even longer in some people.

As others say you need to find out what the testosterone level is.

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FWIW, I was told the recovery period = the time you were on ADT. Due to my age, 76, I was told some side effects may never go away.

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Profile picture for tbgb50 @tbgb50

FWIW, I was told the recovery period = the time you were on ADT. Due to my age, 76, I was told some side effects may never go away.

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@tbgb50

I stopped 4 months of Lupron 14 months ago after ending 44 radiation treatments and horrible side effects continued. My testosterone did not recover, and I was told this happens to most men my age, 84. My PSA is not detectable. My urologist put me on a very low dose of injected testosterone and most of the side effects were gone within a week. All of my older prostate cancer friends have these same issues.

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Profile picture for Jeff Marchi @jeffmarc

You Say he was on Orgovyx And prednisone, But that is not a normal combo. Prednisone is mainly used when somebody is also on abiraterone (Zytiga). Testosterone should come back within 90 days after stopping Orgovyx. Was he also on abiraterone? The drug Could make it take nine months to a year or more before testosterone comes back, Even longer in some people.

As others say you need to find out what the testosterone level is.

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@jeffmarc He was on Zytega. Right now PSA and T are undetectable.

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Profile picture for pesquallie @pesquallie

@tbgb50

I stopped 4 months of Lupron 14 months ago after ending 44 radiation treatments and horrible side effects continued. My testosterone did not recover, and I was told this happens to most men my age, 84. My PSA is not detectable. My urologist put me on a very low dose of injected testosterone and most of the side effects were gone within a week. All of my older prostate cancer friends have these same issues.

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@pesquallie
Thanks for the info. It's only been 10 days since I got the Lupron shot so I sit around waiting (actually obsessing) for the worst to start. I guess I'm a bit luckier since I only need 28 radiation treatments. Not so lucky since they want me on Lupron for 24 months. I was told it takes 12 months after radiation is over to see if the 2 treatments are successful. I'll decide then if I'll continue with Lupron (or likely switch to Orgovyx). If it's bad news, I may just stop and try to live as normally as possible.

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Profile picture for cheriekhan @cheriekhan

@jeffmarc He was on Zytega. Right now PSA and T are undetectable.

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@cheriekhan
Zytiga can cause too much fatigue for many people. One reason is that it stops the body from producing cortisol, which is essential for being able to stay awake. Prednisone is used to restore that cortisol.

The standard dosage of prednisone Is five or 10 mg. Most people only get 5 mg and if you’re having a lot of fatigue switching to 10Mg Can make a big difference. I know people who have done it and it’s worked quite well.

Something to speak to your doctor about.

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