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Going off ADT after 3 years

Posted by shelby29 @shelby29, 3 days ago

Been on Eligard for 3 years. History: Gleason 8, stage 3tb. Radiation and Zytiga, but had to stop Zytiga after 11 months due to heart attack. Kind of scared to quit Eligard cuz psa has been zippo throughout. However, would love to get body back to normal, i.e. build muscle, grow body hair, libido, etc. How did others do after quiting ADT injection?

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ellen45 | @ellen45 | 18 hours ago
In reply to @jeffmarc "@ellen45 If his PSA is Rising ask the doctor to prescribe Darolutamide. I was on Zytiga..." + (show)
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@ellen45
If his PSA is Rising ask the doctor to prescribe Darolutamide. I was on Zytiga for 2 1/2 years and in that time, my PSA was undetectable for only one month. It also caused me to have four Afib events with the last one landing me in the hospital for four days With a pulse of 175 standing. After getting off of it, I had to have a metastasis on my spine zapped, So it really wasn’t a great help.

My oncologist pulled me off and put me on Darolutamide And for the last 23 months, I’ve been undetectable. I am 78 in two weeks, And I’ve been on ADT for almost 9 years.

If you attend one of the ancan.org Advanced prostate cancer weekly meetings you will find that at least a dozen people there, most in their late 70’s and 80s are on Darolutamide. Many of them, taking it as they only drug.

The reason that drug is the drug of choice is because it has the least side effects and doesn’t pass the blood brain barrier, causing brain fog Like Zytiga does.

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@jeffmarc Thank you so much! We go on Friday to the oncologist. I’m very anxious to see hubby’s psa results. I have paid much more attention to everything than Doug does. I’ll let you know what happens and I’m going to join ancan.org

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northoftheborder | @northoftheborder | 17 hours ago
In reply to @shelby29 "After taking Zytiga for 11 months, I had a heart attack and 3 stints. I was..." + (show)
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After taking Zytiga for 11 months, I had a heart attack and 3 stints. I was immediately taken off it.

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@shelby29 Private insurers likely love Abiraterone (Zytiga) because it's old enough to be out of patent and there are cheap generics available.

Unfortunately, unlike the newer (and more expensive) -lutamides, Abiraterone requires you to take a steroid with it. I wonder how much the steroid increases heart-health risk.

I was on a steroid in hospital for a few weeks in 2021 to try to bring down the post-surgical swelling in my spine: it didn't affect my heart, but it did induce diabetes, and I ended up needing regular insulin injections. When we stopped the steroid, my blood sugar quickly renormalised.

Steroids can be nasty for some of us — it's good to avoid them if you safely can. 🙁

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ededed | @ededed | 12 hours ago

I was on ADT for one year. Started on firmagon, switched to Orgovyx. Stage 3b, cancer escaped prostate and invaded seminal vesicles and outside of colon. PSA at diagnosis 54.0. I was treated with 42 sessions of IMRT radiation, no surgery.

I quit ADT because of severe joint pain.

After diagnosis I started taking a cup of Turkey Tail mushroom tea daily. Turkey Tail mushrooms have been shown in research to kill prostate cancer stem cells. Now, nearly 5 years after diagnosis, and 4 years after stopping ADT, my PSA is 0.08.

I wish you the best possible future.

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