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Lupron/enzalutamide side effects so severe after 36 wks. getting off

Posted by johnici @johnici, 1 day ago

RP 2018, RT 2020, psa rising Mar2025. PSMA shows 3 small nodes in pelvic area but one so close to bowel stereotactic radiation too risky. Started ADT noted above May. PSA went to 0.026. All known side effects present (flashes, fatigue, dizzy, brain fog, weakness, loss of balance and serious loss of appetite. Everything I liked now tasted bad (metallic), lost 10# off usual 155. Embark study showed dropping ADT could be done. Restart if PSA returns to 2.0. Doc says could be up to 2 years. At 81 the QOL had become so important this was necessary for me. Everyone is different. Check out the Embark study.
Cheers

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jeff Marchi | @jeffmarc | 1 day ago

Ask your doctor to put you on Nubeqa (Darolutamide). It has very few side effects, does not cause fatigue for almost anybody and doesn’t pass the blood brain barrier so it doesn’t cause brain fog.

I’ve been on it for almost 3 years and it’s worked great. I know at least a dozen other people that have been on it many on it as their only drug. Most of these people with it as their only drug are in their late 70’s and 80s.

It Suppresses testosterone so that it works really well, even if you have testosterone.

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johnici | @johnici | 23 hours ago
In reply to @jeffmarc "Ask your doctor to put you on Nubeqa (Darolutamide). It has very few side effects, does..." + (show)
Profile picture for jeff Marchi @jeffmarc

Ask your doctor to put you on Nubeqa (Darolutamide). It has very few side effects, does not cause fatigue for almost anybody and doesn’t pass the blood brain barrier so it doesn’t cause brain fog.

I’ve been on it for almost 3 years and it’s worked great. I know at least a dozen other people that have been on it many on it as their only drug. Most of these people with it as their only drug are in their late 70’s and 80s.

It Suppresses testosterone so that it works really well, even if you have testosterone.

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@jeffmarc
Yeah I wanted to go that way but BCCA (BC Cancer) does not cover it and I am self pay . Getting some testosterone back for a little strength will also be very welcome.
Regards

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jeff Marchi | @jeffmarc | 23 hours ago
In reply to @johnici "@jeffmarc Yeah I wanted to go that way but BCCA (BC Cancer) does not cover it..." + (show)
Profile picture for johnici @johnici

@jeffmarc
Yeah I wanted to go that way but BCCA (BC Cancer) does not cover it and I am self pay . Getting some testosterone back for a little strength will also be very welcome.
Regards

Jump to this post

@johnici
I thought other people in this forum have said that other provinces in Canada do Have Nubeqa available. Is it possible they are working on getting it available in BC?

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carbcounter | @carbcounter | 10 hours ago

Yes, similar case to my friend, just local PC no mets, but after radiation they put him on ADT scheduled for 18 months, but he's been having really low energy then muscle/joint pain to the point of painkillers, his PSA has been "zero" (that's what he tells me) since he began, he's a year or two older than you. If it was me I'd try suspending it for a while and watch the PSA.

He says the muscle/joint pain is getting better, perhaps it came from another source, who can tell.

But he's still just being a tough guy and trying to get to the scheduled 18 months.

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