I am hoping for some guidance for what to do next for my father.
My father is in his early 70s, Gleason 8, PSMA and MRI last year showed no spread, but PSA was rapidly raising.
He had an organ transplant years ago, and a small stroke, takes anti seizure medications, and has a walking disability due to a neuromuscular disease. He already wears diapers for incontinence.
He has been on Orgovyx for 9 months now and two months ago he underwent 5 sessions of MR-Linac treatment.
PSA is now zero, Testosterone is also zero.
We noticed some mental/cognitive decline in my father and the doctor suggested we stop Orgovyx now at 9 months instead of going the full 2 years course.
What would you recommend we do?
Thank you!
Written by
Nickberti
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I would also add darolutamide since the OC suggested stopping Orgovyx. That should hopefully increase his testosterone and darolutamide would still inhibit the androgen receptors everywhere but almost nothing affecting the brain. What i mean is darolutamide very minimally crosses the BBB thus the testosterone he will start making since Orgovyx is stopped will be converted to estrogen in his brain which will be good for his mental health.
My oncologist uses the "keep it for later" explanation, which makes me e uncomfortable as I thought that way of thinking was out of date for at least five years. I've begun to address it directly with him to little effect.
Daro doesn't cause any mental SEs? I don't know that much about it. I understand it doesn't drop T, but thought it in effect cut off all impact of T. Maybe I'm wrong on that. If you're on Daro only, I'd defer to you. I've been on only Lupron for six years with no mental issues. Don't know if Orgovyx differs.
I am definitely not on daro alone. I take Orgo and Daro but i am doing a modified pBAT (p=testosterone propianate) so two weeks out of a month i am only on high T.
On another note I asked for chemo whith Orgo and Daro and he said “you’re low volume disease so we will keep it in our back pocket for later”. I am sure he is speaking from experience as he must see hundreds of patients presently never mind how many have passed.
BAT is interesting but I haven't tried yet (impossible with local docs, maybe with any Florida docs). Following it imperfectly from a distance but difficult to know where to start without a cooperative doc. Interesting, though.
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Opinion sought for ADT treatment duration
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Stopping Orgovyx after six months
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