Hello,
I have a question regarding my dad taking Xtandi every-night since 2 months ago , he ain’t like before, I can feel it , he has no energy and very fatigued, kinda depress , he used to walk but seems very difficult for him now, I was thinking if it’s ok to ask the MO to reduce it to 3 pills ? 2 pills maybe ? Metastatic cancer, into this journey since January 2020, had radiation, currently under ADT and Xtandi, psa very low, do you think it’s ok to go with less ?
I reduced it to half dose for a couple of week's then added a 3rd pill and finally a fourth. That seemed to resolve some of my side effects. Low hemoglobin could account for some fatigue. Check the blood work. Good luck.
Thanks for responding, He started with 2 pills and reached to 4 recently, can we go back to 2 again? Is it safe? and all his lab tests show low red and white blood cells which I think it’s the side effect of radiation as well as ADT, what can I do to resolve this issue , the MO suggested nothing rather than taking B12 supplements.
I can't give you medical advice just some ideas that worked for me. A blood transfusion should boost blood count it worked for me.
Will it be as effective - no. Will it reduce his side effects - yes. That's the trade-off. If insurance agrees, he can try Nubeqa instead - it may be less fatiguing. Has he tried Zytiga?
Yes, he has tried Zytiga, I guess it made some problems for his liver so MO changed it to Xtandi, thanks Allen, I’ll discuss Nubeqa with his doctor 🙏
Do you think Lu177 is curative for low burden metastatic PCs which is still responding to ADT ?
No, it is not curative. There are no known cures for metastatic PCa. It is a disease that is managed rather than cured.
Nubeqa (darolutamide) is approved for non metastatic castration resistant cancer.
accessdata.fda.gov/drugsatf...
You could consider treatment with Lu 177 PSMA which has low side effects unless there is bone marrow infiltration caused by large number of bone metastases. There are clinical trials:
Does this treatment, Lu 177, cure his cancer? He had few bone mets that seemed gone after his psa dropped to undetected level!
No, is not a cure. If there are not mets in a PSMA PET/CT he will no qualify for Lu 177 or Ac 225 PSMA treatments. With undetectable PSA these PET/CTs may not show any cancer. It does not mean the cancer is cured.
He may have undetectable PSA meanwhile he is taking Xtandi full dose. If he reduces the dose of Xtandi his PSA may start to increase.
My husband lost his fight in January after Xtandi, which had made his last weeks difficult, failed to work. He went from an alert man to being very fatigued and nauseous and, at times, confused. I believed the confusion was caused by the medication. He was admitted to hospital for tests and medication was stopped. I researched the half-life of Xtandi which was 8.6 days. He was gradually improving mentally by day 9. Unfortunately the disease progressed and claimed him after 3 weeks but his mental state was improved. He had been on 4 capsules daily so your father should ask about a lower dose. Good luck, Selaw
I reduced my dose to half per my MO after taking it for about 3 years at full dose, side effects seemed cumulative and became intolerable. It reduced side effects and remained effective for over two years, my PSA was undetectable. Recently my PSA has become slightly detectable again and I increased to 3 pills, definitely feel the difference but PSA is holding steady, even reduced a bit, still slightly detectable. I’ll see how it goes on the higher dose, I may vary the dose and go back to 2 for a short time if SE’s become troublesome again. Definitely consult with your MO about dosage, some guys do fine on a lower dose. The full dose is not written in stone.
Ed
I had such miserable side effects with 4 pills of erleada ,dr lowered dose to 3 made it tolerable and psa has stayed undetectable.
I'm stealing from Tall_Allen "There are no known cures for metastatic PCa. It is a disease that is managed rather than cured."
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 04/10/2021 7:05 PM DST
Half Dose Abiraterone 
ENZALUTAMIDE (XTANDI) DEVASTATING
Another Xtandi question -- Vacation time?
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