Can anyone share their experience with Nubeqa (darolutamide)?

I have been on Nubeqa for about 3 years plus ADT. I'm denovo stage 4 metastatic to the bone only. PSA is undetectable. Just had a PSMA-PET on 10/6/2028. Results - "No evidence of regional or distant metastases with PSMA uptake." All bone metastases have no abnormal PSMA uptake. Nothing in the lymph or organs.

Had a bone scan on 06/04/2025. Results "Interval Improvement - Decreasing tracer activity in areas of known bone metastasis with no evidence of disease progression."

Nubeqa does not cross the blood brain barrier - so no brain fog. ADT + Nubeqa does however produce hot flashes. Some are just terrible.

Everyone is different, but I think Nubeqa continues to test out better than the other ARSIs with regard to Overall Survival, time to castrate resistance, and time to pain. By the way, the ARASENS trail still data still lists time to castrate resistance as Not Reached (NR).

Do not let any doctor tells how long one can live with this disease. They do not know. Everyone is different. Every cancer in each of us is different. Everyone's ability to handle treatment and how much are different.

I chose to carpet bomb the cancer upfront. Radiation to the spin (10 cycles) and ribs (5 cycles) first to shrink the metastases, Casodex for a month, ADT and Nubeqa, Xgeva, and 10 cycles of chemotherapy. I would have done 2 more cycles if my doctor would allow it.

You too!!!

I wish you the best. Hang in there.

Only bone aches and bad fatigue. I wish you well in your treatments.

Well, as they did not get clear margins when they removed my prostate and my PSA is climbing is it is considered metastatic. I've had 3 PSMA scans with the results of "No detecable cancer". So I've got my fingers crossed for the future.
The Scan were done over the past 3 years when my PSA was 22/12 and 32.
HTH

Is yours metastatic?

That's great!!

No. Just Nubeqa and Orgovyx. My PSA in February was 32 and testosterone in the 5 hundreds
After one month my PSA was 4.1. Testosterone was 5
In June it was .24 and no detectable Testosterone.
So it seems to be working.
HTH

Wow! Three years. I thought I was long at two years. Started when I did chemo, soon after I started Lupron injections. Stopped Lupron after 13 months. So I’ve been on Nubeqa monotherapy for almost a year. Primary side effects include gynecomastia and fatigue, especially in my legs. My PSA has stayed negligible while my T has risen to 350.

I take a shot every 3 months along with nubeqa. I'm like you I'm thankfully for every day. Do you have any pain anywhere? My psa dropped from 53 to 19.