Can anyone share their experience with Nubeqa (darolutamide)?

It works. Psa last August was 25. It is now undetectable!

In combination with Orgovyx, Nubeqa at half dose (one 300mg a day instead of 2x daily) seems to have reduced PSA to undetectable. I confessed to my doctor that I reduced the dosage and he told me to carry on. It’s difficult to asses the side effects when taken in combination, but it’s said it’s the ADT that is “killing” some of us with fatigue.

Hello,

Nubeqa alone, has not worked for my spouse. He stopped Orgovyx due to causing high bp and heart issues. His breasts are very sore, sometimes even clothing rubbing against skin is bothersome and his energy levels are low, but that has been with Orgovyx and Lupron as well. He's 59, diagnosed with mets at 51.

i am on Nubeqa and Orgovyx ( and proton radiation) at the moment.
I have the nuisance hot flashes and some fatigue which i push through.
Over all, I’m doing ok with the meds.

@cencalwife I was lucky to have treatment by a European GU Oncologist who performed a extended pelvic direction. During that procedure, he advised me that a short, single course of radiation would prevent some of the issues with male breast tissue, mainly being painful growths. It worked, and I have a friend back here in the states who did not have the single dose of radiation and they did surgery to remove painful growths. Just some thoughts from my experiences, I was diagnosed at 49, I am on Nubeqa and I have the usual hormonal issues, weight gain, I get emotional and the hot flashes, oh yeah, fun times!

@papamark, that's great news. Did you have any other treatment in addition to Nubeqa (darolutamide)?

I've been on Eligrad ADT 3 month injections and Nubeqa 600mg daily for almost 4 years. I work as a senior software engineer and Nubeqa does not cross the blood brain barrier and cause me brain fog. I do get fatigue and hot flashes but I just accept those side effects as my new normal.

@colleenyoung
Hey Mrs Colleen, I have been through the ringer. I have had radiation 3x, chemo(Docetaxil), prostatectomy, extended pelvic dissection, Hilar lymphnodes removed, AU Sphincter, the full monty!