Can anyone share their experience with Nubeqa (darolutamide)?

Posted by markagottlieb @markagottlieb, Apr 23, 2024

my husband will start Ubeqa this week. I would like to know others experiences.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

tcopel | @tcopel | Jul 25 6:17pm

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 | @cencalwife | Jul 24 11:33am

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.

lsk1000 | @lsk1000 | Jul 24 7:29am

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.

papamark | @papamark | Jul 23 9:01am

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

Colleen Young, Connect Director | @colleenyoung | Jul 22 9:12am

In reply to @jaltorfer "experience in Darolutamide used for treating your Prostate cancer" + (show)

@jaltorfer, you may be interested in this related discussion:
- Can anyone share their experience with Nubeqa?https://connect.mayoclinic.org/discussion/can-anyone-share-their-experience-with-ubeqa/

Have you recently started treatment with darolutamide (Nubeqa)? How are you doing on it?

round5 | @round5 | Jul 22 8:09am

In reply to @kuz "Thank you for the information. Did your doctor suggest stopping Lupron or was that your request?" + (show)

@kuz Totally mine. He wanted me to continue Lupron but my research caused me to choose otherwise. He was ok with it. The good thing about Dr.Kwon. You can work with him for your own individualized treatment plan.

kuz | @kuz | Jul 21 11:12pm

In reply to @round5 "I am. I stopped the Lupron over a year ago. And so far so good." + (show)

Thank you for the information.
Did your doctor suggest stopping Lupron or was that your request?

kuz | @kuz | Jul 21 11:02pm

In reply to @jeffmarc "@kuz I know a few people that have been on for more than two years over..." + (show)

Thanks for the info.
I am not needing it now but as you know we like to plan ahead.

Jeff Marchi | @jeffmarc | Jul 20 11:10am

In reply to @kuz "Has anyone been on Darolutimide only without ADT and has it controlled the PSA? thanks" + (show)

@kuz
I know a few people that have been on for more than two years over at The ancan.org weekly advanced prostate cancer online meeting.

A guy I know who has an aggressive case of prostate cancer used to attend by monthly meetings I went to. He switched to Darolutamide when he heard me recommended it. He moved to South Africa and I heard from him a month ago and he said he was just on Darolutamide And it was working great for him. He’s 80 years old and figures it’ll keep him going without problems for a number of years.