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.

Profile picture for jaltorfer @jaltorfer

experience in Darolutamide used for treating your Prostate cancer

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My father's PSA while on Eligard and Nubeqa went down quickly (granted he had SBRT while starting treatment at the same time). His PSA was 0.5 during the oligorecurrence and went below 0.1 within 2 months. It stayed that way for another 16 months before starting a treatment holiday. He did find he had impaired relaxation pattern on his last echocardiogram but he hasn't been in great shape for a while either (he's finally working on that now). The only change I think I'd make if and when he starts treatment again is to swap out Eligard with Orgovyx. The other ARSIs seem to have even worse cardiovascular side effects compared to Nubeqa from what I've read.

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Profile picture for jaltorfer @jaltorfer

experience in Darolutamide used for treating your Prostate cancer

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Yep,,,4 pills a day.

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Profile picture for jaltorfer @jaltorfer

experience in Darolutamide used for treating your Prostate cancer

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All of the -lutamides (2nd gen ARSIs) are

1. Expensive (especially in the U.S.).

2. Lower in side-effects than Abiraterone/Zytiga (1st gen ARSI), since they don't require you to take a steroid with them.

3. Surprisingly effective, especially when initiated right at the start of treatment for advanced prostate cancer, without waiting for castrate-resistance.

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Profile picture for jaltorfer @jaltorfer

experience in Darolutamide used for treating your Prostate cancer

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Has anyone been on Darolutimide only without ADT and has it controlled the PSA?
thanks

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Profile picture for jaltorfer @jaltorfer

experience in Darolutamide used for treating your Prostate cancer

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I am. I stopped the Lupron over a year ago. And so far so good.

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Profile picture for kuz @kuz

Has anyone been on Darolutimide only without ADT and has it controlled the PSA?
thanks

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@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.

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Profile picture for Jeff Marchi @jeffmarc

@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.

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

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Profile picture for round5 @round5

I am. I stopped the Lupron over a year ago. And so far so good.

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

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Profile picture for kuz @kuz

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

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@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.

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Profile picture for jaltorfer @jaltorfer

experience in Darolutamide used for treating your Prostate cancer

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@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?

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