Darolutamide: My husband's Stanford MO... - Advanced Prostate...

Advanced Prostate Cancer

22,370 members28,134 posts

Darolutamide

kick-prostate-cancer profile image

My husband's Stanford MO would like him to take Darolutamide since it doesn't cross the blood brain barrier thus producing less cognitive side effects. The problem is ... it is only approved for non-metastatic prostate cancer.

Have any of you taken Darolutamide? Any side effects? Any issues getting it approved?

Written by
kick-prostate-cancer profile image
kick-prostate-cancer
To view profiles and participate in discussions please or .
Read more about...
14 Replies
Spyder54 profile image
Spyder54

Surprised you have not had any responses?I am Stage 4 Metastatic since only Oct 2020.

I am on Lupron(3month inject)-prednisone 5mg, Zytiga/Abiriterone 1,000mg, Finesteride, Tamsulosin, St Joseph Aspirin 81mg.

With brain fog, I am interested in Darolutimide and its side effects. Was doing multiplication tables in my mind, to fall asleep, and had trouble with 12’s, 13’s, 14’s. Bizzare to me as they were always automatic, and at 68 should not be fading here.

Mike

CAMPSOUPS profile image
CAMPSOUPS in reply toSpyder54

Fading...speaking of and I am too by the way.

I'm only (only?) 65. Before my dx around the age of 60 the company I worked for over 20 years shut its doors.My son helped me at the auction to secure everything I needed to start a business continuing to serve the customers in light of the company closing.

Just prior to the auction one of the old company fellow employees said to my son:

"You know the XXXX's (brand of printing press) are fading away are you sure you want to do this"?

My son said "that's ok my dad is fading away at the same rate" lol.

j-o-h-n profile image
j-o-h-n in reply toCAMPSOUPS

Old printers never die they just press on..........

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/16/2022 11:03 PM EST

tango65 profile image
tango65

This is info from the FDA about darolutamide:

accessdata.fda.gov/drugsatf...

Darolutamide causes less side effects that enzalutamide or apalutamide. Less hypertension, less falls , no convulsions etc. Medicare covers this medicine, but it all depends on the insurance company managing Medicare part D.

6357axbz profile image
6357axbz in reply totango65

How does darolutamide compare to other similar drugs

tango65 profile image
tango65 in reply to6357axbz

The efficacy in non metastatic castration resistant cancer is similar.

Grumpyswife profile image
Grumpyswife

My husband has been on darolutamide for about nine months. He has tolerated full dose of daro much better then Xtandi.

Xtandi caused him to get dizzy and fall. He had trouble controlling his legs for walking and out of the blue came incontinence. He could only take half the dose.

If we could do it all over, I would have him start with abiraterone/prednisone instead of Xtandi. Or, if you qualify to get daro, that would be an interesting option as well.

MateoBeach profile image
MateoBeach

The only reason darolutamide has not also been approved for metastatic PC is they did not test it for that sufficiently in that group. Expect it to work just as well as apalutamide or enzalutamide, with a better side effect profile.I told my MO that I once had medication induced mild seizures on another medicine (Wellbutrin) and have been advised not to take drugs with risks of seizures. I asked him to record this in my chart. I did this specifically so that when the time comes for me to start an advanced AR drug, then he can request authorization for darolutamide as it will be the only one I should take. Sometimes you need to be proactive in giving them a reason to say Yes.

wagscure259 profile image
wagscure259

No issues getting it approved as CT scan and bone scan showed no metastasis. No cognitive side effects after 9 months on full dose with 2 pills twice a day. BTW it does cross the blood-brain barrier but significantly to a much less degree than say enzalutamide.

Horse12888 profile image
Horse12888

I haven't used it, but my MO highly recommends it to me when the time comes for the precise reason you name. I was so depressed on ADT I could barely function.

Joey40 profile image
Joey40

I was recently diagnosed metestatic. Dr got me on Nubequa and the VA is payingl

Leader4077 profile image
Leader4077 in reply toJoey40

Joey 40Are you still doing well with Darolutamide? I am trying to get it but I have bone Mets. New article in the NEJM on March 24, 2022 showed good results with Daro and Docetaxel and ADT for metastatic patients. Otherwise, they recommend Lu-177 if you already had chemo.

Mike

Blueslover profile image
Blueslover

Has worked well for me so far with no detectable side effects

Teacherdude72 profile image
Teacherdude72

Now approved for mets

Not what you're looking for?

You may also like...

Darolutamide (Nubeqa) Vs Enzalutamide ( Xtandi)

Are there any studies comparing efficacy and side effect profile of darolutamide Vs enzalutamide...
Tinkudi profile image

Any experience with Nubeqa or Darolutamide?

Happy New year Y'all. My Dr is planning to put me on Darolutamide (Nubeqa) after the first of the...
wat380bjw profile image

darolutamide monotherapy experience?

If you’ve had darolutamide mono therapy, I’m interested in your experience with effectiveness and...
ron_bucher profile image

Darolutamide and Desunomab Questions

Prostate was radiated in 2021 and pelvic node and pelvis in 2023. Cancer is growing prostate,...
vintage42 profile image

Can darolutamide be prescribed to metastatic, castrate-resistant PC

Has anyone been prescribed darolutamide (NUBEQA) once you had metastatic, castrate-resistant PC? My...
Eddy-Merckx profile image

Moderation team

Bethishere profile image
BethishereAdministrator
Number6 profile image
Number6Administrator
Darryl profile image
DarrylPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.