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?
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
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.
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.
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.
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.
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.
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.
I was recently diagnosed metestatic. Dr got me on Nubequa and the VA is payingl
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
Has worked well for me so far with no detectable side effects
Now approved for mets
Darolutamide Should Be Available in 2018
Darolutamide Side Effect?
Trade Zytiga for Enzalutamide or darolutamide 
When is enzalutamide going generic? DAROLUTAMIDE?
Any experience with Nubeqa or Darolutamide?
