Can anyone share their experience with Nubeqa (darolutamide)?

I am 72, 9th month on Nubeqa, upon diagnosis last Oct, by PSA was 62, metastatic PC. Started Nubeqa and Firmagon right after the biopsy results. PSA dropped to 1 by the end of November and undetectable by Feb,
I have been good at managing the ADT side effects, which can get bad if you are not active. I am a life long weight lifter, so I have continued my normal workouts all through this time, My strength has not changed, in fact over the last 2 months I am getting stronger and rarely experience ADT fatigue, but I still have hot flashes.
My doc told me Nubeqa has fewer side effects than the other 2 gen androgen blockers. Luckily my Plan D prescription insurance pays for hit, it is very expensive otherwise.

I have been on Nubeqa for 3 years. I have stage 4 prostate cancer and I also have chronic lymphocytic leukemia. I’ve had the CLL for 20 years. I tell you this because it’s hard to say if some things I notice are from my medications or from the cancers themselves. However, since being on the Nubeqa I have had an increase in blood sugar, pain in my arms, a decrease in my white blood cell count and increased fatigue. But, I am also 76. So it’s hard to say my symptoms are from the Nubeqa. I can tell you that between the Nubeqa and Lupron that I am taking, my PSA and testosterone level are virtually 0 and has been 0 for the 3 years I’ve been taking them. They are definitely worth the side effects that I have experienced. Best of luck to you.

My oncologist is more amenable to adding Nubeqa rather than replacing Orgovyx with it, which is what I’d prefer after one year. Yes, Orgovyx is also very expensive: nearly $9 K retail monthly or $3500 insurance cost, but $125/mo coinsurance which very fortunately is being covered by a grant through Biologics pharmacy. Grateful!

BTW
My care team is really great a monitoring my blood work on 3 month intervals now, ADT impacts calcium and D3 levels. My D3 levels were borderline low the first few months, I am now taking 7000 units of D3 each day, my D3 is approaching the 50 range, which is very normal. The impact of this is I feel much better the last month or so. The ADT side effects are very minimal now. I have also improved my diet with healthy choices and more daily protein. No junk food, I even have given up my normal weekly glass of wine😊

Nubeqa is a little more, about $14,000 per month, retail and it won’t go generic until 2036 . So thankful my insurance covers it. But I do have a $2000 deductible each year.

Thanks for your response vbadams. Had colonoscopy which showed something d; referred to urologist PSA was 54 had PET scan spred to lymp node in clavicle and bone in pelvis. Started Nubeqa along with an injection ever 3 months after lst injection PSA went from 54 to 17.

Yes, I'm grateful for my Medicare D $2K coinsurance limit, for sure! I think it's interesting that I'm credited not for what I pay but rather for what I'm charged. With Orgovyx, I paid my standard $125 for the first month but a grant is paying for this calendar year. Since I'm also taking Eliquis as prescribed by my cardiologist, my charges hit the $2K mark mid-spring. And with radiation, I hit my $4K major medical coinsurance limit early, so my summer colonoscopy and hand arthritis surgery had no copay, as do PT sessions afterward. Those caught without insurance can be easily bankrupted. I'm understanding better why insurance premiums can be high.

Does anybody have night sweats? The heat seems to affect me more now and I sweat at the drop of the hat. Thanks to all have posted various comments. My doctor told me I'd always have to be on medicine along with injections. I thank God for medicine and each day is a gift.

My husband recently started Nubeqa after not being able to tolerate Zytiga due to elevated liver enzymes. He has been taking Nubeqa for about 10 days and started experiencing nausea and vomiting today.

Wondering how 'common' nausea and/or vomiting is for other patients?

I currently take Nubeqa, I always take it with food and have not had any digestive side effects. Been using it for 10 months now. My pharmacy told me it will upset your stomach if you take it in on empty stomach.