Darolutamide and headaches/nausea

[wagscure259]

Diagnosed 11/2012 Stage M1b Gleason 5+4. Treatments include Firmagon injections 1 month to avoid testosterone flare then Lupron. Bicalutamide added 4/17 . PSA undetectable until 1/2020 then slow rise to .67 3/2021. CT and bone scans clear (I am aware other scans more accurate) , precribed 1200 mg of darolutamide daily with food in doses of 2 300mg tabs in morning and evening begun on April 6, 2021. I have had intermittent headaches and nausea throughout the day and night. MO at MSK placed the darolutamide on hold for 1 week as of today. These symptoms are listed as possible side effects of the med. I do have a history of headaches/migraines and there is a familial hx of same which resolved with 800mg of ibuprofen in the past but no longer effective) If med vacation does not abate symptoms a brain MRI will be ordered. Anyone else on darolutamide experiencing these symptoms? Thank you in advance of your responses.

[joeguy]

I am also on Nubeqa at the same dose you are on. I have only been on it for about 3 weeks, and so far, no side effects. We dont know yet if it is working, and I am using it a bit "off label" by using it as a monotherapy for mCRPC..... as far as I know, its only approved for non-metastatic use for some odd reason.

[wagscure259 in reply to joeguy]

Apparently they are using it @MSK for mCRPC with success in a small number of men, but never as a mono- therapy. Glad you are having no SE’s. I also had marked fatigue for first few days. Thank you for your response. Onto undetectable for you !

[joeguy in reply to wagscure259]

Now that you mention it, I have been experiencing some mild fatigue since starting Nubeqa, but it is nothing compared to the Firmagon/Eligard years. I had terrible SEs from the chemical castration drugs, which is why we are now trying anti-androgens like Nubeqa as mono-therapy. From what I can tell, the only down side to the mono-therapy is growing man boobs with painful nipples.

[Sam1962]

Can you describe what your metastatic burden was at diagnoses? You said it was heavy; what do you mean by that. You have done remarkably well so would like more details if you are willing to share them.

[wagscure259 in reply to Sam1962]

Extra capsular invasion, peri-rectal nodules, pelvic lymph nodes, retro peritoneal lymph nodes, pelvis and sacral bony lesions, multiple L4 and L5 vertebral body lesions. T8-T9 vertebral body lesions, multiple C3-C6 vertebral lesions

[Sam1962 in reply to wagscure259]

Thank you. Very helpful. You’re situation gives me hope.