Taken off Xtandi: could not sleep since starting it Dec22. Also underarm and perineum where shredding. Could it be Pembro’s adverse events that happen for life? It was stopped in Sept.
Also on Xoladex and Xgeva and Prednisone.
Just had both COVID-19 vaccines (Pfizer).
Getting hard to count all the bone mets now. No more nodes!
Had chemo and ADT at the beginning Aug2018
One of the many adverse side effects I had with full dose Xtandi was full body exfoliation. I looked like Pig Pen on comic strip. Right down to no fingerprints. 1/2 dose worked.
How long were you on the drug before you started having side effects, and before the dose was cut to 1/2?
About 3 mo. until cumulative side effects started to make me an invalid.
OMG! So sorry to hear that.
I will be starting a new trial with a triple therapy of Ac225 PSMA (one time) + Keytruda (6 week infusions) + Xtandi (daily). The side effects you experienced with Keytruda and Xtandi are concerning to me. How many treatments, and how long, did you have? We're they used as part of a trial? Dosage used?
Keytruda went well for more than a year. A little nausea and diarrhea but not to complain about. Stopped because more mets appeared in ribs and skull. Also I got very sore ankles and rash on my lower legs and wrists. ( I think I overdid my exercising that week) also eye pain and blepharitis. Yes this was a trial. But the Xtandi was started 3 months after the trial ended. Almost right away I couldn’t sleep at night (160 mg) for 4 months. Doc lowered dosage to 120 mg but it made no difference. Oh the Pembro was 200mg every 3 wks.Hoping you get the magic bullet for this mystery disease!
My husband's experience with Xtandi
Xtandi/ UTI with Foley/ low hemoglobin 
Xtandi exhaustion even with some exercise
Xtandi and cardio problems
Xtandi
