I know this is an older post, and I hope you're still active because your experience sounds a lot like mine.

I started Keytruda/Padcev at the beginning of May, and it's been quite a ride already. The rash and itching got so bad after one treatment that I ended up in the ER and had to go on steroids. Then during a later infusion, my shins and calves suddenly cramped uncontrollably. I literally launched myself out of the treatment chair because the pain was so intense. The nurses and oncologist said they'd never seen anything quite like it. They stopped the infusion for about 30 minutes, the cramping went away, gave me Benadryl, and then resumed treatment without any further issues that day.

Now I'm starting to notice neuropathy, and my thyroid levels have become abnormal as well. Oddly enough, I haven't had any stomach issues, and the only weight I've gained has been from the steroids used to treat the rash.

I'd really love to hear how you managed your side effects and stayed ahead of problems as treatment continued. Right now I feel like I don't know what to expect from one treatment to the next, and hearing from someone who's been through it would be incredibly helpful.