What were your initial bladder cancer symptoms?

Thank you all for your insights and input! I would like to hear from anyone who is on Padcev and how they are doing with it. My oncologist seems to think I will be on it for the rest of my life, if I can tolerate it. My cancer was diagnosed as stage IV with mets to surrounding lymph nodes but last CT showed benign-looking lymph nodes (yay!). Further surgery on my bladder (i.e., neobladder) does not appear to be an option at this stage.

Many patients do a combination treatment of pembrolizumab and EV. Once you are in remission (complete response) they switch to pembrolizumab only for up to two years as maintenance therapy. This is often coupled with ctdna monitoring (signatera) and three month imaging. Have you asked your oncologist?

This is an interesting blog by a patient with similar disease to you.
https://www.treffertinnovations.com/blog.html

Yes, that is the only immunotherapy for me.

I had pain in the pelvic area and blood in my urine,

Blood in urine, lots of blood and clots. Was intermittent at first. Had to wait two weeks for cystoscopy and TURBT. No pain or other discomfort so gross hematuria was the only symptom. I’m male.