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.

@quahog Hope you're feeling better! How often did the blood in the urine recur? Was it every other day or once a week or were the intervals longer?

@mtceegee once it started it was pretty consistent. Maybe once or twice a day but significant every time. I did go for about a week without it but I was taking an antibiotics while they figured out if it was something other than a CTI. Clots and lots of blood most of the time, not just light coloration. They diagnose a NMIBC and performed TURBT with in three weeks of the beginning of the symptoms

Good morning Meadows,
I'm a male, so the 1st part of this response won't refer to your situation. Before starting BCG treatment, I had "Green Light Surgery" to reduce the size of my enlarged prostate. This was causing me real problems with peeing. There was no problem with my prostate - just too large, which is a common male problem! During this operation my urologist found a tumor in my bladder. She removed it and recommended that I begin a BCG series of treatments as my type of cancer was quite aggressive. I researched the treatment and decided to go with it! Previously, I had ignored a tick bite very foolishly, and ended up with 3 tick diseases - Lyme, anaplasmosis, and babesiosis! Due to my age of 82 at the time, this almost cost me my life!! My urologist is great - I follow her directions totally, and do what she says! The BCG treatments are no picnic, but they are a heck of a lot better than the alternative! My wonderful wife (of 63 years) and I just retired from a small manufacturing business we operated for 30 years and we want to spend time we never had to "smell the roses".
Whatever your decision, please take one day at a time, and GOOD LUCK.
85yosk8r

Goss hematuria. I work at same hospital as my urologist so treatment was fast. I referred myself, had an office appointment the next day, was in surgery the following Monday.