Hi,
Some of you will know I reply to our new members when they have questions relating to a Neo Bladder. I had my Neo in June 2020 and am a big advocate still as my life is as near normal as pre-op as I could ever have wished.
I’ve been having CT scans every 6 months and all ok, until August 2022 results when enlarged lymph nodes in my Pelvis were seen.
More tests and a referral to oncologist confirmed cancer back.
So not great news, although Cancer has not made it to any organ or bones as it was caught early which is why we have these regular scans thank goodness.
Anyway, reasons for this post.
1. Due to covid being at its height when I started treatment in June 2020, one option for me was discounted - Chemo before RC, to mop up any cells external to bladder. Speed was of the essence too. We will never know if that would have prevented my current situation, but for any newbies with decisions to make now, maybe also consider Chemo before (or after) RC if circumstances allow. Even though that option was discounted for me, I was also told that it only helps 1 in 20 people. But someone has to be the 1 of course!
2. I have managed to get on a clinical trial that uses two immunity/chemo drugs that go by the trade names of Padcev and Keytruda, and started treatment last week, so Early days re: side effects or results.
Padcev (Enfortumab vedotin) is the study drug and I can find very little information other than good old google, and the USA Inspire forum.
So a shot in the dark, but anyone have any experience with these drugs? Especially Padcev.
thanks
Chasam
