I've had my pouch for 33 years and was recently diagnosed with breast cancer. I just started kadcyla infusions after chemo and surgery. The chemo (abraxane) actually made my pouch work better. The one infusion of kadcyla gave me horrible abdominal pains and I'm still trying to get myself to where I can empty my pouch normally. I either have diarrhea or or I'm stopped up. I'll be on this medication for almost a year so I would appreciate any advance from someone who has gone through this. When I asked for help with how to manage this the nurses told me that I should come in because I might have diverticulitis. Clearly they don't understand the pouch.
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One thing to try (if you aren’t already) would be psyllium. In my experience it tends to even out the stool consistency, which might solve or improve your diarrhea/stopped up oscillations.
I use psyllium and I actually halved my dose because I think it was making things worse. Thanks for your suggestion but I'm actually looking for information from people who have been on kadcyla and have a pouch.