Hang in there! It sounds overwhelming, and frankly it can be, but you and he can do this. Based on your post, it sounds like what he's getting is modified Folfirinox, which includes irinotecan, leucovorin, oxaliplatin and fluorouracil (the wonderfully nicknamed FU!). The fluorouracil is what goes home in the pump. Yes, the pump runs for 46 hours; it'll be programmed to shut off automatically, and then the chemo nurse can remove the pump and the port connection. I don't remove my own pump and port connection, so I don't know anything about that. You're right that the oxaliplatin is what can cause cold neuropathy. It will show up in hands, feet and the back of the throat. It affects everyone differently, but in general it has a cumulative effect. It'll start out not being so bad and get gradually worse. In my case, I had a 6-week layoff from chemo recently (long story) during which my cold neuropathy basically resolved itself. I had chemo last Monday, and the neuropathy showed up a little but, but has since receded.
Re this first chemo, watch out for fatigue, nausea/vomiting, and diarrhea. Mostly, we just plan to hang around the house for a few days. Is he getting the full 100% dose or a reduced dose? I got 80% of normal for my first, and I was sick for two weeks. I now get 60% of normal dose. Anyway, you will want to be sure you have all your anti-nausea and anti-diarrhea meds in hand. We keep adult pullups in the house for me; I don't always wear them, but they can be very helpful, as can bed liners and such. Appetite may be tricky. He may not be hungry, and he may want or reject certain foods. I immediately went starchy/sweet, and I have jags where I crave the same thing over and over (pasta, hamburger, that sort of thing). My poor husband ran back and forth to the grocery for all sorts of weird foods in an attempt to appease me! This has settled down somewhat, fortunately.
Forgot to add: Your day at the infusion center will be a long one. We're typically there 6-7 hours. Plan on lunch and snacks and a looooong day.
Does any of that help? Hope all goes well Thursday!
that helps a LOT...i'm debating on whether to stay at the infusion center for at the least the first one with him...idk that i'm not more nervous than him but thats prob because his mood swings have been awful and i'm hoping this doesn't make it worse...i'll be honest...