He starts chemo: Now what do I expect?

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!

Cold sensitivity from the oxaliplatin varies from person to person. For me it was less than 5 days (cold food in throat, and anything on fingertips), and actually got milder over six months, although the neuropathy in my feet got worse over time.

My most unpleasant effect during Folfirinox therapy was sinus drainage, fixed by a simple Zyrtec that morning. But you might want to pop an Imodium AD beforehand, to prevent drainage from the other end.

If you can figure out a way to secure the at-home pump so it doesn't flop around while sleeping, it will definitely help with getting a better night's sleep, which reduces the overall fatigue somewhat.

Metallic taste after chemo is never fun. Plastic forks and spoons do seem to help avoid that a little bit when eating.

I am 2/3rd’s of the way done with my mFolfirinox regimen. The first one was the toughest for me. My oncologist added saline fluids on the day of chemo, on the day of pump removal and 2 days after pump removal. She also put me on Olanzapine which has been a lifesaver, helping with nausea, sleep and appetite. My neuropathy is mild as is my cold sensitivities. Make sure you ask your team for things (like saline fluids and Olanzapine) that can help with the side effects. Good luck.

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...

why the saline? i'm also wondering how this is all going to work with the meds he's on...the pharmacist said there shouldn't be any interactions but...as you and i both know, weird things can happen...

metallic tastes? oh joy...he already complains of that and its not even started...and any ideas on securing pump would be gratefully accepted

Re staying at the infusion center, of course it's up to you and him. In our case, my husband stays with me the entire time. I cannot leave the center to get food, and the only things they provide are various beverages and snack items (graham crackers, cookies, etc.). I would be awfully hungry without his help. We bring books and crossword puzzles and plan to stay the day. (As I said earlier, we're usually there 6-7 hours, by the time you account for blood workup, premeds, chemo meds and pump installation.) He goes in and out as needed to visit the hospital cafeteria or Panera (in hospital) for food and snacks. Plus, it's nice to have someone there to talk to and just be with. Edited to add: Each infusion station at our hospital is also equipped with a TV, and there are books and magazines to read. Maybe most importantly, chemo is a good time to sleep! The quiet and the drugs are conducive to sudden and lengthy naps.

Re fluids, chemo can be very dehydrating--even more so if you're dealing with vomiting and/or diarrhea. I have standing orders to get 1,000ml of fluid on pump removal day and the next day, when I get my growth factor shot (Udenyca). I have declined in recent cycles because I didn't need it, but I have used this in the past, and it can really help.

I have a bunch of "rash guards" -- skin tight lycra shirts for surfing that prevent fiberglass and surfboard wax from causing a rash on your chest, while doubling as sun protection. My solution was to just put the shirt on over the pump, and that held it in place and kept the tubes from flopping around. It's a breathable and thin enough fabric that you don't get all hot and sweaty while sleeping, and it worked for me.

Alternatives could include Ace bandages, super-small backpack worn backward (on chest), sports bras, etc.

Another alternative to ask your infusion center about is whether they have any of the new, disposable elastomeric pumps. One bonus is that you don't have to return it. But I've heard a few pros and cons about how well they work. The fluid flow is somewhat temperature-sensitive, so there may be issues with people who cover up with 8 blankets or leave the windows open during a blizzard.

Folfirinox is the current “gold standard” in first-line treatment for pancreatic cancer. The pump that is taken home does a slow infusion of 5-Fluorouricil (5-FU) over 46 hours. The first chemo agent administered after pre-meds is Oxaliplatin (brand name Eloxatin). Besides it’s own cytotoxic effects to malignant cells, it acts as a sensitizer and enhances the killing effects of Irinotecan and the 5-FU.

The side effects of Oxaliplatin are cumulative and continue to become more intense for a few months after chemo is completed. I advocated to do more than 12 cycles because I was being treated for metastatic disease and minimal residual disease is a significant concern should one achieve the goal of “No Evidence of Disease” (NED). Permanent peripheral nerve damage would have occurred taking 24 cycles if administered continuously. Even at 12 continuous cycles, neuropathy can be permanent or last a considerable amount of time. In 2012 when I began treatment, my oncologist took permanent neuropathy into consideration because of doing more aggressive chemo as a curative goal.I would get six cycles of Folfirinox over 3 months every 15th day when a new cycle began and then it was alternated with six cycles of 5-FU/Leucovorin to allow my body to recover- especially the peripheral nerves. Although I experienced neuropathy, it was not permanent although the feet took many years to fully resolve.

Since my treatment that ended in 2014 having been very successful, a technique called “cold therapy” was first used by patients with colon cancer as oxaliplatin is also used in that setting. By using chilled gel-lined gloves and booties for hands and feet worn 5-10 minutes before infusion of oxaliplatin, it constricts the capillaries and prevents concentrated drug to reach peripheral nerves of the hands/fingers, feet and toes, thus preventing damage. Holding ice chips in the mouth serves the same purpose and prevents cold sensitivity when eating cold food and drinking chilled beverages.

In my role as a patient research advocate I attend many pancreatic cancer meetings in person and via teleconference. I have a lot of contact with leading pancreatic cancer oncologists and their N.P.’s. They are becoming receptive to the benefits of cold therapy and how it provides for a better patient experience, improves quality of life and helps patients at least tolerate the standard of care 12 cycles. The anecdotal observations on its effectiveness led to a phase II trial that was very successful. A phase III trial with a very large cohort is currently in progress. Major high-volume pancreatic cancer centers have recognized the benefits of cold therapy such as MSKCC and Medical College of Wisconsin/Froedert Hospital.

Below are a number of links describing the purpose of the technique and how it is administered. It is best started at the initial treatment cycle before any neuropathic damage to nerves occurs. I wish it was available to me 11 years ago. I would have done it in a heartbeat. Neuropathy was no fun when I experienced it.

NEUROPATHY PREVENTION WHEN TAKING FOLFIRINOX/ICING

LetsWinPC.org feature story on cold therapy
https://letswinpc.org/disease-management/ice-prevent-neuropathy/

Saline keeps you from being dehydrated. I have difficulties drinking a lot of water post chemo so the saline helps with hydration which helps reduce nausea.