1. < Pancreatic Cancer

He starts chemo: Now what do I expect?

Posted by MommaCandy @mommacandy, Aug 28, 2023

first a thank you to those who responded to me previously...it helped to calm me down a lot before meeting with the surgeon.. we've now met with oncologist as well and he has gotten a power port put in....

he starts his chemo on Thurs and will be going home with a pump for 48 hours...is this normal??? he will be given a mixture of 3 drugs, oxaliplatin, irinotecan and fluorouracil...from what i understand, the first one is one that will make him super sensitive to cold and takes about 3 hours to infuse then about 2 hours for the second one, and the last one is the one that he will be on the pump for... We will be going back to UVA for the initial pump removal and at that time they will teach us how to remove it to bring back in two weeks for the next cycle..
Is it normal for me to be feeling overwhelmed? i'm a bit nervous about this whole pump thing, they've given us handouts etc about the chemo drugs but as they say, it affects every person differently.. 'one of the biggest issues i think with him will be giving up ice cream for 5 days...apparently anything cold is a BIG no no with the first drug for the first 5 days after infusion...
i guess my biggest thing is what kinds of things do i expect or should be watching for with this first chemo????

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MommaCandy | @mommacandy | Aug 29, 2023
In reply to @markymarkfl "Cold sensitivity from the oxaliplatin varies from person to person. For me it was less than..." + (show)
@markymarkfl

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.

Jump to this post

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

REPLY
2 replies
MommaCandy | @mommacandy | Aug 29, 2023
In reply to @mimimmx "I am 2/3rd’s of the way done with my mFolfirinox regimen. The first one was the..." + (show)
@mimimmx

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.

Jump to this post

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...

REPLY
1 reply
MommaCandy | @mommacandy | Aug 29, 2023
In reply to @ncteacher "Hang in there! It sounds overwhelming, and frankly it can be, but you and he can..." + (show)
@ncteacher

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!

Jump to this post

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...

REPLY
2 replies
mimimmx | @mimimmx | Aug 29, 2023

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.

REPLY
1 reply
markymarkfl | @markymarkfl | Aug 28, 2023

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.

REPLY
1 reply
ncteacher | @ncteacher | Aug 28, 2023

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!

REPLY
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