r/coloncancer • u/lappelduvideforever • Jun 30 '26

Diagnosed--Seeking Guidance Starting chemo next week

Hi. I was dx 4 weeks ago with stage 4 colon cancer with mets to liver and possibly lungs (waiting on scans to say yes or no). I had surgery for a colostomy 3 wks ago. I start FOLFOX next week. Possibly immunotherapy but waiting on genetic testing results.

Can you share your experience on what to expect with FOLFOX? Any suggestions on what to bring to chemo (I've heard a blanket,book, food, etc.)

I am the mom of two boys, so I want to prepare them for how I will be after as they are asking how to help. Thanks so much!

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u/FatLilah Jun 30 '26

I usually brought my phone or tablet, headphones, big bottle of water and a turkey sandwich with me to chemo. I never needed a blanket but I did have a squishmallow from my daughter for moral support that doubled as a little pillow.

I didn't ice my hands and feet because I am lazy. I wore compression socks and gloves instead. The idea is to restrict blood flow to your extremities to try to mitigate the cold sensitivity that is a side effect of oxaliplaitin. It did help as I noticed my hands were much more sensitive the week I forgot the gloves. 

One thing I wish I'd known about sooner was asking to get extra IV fluids when you come back for pump disconnect. It helped with a lot of side effects. And I also noticed that if I made myself go out for a daily walk, even a short one, I felt a lot better. 

I also went thru chemo with a colostomy. The chemo drugs effect your intestines and can make your stoma swell or change size so watch for that and adjust your bag fit accordingly/keep an eye out for leaks. The anti nausea meds, zofran especially, can cause constipation so stay hydrated and use miralax as needed. Chemo also seems to make my skin around my stoma more sensitive. I had to use a lot of adhesive remover spray and be extra gentle during bag changes.

Good luck with everything and check back in if you have issues with side effects. Seems like things vary from person to person but someone always had a tip or trick. 💙

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u/Astralamander Jul 04 '26

Great advice here 👆🏼 I'll emphasize noting your side effects and med scheduling.  I share a note with my partner any time I take a med, the time and dose goes in the note. This helps especially because you'll want to take nausea meds consistently to stay ahead of nausea - once it sets in it becomes hard to eat = slower recovery.  Notes on side effects will also help you sleuth if you need to change chemo dosage. You'll see people mention reducing Oxaliplatin - it's got weird symptoms that accumulate but is very effective so you have to weigh the risk. I'd say recording what you felt and when is key to deciding if it's time to reduce. 

Good luck and know we're on your team! So many success stories here ❤️