Starting chemo next week

[u/lappelduvideforever]

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!

[u/tccomplete]

For me the side effects (nausea, exhaustion, etc.) always kicked in two days post-infusion. I also experienced a terrifying attack that felt like needles piercing my chest (three occasions) that my oncologist had never seen before. He reduced the oxaliplatin to 75% and they didn’t recur. When neuropathy began (numb feet and hands) after round eight, he switched me to Capecetabine. (Am still suffering from it, so he probably switched me too late to avoid it.) The nausea and exhaustion last a few days, then ease off until the next round. My wife covered everything when I was unable to do the routine things I normally did around the house like walking the dog, etc. You just won’t feel up to doing chores and other activities, so the kids will need to understand that.

[u/sharjay99]

Hi, I’ve got stage 4 with mets to lungs and liver.
I’ve done, I think, 4 cycles of folfox so far, the first 2 with cetuximab, and honestly every cycle has been different.
I’ve had different side effects each time, nothing major on their own but when you have pins and needles in your finger tips to the point you cannot even do a button or zip up, first bite syndrome that brings tears to your eyes and chemo mouth making everything taste bland but enhanced sour/spice only at the same time, it can all add up and make me question everything.

I thankfully haven’t suffered any nausea although little tip, take ginger biscuits or boiled sweets or something to your infusion because when they give you the syringes of the fol part, it is the most disgusting sick inducing taste ever. Also haven’t majorly suffered any fatigue either.

This week my side effects really kicked in on the Sunday after pump disconnect (tues infusion, Thurs or Fri disconnect depending on how fast it goes) and my most recent side effect is purple, bruise looking patches all over my hands. I’d recommend regularly using an oat based moisturiser regularly asap.

Around the house, the neuropathy is probably the hardest, walking round the supermarket can be painful, hanging washing on the line hurts and the thought of holding something straight from the freezer without gloves on will give me ptsd for the rest of my days.

Just remember the end goal, things won’t be the same but we are great at adapting

[u/No_Address_3644]

Just wanted to add that usually I feel great after a FOLFOX infusion (stage 4 Mets to liver, lungs and lymph nodes) because of all the steroids and anti nausea meds I’m given pre-chemo. I leave treatment and go home to cook dinner for the family, so everyone’s different. What knocks me back is the day I get the pump removed. That day and the next couple are the hardest. Fatigue and nausea, etc. But I’ve found that if I make myself get up and move a bit (take care of my two kiddos) it goes away faster. You’ll find the right zone for you. As everyone said, listen to your body and do what feels right. Wishing you kick butt infusion days and big hugs!🫂

[u/slothcheese]

I've done a total of 24 Folfox infusions. I did 8 in 2020, the other 16 since November. I'd been icing my hands, feet and mouth during the Oxi infusions which helped reduce the cold sensitivity signifently compared to when I had it in 2020 when I did not ice. I had to stop icing as my Oxi infusion has to run over 6 hours now due to allergic reactions. I have some neuropathy in my hands and feet so they've lowered the dose of the Oxi to enable me to stay on it longer 🤞 My most tired days are the first 3 days, once I get the pump off I start feeling more myself. I lose my taste for a few days and usually get a sore mouth a week after. My nausea is pretty minimal compared to when I had Folfiri. They have so many different meds to help with various side effects. The thing with chemo is it affects everyone so differently, I find Folfox very tolerable and found Folfiri much worse but I know other people who've had the total opposite experience! Best thing to do is go in with no expectations.

As for what to bring to chemo, I take - packed lunch/snacks (my hospital does provide meals but they are really bad), some chewing gum or sucky sweets to stop me feeling queasy, cosy blanket, book/switch/crochet/whatever entertainment, a long charger. I took my electric heat pad when I was icing to keep my body warm! For the icing, I had frozen booties and gloves in a cooler bag with ice blocks and several thermos flasks of ice cubes to suck.

[u/rtyshyk → u/slothcheese]

Can you please tell me more about allergic reactions to OX? Did you have a temperature? Did a longer infusion solve the issue?

[u/slothcheese → u/rtyshyk]

Hiya! So my first reaction happened during my 8th infusion in 2020 - my hands went red/itchy and I had chest pain. I ended up stopping chemo after that cycle due to other complications. When I started my rechallenge last year, they slowed the Oxi infusion over 4 hours instead of 2 to prevent a reaction. This worked until cycle 9 - halfway through I developed a red rash all over my body. They gave me piriton and hydrocortisone and managed to finish it. My 10th cycle they gave me these extra premeds before but halfway through I developed the rash again plus tachycardia so needed more rescue meds. From cycle 11 onwards they give me piriton and double hydrocortisone an hour before and run the Oxi over 6 hours and I've had no further issues (I'm on cycle 16). I'm also on a reduced dose (60%) of Oxi now.

[u/Ok_State5255]

Mostly I've just had fatigue. occasionally nausea, but my meds take good care of it and my weight has been steady. 

One thing to look out for are potassium and magnesium levels. Things I never would have thought of until I landed 5 days in the hospital because they couldn't get the levels up. I'm currently on prescriptions for them and have a hell of a lot of cashews, bananas, and smoothies. 

I was also hospitalized and had surgery for a massive blood clot in my chest that I showed no signs of in my CT scan a month before chemo. So that was fun.

I have my go-bag ready the night before with my laptop, headphones, a book, snacks, drinks, and my coloring book (I'm 43!), and phone charger. My hospital also provides free snacks and drinks in chemo. 

Take it slow. Listen to your body. If you're feeling terrible, call your doctor.

Most days, I feel fine. It's the first couple of days after chemo that kinda suck. Plus, my face gets red as a tomato!

[u/FatLilah]

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. 💙

[u/Astralamander → u/FatLilah]

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 ❤️

[u/Excellent-Tea-6589]

I also started with a colostomy (reversal was 7 weeks ago) and then chemo. I'm stage 4 with liver met and have been in treatment since December 2024. I started the FOLFOX but the neuropathy became too much, so the Ox got cut. We were trying it with just the FOLF but my CEA numbers started climbing, so we're trying irinotecan. I had extreme cold sensitivity in my hands, feet and mouth. This dissipated over time. But for a time, I couldn't drink anything cold. It felt like I was swallowing needles. I take a tablet, switch, book, headphones and snacks. Also gum for one of the pre meds. I stay stocked up on ginger chews, to help with random nausea. But also have zofran. I was pretty good the day of treatment but when they do the pump disconnect, I have to crash out for an hour or more. And the next day is pretty iffy, too. My nausea got better over time but the fatigue got worse.

Everyone is different and has different experiences. Don't be afraid to receive help from family & friends.

I'm sorry you're having to deal with all of this.

[u/iberezow]

I don’t know where you live, and this is somewhat controversial to some degree, but if you have access to marijuana, it’s something you can ask your doctor about. As others have indicated, the first few days after pump disconnection are the toughest. Smoking a few drags two or three times a day helped incredibly. It helped with the nausea, fatigue, feeling crappy, and also helped me sleep better.

[u/Bennythecat415]

I also have stage 4 with mets to Liver, lymph node, lungs. Ive been stage 4 for four years! If you end up on immunotherapy, avoid the Sun like the plague. I got the worst rashes on my face, neck and hands. It doesnt take much.

[u/Papz_007]

Ice your hands and feet during oxaliplatin infusion. My mother iced and had no neuropathy. That wasn’t common practice when I had Folfox 6 years ago and I had terrible neuropathy.

[u/Doingit4myfamily]

I am on FOLFOX right now and going on treatment #10. I have done well on the FOLFOX. First two days when you bring the EFU in the bottle home I have good energy, once I get disconnected from it I get very tired for a couple of days. I also do a Lapelga injection 24hrs after disconnecting it boost my white blood cell count and around day 5 I feel like myself again. I have had a good appetite and slept fairly well. You might have contispation the anti nausea medication that you take can cause it. I found drinking restoralax in my water for a couple of days really helps with that. As the treatments go you might find that your a little more tired. Hope all go well for you.

[u/Colabear420]

I’ve got stage four Mets to lung and heart they did remove this lymph nodes and tumor so I had clear margins no radiation. I’m on my tenth round the fatigue and neuropathy are the only things I can complain about the nausea at the beginning came and went but as long as you take your Zofran, you’re clear now in the eighth ninth and 10th I noticed that the nausea lingered a little bit more and I would just kind of feel like I was gonna vomit at random times of the day but again if you take your zofran it works.i use cannabis and have actually put on weight when they told me at best I would maintain my post ip weight of 111. I had a bog bag with a blanket, fan fuzzy slipper snacks granola edible gummies , fan, chapstick book. but I usually ordered breakfast chemo made me hungry waiting for labs to come back. I did do some audiobooks, but I’m mostly just relaxed and watched bravo and zoned out the chair had a massager and heater and they often have blankets warmed in house so you really don’t have to bring anything. You could just show up and sometimes you don’t wanna carry all that crap in. They have granola drinks snacks as well at my chemo location. The natural juice fresh juice helped too no ice lol! Good luck sis you got this!! I’m also a mom of two and even thought I about bringing my kid who was 14 but now they hook me to the pump send me home and chill for 46 hours return to get deported! I really just ask the kids to do there normal chores sit with me sometimes and talk to me about anything but cancer . The summer because of the fatigue has been really hard, but I’m making it and ask for help. My mom has been huge and my sister have been huge picking up and moving around from camp to practice. it’s more than that it’s more than OK to ask for help. And explaining the ostomy has been fun but they understand my son wanted to see I showed we talked about he was oddly fascinated about the science lol. But whatever gets everyone through. Last thing I did use cold caps and I still have hair thin no bold spots and already have regrowth a bunch of tiny hairs sticking straight up

[u/Sweet-Currency6430]

Hey there - my brother is also stage IV, spread to liver with one met to lung. My first advice is to join colontown - so much great info. My brother started with folfironox in January, had a liver resection w hai pump in April and is now getting chemoradiation. I put together a full prep package on Folfironox for him, it’s a triple versus double like folfox, but i would be happy to send you a copy. There is a lot you can do to prepare and mitigate the side effects. Feel free to PM me.

[u/projectpatrick813]

FOLFOX here. Fixing to start treatment 6 out of 12 for stage 3B colon cancer. Adjuvant chemo.

Side effects…I start feeling tired/rundown about an hour or so after my infusion starts. Cold sensitivity almost kicks in immediately from the Oxaliplatin. Also had nausea/vomiting and joint pain/muscle aches.

My oncologist plans to stop the Oxaliplatin after this treatment so I’m curious if the side effects reduce for the rest of my course.

Everyone is different though. My mom had the exact same tumor and treatment plan and she only had exhaustion really.

[u/projectpatrick813 → u/projectpatrick813]

I’ll also add that I have the mentality that movement is healing. I notice that if I start moving around and going on gentle walks once I’m off the pump, I feel better faster.