Preparing for Fulfurinox Chemotherapy

JuJu’s roadmap of what to expect at your first chemo infusion.

Round 1 Expectations

The night before your first round, eat good and hydrate well.

You’ll have met with your oncology team, and they’ll have explained pre-meds and post meds. It’s probably all very overwhelming, but know this: They’re doing their best at this point to predict what you’ll need. If you struggle, I promise they’ll adjust things.

To-Do List for Chemo Round 1:

Wear a V-neck shirt to make accessing your port easier.
Get your lidocaine cream globbed onto your port and covered with Press N Seal about an hour before they’re going to access your port.
Get yourself a great bag and a small rolling cooler (let those rollers do all the work!).
- In the rolling cooler, you’re going to pack varying sizes of ice packs and popsicles. If you splurged for the cold cap and special chemo gloves/socks, add them in.
- In your big bag, pack: Blanket, headphones, iPad, book, coloring book, the U-shaped travel pillow you take on the plane, eye mask, extra pair of socks, scarf/stocking cap, lip balm, lotion, hard candies, gum, water bottle.

Head to your oncology center. Take some good, deep breaths on your way, and sip on water to keep you hydrated.

When you arrive and check in, you’ll probably be called for bloodwork first, and they’ll get your port access all set up for your treatments. After your bloodwork and probably a visit with your Oncology team, you’ll get to your infusion bay. Some are private, and some are communal rooms that don’t allow you to bring a guest. If you can’t have guests, I promise the nurses will help you set up your ice packs and hand you what you need.

Get comfy in your chair with your blanket and your travel pillow. You’ll get your pre-meds then wait for the pharmacy to get your Oxaliplatin approved based on your bloodwork. Ask your nurse to fill your water bottle – NO ICE!

Here’s a look at my first round, right before getting hooked up to the first drug:

If you’ve got a friend with you, have them grab you some food, and eat it now. You might not want to eat during your two-hour Oxaliplatin infusion, because it makes things taste funny, you’ll be very cold sensitive and your mouth in general feels bizarre.

Take some deep breaths again, and visualize this going smoothly. Set a positive tone for this first round, so future rounds are easier march toward. Not one time did I dread chemo, because I had a positive first experience.

Oxaliplatin Round

When you think you’ve got about 30 min before the Oxaliplatin starts, start icing. With socks already on your feet, put an ice pack on the bottom of your feet, then cover with that extra pair of socks you packed. Lay your next two ice packs by your sides, and lay your hands on them. Or you can place them inside big mittens. Commit to NOT using your hands during the Oxaliplatin infusion. Let that ice do its job. Use a headache cap, scarves or hats to keep some ice packs on your head.

I firmly believe icing saved my hair and kept neuropathy from being bad until about round 10.

You’ll spend two full hours getting the Oxaliplatin, so do your very best to keep those hands on those ice packs. Sip lukewarm water the entire time. Chew gum or eat hard candy.

Irinotecan Round

Once the Oxaliplatin is done, try to keep icing for another 20 minutes or so, then you can be done with the ice. Remember, the nurses will help you put your ice supplies back in your cooler if you don’t have a helper with you. They’ll do a 5-minute flush before hooking you to the next drug, Irinotecan. With this one, you might actually feel some side effects. Hit that call button the minute you do. The nurses need to know.

Here’s what you might expect with the Irinotecan:

You might get a huge urge to have diarrhea – very common. Just get up, unplug your machine from the wall and walk it with you to the bathroom.
You might get weird vision/twitchy eyes. Just stay calm and close your eyes. Don’t fight it and play on your phone – you might get a headache.
You might get slurred, drunk speech. Consider it free entertainment.
You might get abdominal pain. HIT THAT CALL BUTTON. I got huge painful abdominal cramps during Round 1. I pushed the nurse button, she came running, she turned the drug off and the cramps immediately went away. That was her cue to give me atropine. If they give you atropine, you’ll take it every session from then on to prevent those side effects. For me, Irinotecan was an uncomfortable drug. I didn’t have the shooting pain any more, but a lot of abdominal discomfort, and my eyes twitched and I got headaches. So I tried to close my eyes a lot during this one.

5FU Round

Finally, after 1.5 hours, the Irinotecan will be finished, and you’ll get flushed again. Then, you’ll get hooked up to your 5FU pump to take home with you. It comes in a couple styles . I was on the battery pack version. I wore mine as a fanny pack, and I got used to sleeping with it beside me. It’s only for two nights per cycle, so it’s very bearable, and the side effects are maybe a tummy gurgling sensation here and there. You’ll get it unhooked on the third day, and I recommend ASKING FOR A BAG OF FLUIDS. Yes, it makes it a longer appointment .but it’s worth it to get those extra fluids. You will also hopefully get the white blood cell shot then to help boost those numbers so you can continue chemo without being denied for bloodwork reasons.

Take-Home Tips

If this was your first round of chemo, your body has just been through a LOT. So have a vomit bag ready for your trip home. I unfortunately was very very sick after my first round. That’s where the oncology team adjustments come in. Use the app or a call to tell them what you’re dealing with, and they’ll tweak your steroids, anti-nausea meds, etc. Their small tweaks saved the day quickly for me. I also did acupuncture for the nausea (and I continued to do acupuncture to combat any lingering nausea, neuropathy, fatigue and sleep problems).

Chemo rounds will get easier because they’ll get familiar. It’s a very long day for us FOLFIRINOX folks, but we GET to do this, right?

Side effects will come and go in the two weeks between treatments, some of which I could predict, and some I couldn’t. Some side effects I only experienced once.

Vomiting – only Round 1. Fixed by oncology team and acupuncture.
Constipation/diarrhea – a fun wild ride for 12 infusions – always constipated post chemo day because of all the steroids and anti-nausea.
Metallic taste – only happened one round early on.
Everything tastes salty.
Jaw spasms when you first bite down on food (ouch!) – lasted entire chemo journey.
Mouth sores – were bad through Round 3-4 and then subsided to manageable. Eventually felt like a scratchy, slightly swollen tongue. Start rinsing your mouth several times a day with baking soda and salt water from Day 1. It can help prevent mouth sores before they become painful. If you get mouth sores, ask for help immediately. They’ll prescribe Magic Mouthwash.
Hair loss – starts at week 3, but don’t grab the clippers. Your hair will probably just thin, and it’s better in the long run to just manage the thin version of your hair than shave it.
Cold sensitivity – always during chemo week. You probably can’t eat cold things for about 5 days. Feels like needles in your throat.
Fire hands – occurred during 2 rounds only early on. Very painful! Only fix I found was ice packs on my hands until the pain went away. Avoid fire hands by avoiding really hot water.
Headaches – bad during two different rounds.
Burps
Swelling – face and stomach.
Acid reflux
Neuropathy – Sensitive hands entire journey. Always use gloves when reaching into the fridge/freezer. Finally got bad for me and started involving my feet during Round 10 when I should have stopped Oxaliplatin per doctor’s recommendations, but I begged him to keep me on it at 75%. We stopped Oxaliplatin for Rounds 11 and 12.
Brain fog – started to notice around Round 6 and got worse. Slowly resolves post chemo.
Pancreatitis later in chemo journey. Discovered I needed to take Creon with food containing any fat.
Whipple attacks – later in journey. Very painful! I continue to get maybe one a month. Easy fix: Rub CBD oil or any sort of muscle relaxer cream on the painful area (such as BioFreeze).
Loss of appetite off and on.
Immunocompromised entire journey. Stayed away from crowds, hospitals, sick people, etc.
Fatigue – was very manageable and brief until about Round 7-8 when it got pretty severe. Always worse the week of chemo.
Trouble sleeping/weird sleep habits.
Irritability – thank you, steroids.
Yeast infections – started about halfway through.
I was always asked by oncology if I was experiencing rash or shortness of breath. Apparently those can be common, too.

Ongoing Advice During Chemo

I’ll repeat advice from above, because it’s that important: Set a positive tone for your first chemo treatment, so you won’t dread future appointments.
Tell your oncology team everything. Nothing is “complaining.” They have medications, dose adjustments, and supportive therapies for almost every side effect. You don’t have to suffer through treatment just because you think it’s normal.
Always try to eat and drink well after chemo.
Rest when your body tells you. You can’t fight this kind of fatigue.
Staying hydrated helps more than you realize. It can improve fatigue, constipation, headaches, and help your kidneys process chemotherapy.
Do your best to guess your constipation/diarrhea needs. Always have the right meds in your cabinet for BOTH.
Take your temperature if you feel unwell. A fever during chemotherapy can be an emergency. Call your oncology team right away if they told you to report temperatures over a certain level (many use 100.4°F/38°C).
Stay away from crowds to avoid germs. Remember that you’re immunocompromised, so be careful about being around school-aged children and places sick people go (pharmacies, grocery stores). I pretended it was Covid for six months. It got lonely, but I avoided getting sick and missing chemo.
Keep on you at all times:
- Creon (or other enzyme)
- Immodium
- Nausea med
- Vomit bags