FOLFOX: My First Line of Chemotherapy

FOLFOX is an acronym for a chemo regiment that is typically prescribed to individuals with advanced Colorectal Cancer (staged III to IV), as a first line of “deferment” of the disease. In clinical terms, we want these results; stable is when there is no spreading or growth on existing tumors, regression (or simply a smile on your oncologist’s face) means that your cancer has shrunk by some measurable way.

Folinic acid (leucovorin) “FOL”, Fluorouracil (5-FU) “F”, and Oxaliplatin (Eloxatin) “OX” are the drugs involved with this first chemotherapy regimen.

Folinic Acid (aka Leucovorin) is actually not a traditional chemo drug, in fact, it’s a solution that helps boost the effects of the Fluorouracil. This is typically given alongside a more potent drug called Oxaliplatin. We’ll get to Oxyaliplatin in a minute – this is one chemotherapy that you need to know! Leucovorin and Oxyaliplatin are typically given over a 90 minute period, via your chest port or vein. Leucovorin works by shielding your healthy cells from the harmful effects of chemotherapy drugs, while synergistically allowing a longer-lasting chemo drug, 5-FU, to invade tumor cells.

Jonny showing off his newly accessed Chemo Power Port (September 2018) during a FOLFOX infusion.

During this infusion, you most likely will not feel any immediate effects, although if you do – a rash, rising fever, or even chest pains – make sure your nurse is within walking distance. I remember my nurse giving me a hotel bell within finger distance to notify them if I started to feel any immediate side effects. As frustrating as this sounds, doctors, and nurses do not have complete confidence that chemotherapy agents, like FOLFOX, will be tolerated by your body until the actual infusion. Fortunately, I had no immediate effects, just my adrenaline pumping through my veins, waiting nervously. Typically your first infusion will take a few hours for any noticeable side effects; nausea, vomiting, and just the overwhelming feeling of shit. Remember to always record your side effects! I was so confident that I would remember each symptom but as it turns out a recently diagnosed 30-something-year-old has other things to do.
Mistake #1 – I had no idea how much it would help me understand how toxic my body was getting.

Oxaliplatin (Eloxatin), specifically, will cause extreme sensitivity to cold. The reason for this is due to the chemistry of this drug. Platinum-based infusions can be extremely effective against cancer, however, those benefits can come at a cost. The primary reason why this occurs is due to the drug’s target – inhibition of DNA development; putting at risk your healthy cells (along with cancer cells). Neuropathy develops as a result which can be temporary or permanent depending on that specific individual. This popular side effect has no predicted timeline, in fact, my experience was quite different from those who received this – both in young and older adults. Through my maximum dosage of Oxaliplatin the ONE huge side effect was the increased nerve numbness and pain I felt when around or touching anything at a fridge temperature or below (<~40F). 

Jonny playing hockey with his soccer club members at a joint event with the local ice hockey team (November 2018)

As I received my first Oxaliplatin infusion I really wasn’t paying attention in the infusion room. To be honest, I completely zoned out during that 90 minute period, talking with my mom who came with me for the first treatment. After leaving the cancer center we went off to Ruby Tuesdays at the nearby mall. Sitting down, without even blinking an eye, we started to sip our ice water that had just come out. My throat felt weird…and then it clicked…I just had Oxaliplatin and my doctor’s warnings rang out in my ear “You’ll feel extreme sensitivity to…”. I nearly spat out my water when I felt this weird sensation in the back of my throat. It wasn’t pain, more like an odd zing. Being the neurotic person I am, I started to sweat and panic, almost like I accidentally ate rat poison (a similar by-product to what was flowing in my veins). Even though I was in no immediate pain, looking back now it was like my body foreshadowing what was coming down the pipeline. 

After the third dose, I began to feel broad sensitivity that first started on my fingertips, which then traveled down to my throat. Eventually, that sensitivity reached my nose and my toes! At first, the sensitivity went away a few days after the infusion but eventually dragged on until the very next infusion…two weeks later! You’re probably thinking that summer would be the optimal time to start Oxaliplatin since the season brings temperatures well above the 40F mark. I mean yeah. It sounds great. Warm weather with the occasional storm, giving my body a great buffer. But wait, I forgot that I still need to cool down on those very hot days, it’s not like Oxtalipatium cooled down my body. Air conditioning and swimming in the pool challenged my mindset, my skin crawled with a slight shock from drying off after the shower and pool. It took me months to get used to this feeling but in all honesty, it absolutely sucked.

Missing those ice cream days

To help mitigate this intense side effect I found that hydration is the KEY. We often take for granted the amount of water our healthy body needs per day. When you are using chemotherapy you need to considerably increase the amount of water you absorb each day. Additionally, there are other things you can invest in to help your body.  After much research I chose bioavailable B-12 supplements, eating leafy greens, and kombucha to support my body’s absorption of this crucial vitamin. The reason for these specific items in their raw potential for high amounts of available B-12. Seeking out whole foods or whole food-derived vitamins will help, compared to just taking your neighborhood pharmacy’s generic B-12 supplement. While yes it will cost, on average, more money the potential benefits definitely outweighed the costs. Another unique addition I added to my routine was Acupuncture. There are plenty of scientific and first-hand testimonials that support the use of this alternative medicine with chemotherapy. Fortunately my harsh side effects, like neuropathy, did not spike as high as others I’ve talked with. I even had my neuropathy completely resolved months later, after finishing Oxaliplatin.  

Dark humor is Jonny’s way of distracting his mind from cancer. By using laughter to normalize and destigmatize his condition. He thrived even during his treatments (December 2018)

One additional mitigation strategy that you might want to consider is putting yourself on ice, quite literally. There have been many recent studies on how to lessen the neuropathy side effect by simply icing your hands, feet, and even in your mouth. Sounds cooky for sure but during my infusions, I found this common from patients, with some nurses even encouraging it. Talking with a few patients who did this, they testified to its effectiveness.  

Now moving on to the last drug on this cocktail, Fluorouracil. Also known as 5-FU for short, Fluorouracil is actually not fully infused at your local cancer center; in fact, think of 5-FU as a take-home homework assignment. While this slow drip chemo may vary in size or container, everyone will receive a dose that is scheduled to end in around 48 hours. Don’t sweat this, as bad as this sounds, your body can actually adapt to wearing a chemo pump quite quickly. 

Jonny’s chemo pump, nearly completing his 48 hour 5-FU infusion at home (September 2018)

Your nurse or oncologist will begin by “flushing” your vein or port tubing with saline to make sure traces of the previous drugs are clear of your line(s). Next, they will give you a “bolus”, which is simply a small push of 5-FU through your post to help jumpstart the process. Then they will add the pump container that will slowly drip the drug through your vein or port access. I’ve seen this pump design vary from a large capsule or a ball-like structure that slowly deflates over time to a larger portable machine-like structure that my buddy Diego is showing off (see below). The pump is still connected to your port via a line that can vary in length. Mine always seemed to drag down, get caught on everything unless it was tucked into my pocket or bag. 

Jonny’s friend Diego posing with his chemo pump (and cat, Harvey).

Most treatment centers provide you with a small bag to fit those pumps into, along with space to tuck in the lines to prevent any entanglement. You can also buy chemo bags on Amazon, custom-fit ones on Etsy, or attempt your own homemade one! Here’s one example that my buddy Wes gifted me once he reached remission (see photo). I call it the chemo monster…a short pun off one of my favorite sesame street characters growing up. The outside felt plush and was extremely comfortable! 

Make sure you have the nurse wrap some medical tape around the connecting lines to prevent and track any leaks that could occur. Also, and this is an important reminder, make sure all clamps are open so that the drug is running through into your port. There should be at least two or more and they often get mistakenly clamped closed. This never happened to me but I always triple-checked. 

Now you are probably thinking, “How the hell do I sleep with the chemo pump, when it’s connected to me by needle?!”. Here is the funny thing, you strangely get used to it. During my first infusion, after my Ruby Tuesday’s dinner with my mom, I took a nap and really had no qualms with the device. The only thing that bothered me was the copious amount of wires that would dangle around me. I’m a tosser when sleeping so I would occasionally wake up and nervously check my connections to make sure there were no leaks or kinks in the line. The key to preventing unwanted connection problems is tucking your wires into your chemo pump bag, making sure there is enough slack to allow you to rest comfortably.  Give yourself a foot or so of tubing, I usually put my bag under an adjacent pillow on my bed.

Jonny shows off his pump while doing yoga (September 2018)

I often remember waking up the next morning, halfway into my chemo bag regiment, feeling hungover and tired. You can see how especially cruel this can be when you also have the neuropathy effects from Oxyaloplaium too. Before you know it, your bag will be empty and you’ll be on a drive back to your cancer center for a disconnect. Pumps do tend to empty out faster for those who are skinnier. Remember to stay hydrated and stay rested. This is your excuse for sleeping in and getting pampered by your partner, family, or friends. You will need to lean on others for help during your treatments, there is no way around it. Believe me, I tried that and man do I regret starting late. I ran myself into the ground by driving to my treatment center, driving back to my apartment (hooked up and all), attempting to cook myself food, take care of my cats, move around, work (virtually), do chores, and then driving back to get unhooked. You can see how exhausting that can be! I did this to make myself look strong and prove that I am independent.

It’s important to remove the word “burdensome” from your vocabulary early. Some of you can transition easily, however, if you were like me it could take months or even years to change your mindset.

Surrounded by his co-workers and friends at Jonny’s Dodgeball Tournament fundraiser (October 2018). 

If you are not fortunate to have any nearby friends or family to assist you with the day-to-day things you may need help with my recommendation would be to reach out to your local American Cancer Society chapter. Many times that chapter will have helpful free resources to make sure you get to your treatment safely and with a full belly. From there go on Google and Social Media to look for local resources that are available for you to take advantage of. Use your “Cancer Card” when you need it by telling those around you of your condition. One other way to ask for help may even be from your local elected representative. Not only will asking help you but also allow you to give that official a first-hand account of what it’s like for a young adult to live with advanced cancer. Potentially opening up a dialogue to improve or widen resources. Remember we can only improve things where we hear testimonials from!

Your oncology team will be checking in with you with weekly or biweekly visits to monitor your improvement. Make sure you report ALL side effects and pains you are feeling; like a journal. This can help them investigate your case more closely, especially when it comes to ordering more tests or scans. Eventually, you will be back into the radiology area getting a CT, PET, and/or MRI to see how your cancer is responding to this first line of treatments.

3 thoughts on “FOLFOX: My First Line of Chemotherapy

    1. Hey Didi, very very sorry for the long due reply. I received this pump bag from a good friend who went through his chemo and is currently in remission. I believe his friend made him it from scratch. There are many custom bags on Etzy and even Amazon. 🙂


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