The pivot I missed: FOLFOX vs FOLFIRINOX

Big update, mea culpa on missing a big, huge pivot in my care plan and it all makes so much sense to me now. Until this week I thought I was in the ring with FOLFOX but it turns out my first and subsequent chemos are the most potent chemo cocktail for GI cancers with metastasis - we skipped from FOLFOX and escalated to FOLFIRINOX, the most aggressive version of this regimen, and I completely missed that pivot in the moment. Looking back now, everything that has crashed down on me over the last week makes painful sense.

The source of almost all my pain has been my abdomen. The lesions in my liver have been growing fast and aggressively, and that is what we are desperately trying to get under control. FOLFOX, the standard backbone, was not going to be enough on its own. So my care team escalated to FOLFIRINOX. This was not one person's call. It was a tight collaboration between Dr. Sidani at Northwest Cancer Centers, Dr. Shergill at University of Chicago Medicine, and a third opinion from Dr. Manz at the Dana-Farber Cancer Institute in Boston, all consulting on my case together, which adds a fourth heavy hitter to the mix. More firepower against the tumors, but a much steeper price on my body.

I built a Gemini powered infographic to help me see it side by side, and I want to walk through what I learned so anyone else who finds themselves staring at these acronyms in a clinic chair has a fighting chance of understanding what is actually being put into their port.

A quick note before I go further: I am not a doctor. This is me, learning out loud, in my own words. Please do not use any of this as medical advice. Talk to your own care team.

What the eff do these letters actually stand for??? Both regimens share a three drug foundation. FOLFIRINOX just adds a fourth.

FOL is Folinic Acid, also called Leucovorin. It is a form of vitamin B and it is not chemo itself. Its job is to make the next drug, 5-FU, work harder.

F is Fluorouracil, known as 5-FU. This is an antimetabolite. It stops cancer cells from copying their DNA.

OX is Oxaliplatin. A platinum based chemo drug that damages the DNA of cancer cells so they cannot replicate.

That trio is FOLFOX.

FOLFIRINOX is the same trio plus IRIN, which is Irinotecan. Irinotecan is a topoisomerase inhibitor, which is a fancy way of saying it blocks an enzyme that cancer cells need in order to copy themselves and grow. Adding it turns the regimen into a much more intense, multi-front attack on all that’s growing - the tumors and lesions multiplying everyday I’m not in the fight.

So, in shorthand:

FOLFOX equals Leucovorin, plus 5-FU, plus Oxaliplatin.

FOLFIRINOX equals Leucovorin, plus 5-FU, plus Oxaliplatin, plus Irinotecan.

Why doctors choose one over the other for my case???

FOLFOX is the standard of care for a lot of colorectal cancer (stages II, III, and IV) and is sometimes used for gastric or esophageal cancers. It is tolerated by a broader range of patients, including older adults and people with more moderate fitness levels.

FOLFIRINOX is the heavier hitter. It is the first line standard for advanced or metastatic pancreatic cancer, and it is often used to try to shrink tumors before surgery (what they call neoadjuvant treatment). Because it is so toxic, it is usually reserved for patients who have what oncologists call excellent "performance status." Translation: you need a strong physical baseline to survive what it does to you. Ugh - scary to read this but I’m 55 and planned to live much longer than this.

In my case, the aggressive liver metastasis is what tipped the scale. The team felt I needed the bigger hammer, fast. The pain was so bad I needed to be hospitalized for my first treatment for pain management, scanning for infection, etc. In fact, my symptom I have is related to fatigue and pain in my abdomen that came on almost overnight.

The side effects, and why my last week makes sense

Both regimens share a lot of the same hard stuff:

Fatigue that is cumulative and bone deep. Not "I need a nap" tired. More like "the floor is calling me" tired.

Cold sensitivity and neuropathy, driven by Oxaliplatin. Numbness, tingling, pain in the hands and feet, made worse by touching or drinking anything cold. On Mother’s Day when we went out to dinner it was so weird to ask for room temperature water, they looked at me like it was nuts.

Nausea and mouth sores from 5-FU. Standard issue. Yeah, this one came on like a ton of bricks but instead of feeling nausea I was just flat out vomiting two days this week:(

What I did not fully appreciate is what Irinotecan piles on top of all of that:

I’m horrified and mortified to discuss this in a public forum but cancer rips away your prudish and dainty avoidance of this topic: Severe diarrhea. Irinotecan is notorious for it, both the early onset kind and the late onset kind. It often requires aggressive management with atropine or loperamide (Imodium). This is part of why my abdomen has been such a battlefield. Ugh. 😩

Higher risk of neutropenia. That is a steeper drop in white blood cells, which leaves me much more open to infection. Patients on FOLFIRINOX are commonly given growth factor injections like Neulasta to help the bone marrow keep up. This is why I was taking the shot one week ago today, post discharge from UofC.

Hair loss. FOLFOX usually causes some thinning. Adding Irinotecan makes significant hair loss much more likely. That tracks with what I am starting to see. Oh and I can’t color my hair. I’ll be a “grey fox” soon:) I will definitely need a way to muster up the courage for a wig but it’s already time. That fast.

When I line up the last seven days against that list, it stops feeling like "something is going wrong" and starts feeling like "this is exactly what this drug does." Which is, somehow, both terrible and a relief.

Pardon the pun but damn, what a SHITSHOW. 💩