The nitty gritty on my treatment, what is actually going into me

I keep learning more about the actual medications going in to my body, the mind blowing device that sticks to my arm, what each drug does, and why my team picked this particular combination. So today I want to slow down and walk through it again and start to make sense of the genetic components playing in to all decisions.

A quick disclaimer before I dive in and I said it before, I am the student. This is my way of learning. I am a patient trying to understand my own treatment so I can be a real partner in it. Everything below is how Dr. Sidani at Northwest Cancer Centers, Dr. Shergill at University of Chicago Medicine, and Dr. Manz at the Dana-Farber Cancer Institute in Boston have explained things to me verbally or in writing, simplified through my own brain that is compromised due to pain meds and chemo drugs.

As we know, the big picture is that my treatment is not one drug. People with their best intentions are asking very simple questions, but there are no simple answers. The amount of information these oncologist have to consider is like working a big jigsaw puzzle that only has one answer that is correct for their individual patients. Sure there are common threads, but everybody’s cancer path seems to be very different.

It is a layered strategy with three different jobs happening at the same time. There is the core chemotherapy that goes after the cancer broadly, a targeted therapy that blocks a specific growth signal the cancer is trying to use, and an immune system booster that keeps my white blood cells strong enough to actually tolerate the chemo. I’m thinking of it as a baseball team. Everyone has a role, a job, a strategy and coach. Being married to a baseball guy I have learned a tremendous amount of strategy that goes into winning games and it is not easy. Sure this is over implication but I wanted to give this analogy because it’s just part of my world and makes simple sense out of a complex topic.

The core mFOLFIRINOX - We know what it stands for, but I’m gonna spell it out again because it helps me learn.The letters stand for Folinic acid, Fluorouracil (the FU), Irinotecan (the IRI), and Oxaliplatin (the OX). Each one attacks cancer cells in a slightly different way, which is the whole point. Cancer is sneaky, and hitting it from four angles at once gives it fewer places to hide. The little “m” in front matters more than it looks. The m stands for modified. The standard version of this combination is famously brutal, so my care team uses a modified protocol that adjusts specifically for my genetics. The goal is to keep the regimen aggressive enough to actually fight, while purposefully trimming back the worst of the side effects so my quality of life is not destroyed in the process. That balance is everything. It is the difference between treatment I can keep showing up for, and treatment that breaks me. I did feel broken the last few days if I’m being honest with myself and everybody else.

The Oxaliplatin in this combo is the one responsible for that wild cold sensitivity I keep talking about, the electric zaps when I touch anything cool. Knowing that is oddly comforting. It means the drug is in my system doing its job, and the weird neuropathy is a side effect, not a sign that something is going wrong. It is freaking weird though I will tell you and one of the strangest things to make normal as I figure out how to navigate my day-to-day life.

This next part is new information to my journal and has come because of specific testing results that I have received back that allow for targeted therapy. Meet Erbitux (Cetuximab). Erbitux is the sniper. I definitely had to use Gemini to understand more of what this is all about and it is not chemo in the traditional sense, it is a lab made protein (a monoclonal antibody, if you want the fancy word) that specifically targets something called EGFR. EGFR are little antennas on the surface of certain cancer cells that pick up signals telling the cell to grow and multiply. Erbitux blocks or caps those antennas. No signal in, no growth instructions, the cancer cell is essentially starved of its growth orders.

There is a catch. Erbitux only works if your specific tumor has what is called KRAS and BRAF wild-type genes. Wild-type just means normal and unmutated. If those genes were mutated, the growth switch would already be stuck in the on position from the inside, and blocking the outside antenna would not matter. My genetic testing came back wild-type (of course it did;) which is a genuinely big deal. It means Erbitux is actually an option for me, and that is the moment my team could layer this targeted therapy on top of the chemo instead of just throwing more chemo at the problem.

I do not say this lightly. Hearing the words KRAS and BRAF wild-type was one of the first real pieces of good news in this whole process. It expanded my options. That is once I understood what that actually freaking meant.

Now, remember how I had to go to the hospital after I was discharged the following day to get that shot in the arm? Well, that is all about restoring my immune system and now I’ve been introduced to this wearable tech (fascinating to me) called Udenyca. Aggressive chemotherapy like mFOLFIRINOX hammers your bone marrow, which is where your body makes white blood cells. That can cause a dangerous drop in neutrophils, the specific white blood cells that fight off bacterial infections. The condition has a name, neutropenia, I have it and it is the reason chemo patients can get a fever and end up in the hospital from something as ordinary as a paper cut or a stomach bug.

Udenyca (pegfilgrastim is the generic name) is a white blood cell booster. It acts like a hormone that walks up to my bone marrow and basically says, make more, faster. Within a few days my body is producing fresh neutrophils, and the infection risk drops dramatically. Supposedly taking a Claritin helps with the side effects that will feel like deeply aching muscle cramps in my large joints like hips.

Here is the part that fascinated me. Udenyca is not given as just a regular shot at the clinic. It comes as an On Body Injector, a small device that gets stuck to the back of my arm at the end of my infusion day. It sits there quietly for about 27 hours, and then, on its own schedule, it delivers the full dose over about 45 minutes. No second trip back to the clinic the next day. No having to inject myself. The goal of Udenyca is not just to keep me out of the hospital. It is to protect the next cycle. If my white count crashes, my team has to either delay chemo or reduce the dose, and either one gives the cancer more breathing room. Udenyca is what lets me stay on schedule, on strength.

Why all three together.

When I zoom out, the strategy is actually elegant. mFOLFIRINOX hits the cancer broadly from four directions. Erbitux blocks the specific growth signal the cancer is trying to use. Udenyca makes sure my immune system stays strong enough to keep tolerating both of them. Take any one piece away, and the whole thing gets weaker. Together they are a real plan.

It was so odd because I was standing out on my patio and while I knew that it was getting close to time for this thing to deploy, it hit me like a little electrical current almost like a mosquito or bug bite. Then I could hear the medicine pumping through this little box sticker on my arm the most liberating part of having this done was that I was finally allowed to shower and we were all heading to our favorite restaurant to celebrate my bonus son Gavin 16th birthday. I prayed that the timing of my side effects would allow me to make it through another dinner similar to Mother’s Day and fortunately it did. I took another one of the the greatest showers of my life and we got in the car and had a beautiful dinner together as a family. Gina had already left for Austin as most people know so it was just Gavin, John, Bobby and myself.

More soon. Thank you for caring enough to read all the way through this one.

PS - one very special sidenote is that there was a gentleman who I have known since 2002 who was at the restaurant eating dinner next to us and had heard about my diagnosis. He’s one of the most generous and smart business people I know from Northwest Indiana, and he very graciously paid for our entire dinner as a surprise. You know who you are, I love you and thank you from the bottom of my heart for your generosity and kindness.

Love,
GoGo