Before I could start chemo there were a lot of logistics to take care of. The regimen I would be on was called NALIRIFOX. It is a newly approved regimen similar to FOLFIRINOX, consisting of three chemotherapeutic drugs and a synthetic B vitamin.
Before getting chemo I had to have a port installed under the skin of my chest. The port is connected to tubing that goes into a vein which simplifies vein access for delivery of the chemo drugs, blood draws and the like. It was a pretty simple procedure and I was sore for a few weeks after, but nothing too bad.
Once the port was in I was ready to start treatment, but the paperwork that needed to be sent to my insurance for approval was delayed and not submitted until the day before I was supposed to start treatment, so I had to be rescheduled for the following week. Luckily Kaiser was able to approve it the same day, and we went forward. In the meantime we had to prepare the house. There are special precautions to take for laundry, shared bathroom space and cleaning: I have to double wash all of my laundry and cannot share my (main floor) bathroom with anyone during chemo since some of the drugs are excreted through bodily fluids also.
Most of the drugs were to be given to me at the infusion center, which I was happy to find out, is less than two miles from my house. Each is infused over the course of minutes or hours, after an initial infusion of steroids and anti-nausea medications to make the body tolerate the treatment better. I was told to expect around 7-8 hours in the infusion center for the first round. The last drug, 5FU, is given over the course of 46 hours, so that is given through a chemo pump that goes home with me. Unlike Sara’s slim and modern looking insulin pump, this thing is a real clunker. It is big and has a UI that the 80s would be proud of, and remains attached to the port on my chest by a needle until the third day.
On the morning of my first treatment I arrived early, met with the oncologist then got hooked up to the infusion machine for the first time. It started with the pre-meds which took quite a while, and a cheesesteak from the hospital menu that I cannot recommend. Then we were ready to start the first drug, irinotecan. NALIRIFOX uses a liposomal version of irinotecan which is different from the drug used in FOLFIRINOX. It is slightly cloudy and hung in a large IV bag. The nurse hung it up, connected it to my port and told me to tell her if anything felt different, because I should feel the same. I felt the same for the first 15 minutes or so. Then I started feeling this strange sensation in my mouth, kind of like hives. I asked the nurse if this was normal and her eyes got a little wide. “No. No, that’s not normal.”
In the next few minutes my mouth got increasingly swollen, my hands developed a strange mottled pattern that was a shocking purple and I experienced, shall we say, gastric distress. Naturally for the latter I had to be accompanied by the nurse who made sure I stayed alive through it all. When you hear people say that nurses are saints you really have no idea. So, we stopped the infusion and they have me a large dose of IV Benadryl along with a lot of other things that I don’t remember. Over the next several hours all of my symptoms gradually resolved and I got to go home without the chemo treatment I’d been waiting so long for. They gave me prescriptions for a bunch of different types of antihistamines and dexamethasone (a steroid) to take at home and we scheduled a follow up two days out.