We went back on Wednesday to the infusion center after pretreatment with antihistamines and steroids, hoping to try again. I was scared that I would have another reaction but mostly scared that such a reaction would stop me from being able to receive treatment.
As difficult as it was, I had to set aside the visceral fear of what was happening in my own body to approach the problem logically.
This was not, by any means, the first significant allergic reaction I’ve had. I’ve had issues with allergies my whole life, including lots of hives and wheals but never an anaphylactic reaction. I also had to consider that the medications I’d been given for the reaction had worked, and that there was a strong possibility that I would not have a reaction if given those same medications before the irinotecan. If all else failed, the cancer center was only feet from the ER. I talked through the problem with my oncologist and we decided to try FOLFIRINOX, with the standard irinotecan, a lot of antihistamines, and to see how it went. If it went well, we would try going back to the liposomal irinotecan with the next round. If it failed we would need a new plan.
Fortunately, the infusion went smoothly and I had no reaction to any of the drugs given the second time around. The antihistamines made me very tired, so I slept through most of the day and went home with the chemo pump. It was snowing lightly when I got home and Sara and I decided to go for a little walk to see if I could tolerate it.
I have a rule with walking, from the time of my hip replacement, that I have to go out every day, but I don’t have to stay out if my body is not handling it well. I have a 10 minute rule, where if I’m not feeling into it after 10 minutes I can go home. For my first day of chemo I didn’t even hold myself to that, but once we were walking it felt good. We did our normal short loop, which is a couple of miles, and headed home. I felt horrible by the third day with the pump, hardly able to eat and feeling really tired and weak, but I did feel a lot better, and more hungry, when I went out for my short walks. I was not sure if I could keep it up if side effects were supposed to get worse over time, but by the 5th day I was starting to feel more normal again.
For the second treatment we went back to the liposomal irinotecan and that went well with extra antihistamines too. I started eating more right after treatment and, somewhat counterintuitively, found that my digestion was a lot better with more food on board. I was lucky that things mostly tasted the same, and I made myself eat on a schedule even though I had little appetite.