I’m allergic to tree nuts and people nuts. It’s much easier to avoid the tree nuts. I wonder (often) if I’m the nutty one. Perhaps these are stories for another time. Today, I share what happened at a recent treatment visit.
Chemotherapies, hormonal therapies, and targeted therapies can all cause allergic reactions. This is true for just about any medication. Mild reactions involve rashes, hives, and itching. More serious reactions include nausea and vomiting, difficulty breathing and swallowing, and swelling of the face, eyes, or tongue. Anaphylaxis is the most severe allergic reaction.
I switched to a new chemotherapy last month – Taxol / paclitaxel. I received it over eight years ago as part of my original regiment. I have mixed feelings about returning to Taxol. On the plus side, it worked incredibly well for me. On the con side, I experienced a lot of flushing and I was hot and cold at the same time. I had insomnia. Lots of nausea. There were muscle and joint aches. A heavy schedule of steroids accompanied this regiment and those caused increased appetite and weight gain. I looked puffy and put on a good twenty pounds. Fatigue, fatigue, fatigue. Of course, there was hair loss. I even wound up in the hospital due to a nasty pneumonia I managed to develop with shingles at the same time. I’m giving it another go. See what I mean about possibly being the nutty one?
I took my large doses of steroids at 10 PM the night before and 4 AM the morning of chemo. Surprisingly, I didn’t have sleep trouble as I thought I would. I figured I may as well stay up when I took the early morning dose since food was recommended and I doubted I’d fall back to sleep.
I spent my extra time with a good weight and cardio workout, followed by walking. I had over two miles in before I left the house. I wanted to make the most of feeling good before feeling crappy and more crappy took over. I felt like a boss going into my day.
All went well at the hospital. My labs were excellent, the best they’ve been in some time. My office visit was positive and upbeat. A medical assistant not assigned to me came in and spent a few minutes catching up. I hadn’t seen her in a while and she just wanted to say hello. Small kindnesses like this are so appreciated.
Treatment even started fine. I liked Brittany the nurse who was assigned to me. She attended a hot yoga event I planned as a fundraiser much earlier in the year. It created an instant bond for me. Those bonds are important because I know I am thought of as a person and not just a patient. I was given a bed which is standard for new drugs in case there is a reaction. Not only did I have a bed, but I got a big room with plenty of space for all my stuff that comes in tow with me. I even had a private bathroom where we could put on my cold cap. I felt I had a suite for my stint at the chemo spa.
I use a cold cap and hope to save my hair with it. I pre-cooled longer than necessary at my request because I wanted my scalp to have a little extra boost. A couple of other nurse friends popped in to visit. Denise gave me a beautiful painted rock with a chickadee on it because I had a rough go the last time I was there when I learned I had to switch drugs. She requested it from a friend who paints rocks not knowing chickadees are my one of my favorite birds. This dreaded day was going far better than expected.
Brittany returned to start the Taxol. The protocol followed is for the nurse to stay for the first 15 minutes of the total 60 of the infusion. An allergic reaction would most likely happen in that time if one were to happen. I had no symptoms. I didn’t feel hot or itchy. My breathing was fine. Swallowing was fine. All my vitals were excellent with my oxygen in the 98-99% range. I attribute it to the merits of a solid workout. Nothing was abnormal.
As required, I was given lots of Benadryl through IV. It’s also a precaution for a potential reaction. It made me drowsy. The only comfortable position for me was to lie back with pillows propped around my head. My head was titled back far but it was comfortable, and I felt I might doze for a good portion of this process. So much the better. The bowling ball of a cold cap I wear on my head diminishes most feelings of real comfort. I finished my hour infusion and moved on to the post-cooling phase. I got unhooked from the IV pole and moved to the nearby chair so I could catch up on some laptop work. It would pass the 60 minutes I needed to cool with the cold cap.
Toward the end of this time I happened to touch my throat and felt a bulge. I read later in my treatment notes it was the size of a golf ball. There was also swelling that seemed to extend to other parts of my neck. Uh oh. Immediately, I pressed the call button. Brittany agreed it was not good. I answered lots of questions. I had no other symptoms. My breathing was good and my vitals were all still excellent. I could drink water smoothly without swallowing difficulties. My voice was a little scratchy. That was possibly bad, but I make an effort not to hydrate tons while there because I don’t like being unhooked from the scalp cooling machine for even a few minutes to use the bathroom if I can help it. There was a plausible explanation for my voice not sounding like usual.
A wrench was now thrown into an otherwise successful day. An allergic reaction was the likely cause. It didn’t seem too bad. I cried briefly because some stupid thing always seems to happen to me. I was no longer a boss. I was hooked back up to my IV and shot up with more steroids. No Benadryl as I drove myself. I was observed for an hour and there really was no change in the size of the bulge in my neck or swelling.
Over the course of that observational hour, I thought about what I had at my disposal to speed things along. I had ice in my lunch bag. It was too hard and unmalleable to my throat. My frozen drink was still cold and the perfect size. I could roll it from the top of my throat down and it felt good. I thought I was getting results after 5 minutes. I knew I was after 10 minutes and the swelling had gone down.
Brittany returned with the decision that I could go home but I needed to call 911 if anything changed. I told her I had iced it and we agreed the swelling had gone down a lot. I was glad to hear I could go home because I had also decided I was leaving. I arrived by 8 AM and didn’t leave until around 5 PM. I was exhausted, hungry, and confused.
I wasn’t really sure what had happened. It just didn’t fit the mold for a classic allergic reaction. Everything was back to normal by 7 PM that night. I’m weird in terms of unusual or delayed responses, but I still don’t think this was one. There were no internal symptoms (other than the swelling) that showed up like difficulty breathing or swallowing. My vitals remained normal. I figured these would fluctuate if I were allergic to something. The timing was off. Ice wasn’t going to resolve an allergic reaction. Drugs would. Plus, pretty much the exact same thing happened the following week during the pre-cooling phase before Taxol was even given. My money is on the cap and the chinstrap tightness. After a discussion with the capping company, they agreed improper positioning of the chinstrap was the likely cause. My bad. It would be lovely to have something like that checked by qualified staff. The mask covers the strap, but still.
The small possibility exists of something going on drug wise that no one can figure out. What happened wasn’t desirable at all, but it supports two common phrases in the metastatic breast cancer community: There’s always something. And the something can always be worse.
I seem to have my share of somethings.