I had a chance to speak to Alice today about my reaction on Tuesday and one of my questions was how common IR’s or infusions reactions, are. Not rare, but in the single digits as far as percentage.
So far I’m not doing a very good job of being unremarkable.
The good news is that we have the go ahead to try again. Plan of action is to stick with the pre-dosing of Allegra and steroids, but to also dose again just as we are beginning infusion. And to infuse at 1/2 the rate with Bendadryl administered intravenously simultaneously.
I’m going to be coming and going and am definitely not looking forward to a repeat of the Benadryl crawlies. My friend Gina sent me a weighted blanket and I will bring that with me on the day of infusion to see if it makes a positive difference.
In the meantime I’m feeling OK. Profoundly tired yesterday but I have to wonder if some of that was just coming off all the steroids. My fatigue is more low key today.
Onward. I hope this shit works. Particularly as this is mutation agnostic, and therefore potentially a viable treatment option for a large number of people.
So oh boy. Infusion began around 12:40 pm with little drama. However, just about an hour in, my throat began to suddenly hurt. I was looking for the call button but my nurse was peeping through the glass doors. When she came in I explained that not only was my throat painful, it felt as if it was swelling shut.
She immediately turned off the infusion and then things got a little bit more exciting. My neck and back developed a rash and hives and the strange feeling in my throat moved to my palate. It was getting harder to breathe and an oxygen mask was put on and I was given intravenous benadryl as well as more steroids. Lots of people in the room assessing the situation as this was a classic infusion reaction/hypersensitivity–despite pre-dosing with antihistamine and steroids.
Damn. I was hoping I could will myself to not react. But no. Saline was administered next and a repeat of steroids as my throat wasn’t feeling any better and I was starting to cough as well. And then restless leg syndrome kicked in crazy bad as a result of the Benadryl.
An hour passed before the symptoms of hypersensitivity subsided (but not the restless legs) and we gave it another go at a titrated speed. Forty five minutes later, my throat was suddenly very painful and swallowing difficult. The back of my neck started to itch and rash out as well and so the infusion was stopped. I was given more steroids and an executive decision was made not to finish dosing.
We clearly have a complication going forward. I really don’t want to drop down on dose if I don’t have to. Dr. Lin is going to have a discussion with the trial team and sponsor to see if they can come up with some strategies to get me through an infusion.
So here I am four more EKGs (I was mistaken as to how many were required today) and a whole lot of blood draws later. One more EKG at 7:30 and two more vials of blood and then I am released. Long, long, slightly disappointing day.
Hopefully my cancer is currently as uncomfortable as I am.