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.
I shall keep you posted 🙂
Keep up the courage! Giving you all my good thoughts.
I am sending positive thoughts your way. I hope the second infusion is more tolerable. You are a remarkable guinea pig with such strength.
Keep it up.
xoxo Patti Helfand