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.
Shit. Hope they pull a new strategy out of their ass for you. So sorry about the discomfort. That must have been scary. Love you.
Oh Linnea, you have been through too much today. Your team WILL find a way for you to complete this trial and thrive after you recover. Love and energy are flowing all around you. Do you feel it? Millions of people sending you the will power to believe this is going to happen! This is going to work!❤️
Ugh! Oh, Linnea, so sorry that this is how an already crazy difficult day /experience had to end. Sending hugs and love ~Karen
Arghhhh! So sorry to hear that you have a bad reaction to the full dose. Maybe a full dose isn’t even necessary if you (and your cancer cells) are that sensitive to it? In any event, I sure hope they can come up with a balanced approach to letting you try this treatment.
Craig in PA
Damn it Linnea! This stinks and I will hope, hope, hope that Dr. Lin and team figure this out for you, pronto. XOXO
Let’s stay positive. They are going and re-cocktailing it up for a successful run on the next one!
Love you Love you Love you sooo much! Sending you support and strength and so much hope!!!!!! ❤ m
I’m so sorry to hear about your terrifying experience. You are so strong and so loved. I hope you are on the 9th floor of Lunder. There is no better place for you to be! The most amazing staff who will do whatever they can to keep you comfortable. I hope you have a peaceful night! XO
A small step but a start and there’s a plan!👈🏼✊🏼❤️
Much much love all fingers crossed!
First of all, thank you SO much for reporting in, despite having had such a horrible and exhausting experience. We are all thinking of you with such a mix of anxiety and hope, and a huge portion of love and support. Here’s to a swift response from the team as to how to proceed, and then onward. Much, much love