Sorry it’s taken some time to update everyone.
I spent 2 nights in the hospital getting steroids, antihistamines and fluids through an IV. My skin looked awful, I was covered head to toe in the rash- it kept me very hot and very uncomfortable. I was released on the third day (Thursday) after dinner time! Going outside felt great!!
It’s been slow going since getting home. My last dose of the Nexavar was a week ago tonight, so it’s crazy to see how much it’s still effecting me! My skin feels tight, dry, itchy and is quite senstitive to the sun. My palms and bottoms of my feet are tender and swollen, so walking is tough and I have a hard time even doing things like opening my meds bottles since my hands are so icky. I’m on a tapering dose of prednisone (an oral steroid) and an antihistamine (which I take every 6 hours) and have to get this stuff all handled before we move on to the next phase. My ER doc wrote me a note keeping me out of work until the 3rd, but the busy body in me sure hopes it won’t be that long. My primary care doc saw me Friday and expressed how he’d never seen a reaction of this scale either- so here I am, still exceeding expectations!
Next up will be immunotherapy!!!! I was approved for the drug while I was waiting in the ER (talk about having something good in even the worst days!). So hopefully I’ll start on that in the next couple of weeks. We have an appointment with Dr. Finn Tuesday to learn more about that plan.