Two down

Infusion number two of DS-1062a went off yesterday with only a minor hitch. Due to the profusion of side effects post one (my hair starting falling out a few days ago as well) it was determined that going down in dose was probably a good choice. In addition, I took 40 mg of dexamethasone the evening before and morning of and 20 mg more just prior to infusion, plus 1080 MG of fexofenadine HCL. Infusion was slowed down to three hours and half way through I was given an infusion of Benadryl–50 mg.

My throat got a little bit sore but did not swell up and I had no rash. The only issue was the over the top restless leg/crawlies from the Benadryl–I thought it would drive me out of my mind. JesY Wittebort had sent me some nifty leg compressors to help with the restless leg, but they just moved the sensation up to my arms. Hopefully I will be able to forgo Benadryl entirely next time–I wonder if I am part of the population who experiences paradoxical excitation. Whatever it is, I don’t want to feel that way again.

However, given the lack of an infusion reaction the day was ruled a success. Now I am at home resting, both out of necessity and also out of avoidance. I was thinking of going to the movies tonight but Alice and I spoke by phone and she feels it prudent that I keep myself out of harm’s way (crowds) as much as possible over the coming weeks. Introversion is not my nature but I really do not want to be exposed to COVID-19, a potential devastation for someone with compromised lung and immune function. I have a tall stack of unread books and my sons are getting me hooked up with Netflix so that I have diversion. And Diane continues to reach out to make certain I don’t need anything–from the store or otherwise. So I am in good hands.

Spring, clearer breather, making of art—these are the things I am focusing on now. I did get to the studio the day prior to infusion and I made myself walk the five flights up rather than taking the freight elevator. Up, it’s only up from here.


13 responses to “Two down

  1. Shirley Wilson

    Great news that you were
    able to tolerate the infusion better than last time ! I know what that restless leg feels like I have experience id with a couple for surgeries and when I have a cat scan ! ! not like you probably but it is certainly unpleasant ! sending hugs, and good advice about staying away from crowds

  2. Delighted to hear your improvement, Linnea. Hoping it will cont that way. And yes, stay away from people and have those near you use hand sanitizer. Here is a recipe for diy: Take care.

  3. Patti Helfand

    Happy Day! Glad to hear this one went better. Series to watch on Netflix-Schitts Creek. We think it is funny. I heard the Hunter is good-not sure if it is Netflix or Prime. Let me know if you have Prime. I have a list of movies from the Greater Phoenix Jewish Film Festival.
    email me at

  4. Great news. Thank you for the updates! We think of you often.

  5. Thanks for the update,
    Linnea. Restless leg syndrome is the worst! Hoping you have figured out a way forward . We are all toying with how much to socialize; just came from a belated birthday dinner with girlfriends. No hugs, just knee bumps. What have we come to?! Holding you up and hoping Netflix and some great art work will keep you going! ❤️

  6. Wow. It’s a lot. Yes I think staying out of crowds is a good idea. I ding it as much as possible. Hang in there. Hugs and kisses. Sean

  7. “Up, it’s only up from here” That sounds like an excellent and doable task a Linnea!👈🏼✊🏼❤️

  8. Lots of good things to watch on Netflix….glad you could make it up those stairs….awesome….and see if you can get Hunters on Amazon while you’re at it….couldn’t stop watching it…..P

  9. Two down! Yes!!!
    And glad your guys setting you up with indoor diversions. Even happier you’ve hit the studio. Onward! ❤️

  10. Great piece of news x

  11. So happy things are going better.
    You’ll love Netflix. Watch the series called Grace and Frankie. It stars Jane Finda and Lilly Tomlin. It was done well. Supporting cast is great. ❤️
    Love, Gail Orcutt

  12. Let your art lead the way. ❤️

    On Fri, Mar 6, 2020 at 7:15 PM life and breath: outliving lung cancer wrote:

    > linnea11 posted: ” Infusion number two of DS-1062a went off yesterday with > only a minor hitch. Due to the profusion of side effects post one (my hair > starting falling out a few days ago as well) it was determined that going > down in dose was probably a good choice. In addit” >

  13. I am so happy things went better this round. Continue to think about you and keeping those positive vibes and prayers going out.

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