Round 1, Day 3, hindsight

so i didn’t explain how we are going to track this Radicava adventure. The schedule is 14 consecutive days of infusion then two weeks off. Next is 10 infusions over a 14 day period. Then another two weeks off, and the cycle continues with 10 infusions, two weeks off, and so on until further notice.

my plan is to:

  • continue to post after each infusion.
  • complete an ALSFRS-R after each round for a quantitative assessment.
  • include notes with each post for qualitative assessment
  • include a rating on a scale from 1-10 with 1 = death and 10 = million bucks after each infusion.

Sound like a plan, Stan?

My ALSFRS-R score on 10/4/17 was 34. here are my historical scores:

Round 1, Day 3 notes: some lightheadedness in the afternoon, took a power nap and felt so much better.

Round 1, Day 3 rating: 6

Tribe support for life 💜

3 thoughts on “Round 1, Day 3, hindsight

  1. I’m right with you on that 34 plateau
    That is a great idea to document everything. I am wondering how it will work with travel. I hope to start a week from Monday.


    • so, i just figured out how to reply to comments – duh! so glad you’re getting started, i am hoping to get the port scheduled soon. so far the iv isn’t horrible but not fun. the health care place packaged my stuff into daily packs so i just grab a bag and have everything i need, whether i’m getting it in their office, at home, or at a friends house. i go in to get my iv changed out every 5-7 days, then administer at home the other days. from what i understand, the port process will be the same – i’ll go in to the infusion suite access the port every 5-7 days and continue to administer at home. how are you feeling? have you started? have you gotten the port?


      • I got my port on Tuesday. Now the infusion supplier just needs the contract manager’s signature and he is gone this week. like you call it: Radicava Ridiculousness


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