I’m Not Alone Apparently

“The simplicity of it is, We’ve been living our life. Apparently so have many others. It’s a positive.” – Lori Puente, Myeloma Caregiver  I was noticing a few things in my stats and so like following bread crumbs, it took me to old haunts. Blogs. Websites. I began to wonder, “Oh yeah, how are they […]

Current Regimen

  “We thought that we had the answers, it was the questions we had wrong.” – Bono So to bring you up to speed a little more, we are on Daratumumab (Darzalex). The seemingly more popular of the new immunotherapies that came out November 2015. When we were told we would be moving to that, I was scrambling […]

Changes

“Science without religion is lame, religion without science is blind.” – Albert Einstein I’m not a particularly religious person, but I am a devoutly spiritual person. I guess you could put me in the category of all the weird new age stuff, although I would reject that label. I just found my way with some […]

The List

  “Has anyone seen my brain? It ran off flailing and screaming about being overwhelmed this morning. I’d really like it back.” – Unknown   This week I’m dog sitting nearby at someone’s home (not my usual, they usually stay at my house). Anyway, it’s a good quiet time for me to ponder all the […]

And here we go again…

    “Change is the only constant, whether it’s in music, culture, dance or fashion.” – Sonu Nigam     First, I’ve missed you guys, although many of us have migrated over to FB and the various groups there that offer us information, hope, and inspiration.  I’ve felt for some time, as you may recall, […]

IMF Take Action (ICER)

Take Action: Let CMS Know that ICER Recommendations are Bad for Myeloma Patients IMF has set up a great response with talking points and necessary links for you, the patient, the family, the caregiver, the nurse, the doctor, to make your voice heard on the ICER recommendations as well as how it will specifically be […]

ICER EPIC FAIL

“Hidden Agenda: an often duplicitously undisclosed plan or motive.” A recent “report” by a group called ICER (Institute for Clinical and Economic Review) has issued a 139 page “DRAFT” of a report attempting to evaluate Multiple Myeloma, it’s treatment protocols, drug cost comparisons and QALY (Quality-Adjusted Life Year see: Wikipedia Definition). Given my headlining quote, […]

Second Darzalex Infusion

“Success is the sum of small efforts, repeated day in and day out.” – Robert Collier Well, it’s Easter Sunday and we are at the infusion center getting the second darzalex infusion, and honestly, I couldn’t be happier about it. Two down before he leaves for his business trip tomorrow morning and a short visit […]

Tomorrow

Tomorrow Dave begins his new therapy with Darzalex. We have to premed with Allegra, Singular, Benadryl and Tylenol. Dave is nervous, understandably so. Basically what I’ve learned is this side effects are infusion related. That means that the infusion itself is where the  side effects will present. Other than that, he should be fine. So […]

Riding The Wave – Multiple Myeloma 2016-03-21 05:29:22

“Lori! Your voice is missed! – Pat Killingsworth Before I launch into what is happening with Dave and I, I have to spew my pain at the loss of Pat Killingsworth. OMG! How can this happen? Pat and I had a very tumultuous beginning in our friendship. He was anti SCT and very ANTI LITTLE […]