[Mermaid100]

I have a story

by Mermaid100 on Tue Sep 30, 2014 10:07 pm

Hello! When hospitalized in the ICU with a hefty case of pneumonia in April 2012, I was diagnosed with multiple myeloma and immediately went down a rabbit hole.

Off into a then unknown world of oncology, hematology, labs, meds, biopsies, scans, trans­fusions, 2 pre-stem cell transplant chemo regimens, 2 stem cell harvest attempts (only to find out I don't produce enough stem cells for a transplant), countless injections, and that's just a portion of the physical demands.

I've been on Velcade, Revlimid, Kyprolis (carfilzomib), and, as of June this year, an oral cocktail called ClapP-D (my doc finds this acronym hilarious), which is 4 mg Pomalyst (pomalidomide) (days 1-21), 500 mg Biaxin (clarithromycin) 2x/day (every day), and 20 mg Decadron (dex) (day 1, 8 and 15).

My response to this has been very favorable -- M-spike went from 1.2 g/dL (12 g/L) to 0.5 in one cycle and is now at 0.1. Kappa/lambda ratio went from 157 to 35, and hoping it is in the normal range so I can get the dex reduced. I get my labs drawn tomorrow and am curious to see what will be revealed.

Over the last 2-1/2 years I have actually felt pretty good. I see an integrative oncologist who has really helped me with my diet and lifestyle.

Much, much more has happened, but this is a forum, not an autobiography! BTW, for a number of reasons, I have emerged from my rabbit hole and getting back in the full swing of life.

[Multibilly]

Re: I have a story

by Multibilly on Wed Oct 01, 2014 8:12 am

Welcome to the forum Mermaid. It sounds like you already have a lot under you belt and are doing pretty well.

CLAP-D always did make me laugh as well ... what were the docs thinking?

In any case, I'm glad you eventually made it out of your rabbit hole. Did you run into Alice down there?