My life as a myeloma patient has so far been fairly private. This blog may change all that. I am good with it. Now that I am an IMF group leader (rather than a proud substitute for Mike Katz when he was traveling), I feel a greater responsibility to other patients. I will allocate a daily period to read Smart Patients, catch up on the Myeloma Minute, and attend to my own treatment. Being invited by the IMF to 57th American Society of Hematology (ASH) Annual Meeting and Exposition ratchets me into an utterly new world of very serious information.
As is my mode, I will prepare, prepare, prepare. But first I must manage my procrastination. I haul out my IMF Patient-Family Seminar handbooks from the last 11 years and skim for topics that are still confusing . . . back to differentiating SPEP . . . and Flow Cytometry . . . and Electrophoresis. I know where to find quick answers, of course—on the IMF website!
I categorize treatments to remember them. Two new medicines were approved last week by the FDA (unprecedented!), so I need to embed them in my memory. The first Oral Proteasome Inhibitor (Ixazomib to be known as Ninlaro™) and the first Monoclonal Antibody (daratumumab to be known as Darzalex™) will be available shortly. I practice pronouncing their ridiculous names. (But since my wife was formerly a trademark attorney for a gigantic pharmaceutical company, I get the ridiculousness.) And I create some new categories for myself. Here’s a pneumonic:
PHAMIS as in “famous”:
P for Proteasome Inhibitors [Ninlaro™ (ixazomib), Kypolis™ (carfilzomib), Velcade™ (bortezomib)]
H for HDAC Inhibitors [Farydak™ (panobinostat)]
A for Alkylating Agents [Melphalan, Cytoxin]
M for Monoclonal Antibodies [Darzalex™ (daratumumab)]
I for Immunomodulatory Drugs [Pomalyst™ (Pomalidamide), Revlimid™ (lenolidamide), Thalomid™ (thalidomide)]
S for Steroids [Dexamethasone, Prednisone]
PHAMIS is good, however, SIP HAM, AMPISH, and HI MAPS were in the running.
As usual, when I have forgotten some info and am feeling in a fog, I go to myeloma.org and look at the basic information pamphlets.
Dr. Durie sent out a preliminary guide to presentations that we will attend at ASH. I am determined to get familiar with their topics. I want to find out whether I can forego my Velcade abdominal shots and start on the oral version, but first need to understand whether their biological actions are identical. My maintenance treatment is working, and it is a bit scary to change it for the sake of convenience.
Only days to go until I leave for Orlando.
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The Westchester Myeloma Support Group