My Myeloma: A Rant from Captain Chaos

a6fee17f-3857-4343-82a3-b37f908cc575My – My-My-MY-Myeloma!  Just sing that to the chorus of The Knack’s, My Sharona—it really fits.

This crappy disease – multiple myeloma—is my myeloma.  It manifests itself differently in almost every individual. One drug works for one patient, but doesn’t work on another.  Frustrating to say the least.

I was on 3 lines of approved treatment that basically did nothing except beat down my hemoglobin, but didn’t improve my disease markers.

I just celebrated my 6th Cancerversary on the first of March. I’m currently dong a Phase 1 clinical trial on sub-coetaneous delivery of Daratumumab, a cancer drug designed to treat multiple myeloma, and it’s going well so far.

I guess I’m just pissed……not really at anybody or anything, just pissed that I have this miserable malady, and I can’t do anything about it, except dose the cancer cells in chemical warfare.

I’m pissed that my senior years are not anything like I had planned.  All I do lately is go to one doctor or another, eat tons of pills, and try to power through the problems as they come up.

However, there is hope in the form of new drugs.  The FDA approved 2 new meds last November and December, with more on the way.  The drug landscape is much better than 6 years ago when I was diagnosed, so I am thankful for that.

For me, though there are days when I feel beaten down, I never let it take me down. I’m thankful for my super support group – my wife Terry, my kids, my doctors and my friends, that insist I look great even when I know better.


I have so much left to do—I can’t let this cancer knock me down!  CANCERLAND is a crummy place, easy going in – hard coming out.

As March is Myeloma Awareness month, I ask that you please take a minute to visit the IMF website, and possibly make a donation. They are doing great work and advocate tirelessly for the disease, drugs, and patient care.

Let’s make March a “Kick Myeloma’s Butt” month and work for a cure!

Myeloma Sucks

Captain Chaos (AKA Tom Pope)