by Pat Killingsworth, multiple myeloma patient and blogger
I wanted to write about a topic that’s near and dear to my heart this month. In a multiple myeloma world, that is increasingly being broken down into groups and types (MGUS, smoldering, asymptomatic, newly diagnosed, low risk, high risk, nonsecretors, etc.) I wanted to suggest adding a category that applies to more and more of us as we live longer: experienced.
I often use “late stage” to describe patients like these. But the team here at the MMRF convinced me that “experienced” is a more accurate description. Who qualifies as an “experienced” multiple myeloma patient?
To me, that’s anyone who’s relapsed. Earlier survivors that are still living the honeymoon period of remission and/or stable disease need not apply. No, until someone has experienced the kick-in-the-gut feeling of hearing one has relapsed, I don’t consider them an experienced patient.
Now that’s an all inclusive view. To me, “experienced” or late stage patients have lived through a number of relapses. We’re the ones who are running out of options. We’re the ones desperately searching for just the right clinical trial, and holding our breath, hoping the latest, greatest immunotherapy drug becomes available in time—and works for us—even though it is only likely to help 30% or so.
Here’s why classifications like these are important. Let’s look at “high risk.” As many of you already know, a high risk designation means that a patient has one or more serious genetic deletions or translocations— indicators that myeloma therapies may not work as long as they do for most others.
Did you know that anyone who has relapsed several times is considered high risk? Makes sense if you think about it. Our genetic makeup changes as our bodies are exposed to high dose melphalan, and other novel therapies, for long periods of time—much longer than they were designed for.
Still, I think just calling an experienced patients “high risk” isn’t specific enough. Experienced patients have been through so much. We have so much to teach and share with other patients.
Experienced patients need to be careful. I know when I write my blog —or for the Myeloma Beacon or others—I need to be careful not to be too honest; to take the edge off a bit.
Listen, newly diagnosed patients—high risk or not—have so much to be hopeful about. But by the time you reach the point I have, it is impossible to be nothing but positive. I’m running out of options. My doctors and I need to be creative—and if my doctor isn’t willing to do that I need to find one that will.
I’m positive and hopeful. I’m also realistic. The tricky thing is to not bring newbies down by overly focusing on the negative elephant in the room; that I could die soon.
But that’s the thing. To just smile and say everything is going to be OK is disingenuous. In my eighth year, I’m constantly in danger. I could develop pneumonia or sepsis and quickly go downhill. Even a planned modified autologous stem cell transplant (my second; the first didn’t work well four years ago) may not help much.
My current therapy regimen of Cytoxan, Kyprolis (carfilzomib) and dexamethasone (CCd) has the potential to stop working. If that’s the case, my hope is that carpet bombing my myeloma using high dose melphalan, combined with a variety of other drugs, might help stave off the inevitable.
I know experienced patients that have lived 10, 12 or 14 years. Heck, dearly beloved Mike Katz lived 25 years without ever transplanting. But these are exceptions to the rule. A decade is still an amazing achievement for anyone diagnosed with symptomatic multiple myeloma.
Experienced patients need a forum to discuss their hopes, fears and feelings. I’m working hard with the MMRF to develop such a forum.
Isn’t the multiple myeloma community amazing? It’s difficult even for an experienced patient not to feel hopeful with such a supportive community!
Feel good and keep smiling!
To learn more about Pat Killingsworth: Multiple Myeloma Blog