Who knew maintenance therapy could be so hard? My white blood count has a history of being suppressed by Revlimid. No surprise there. And my counts have always bounced-back following a week of rest. But since my stem cell transplant 15 months ago, that reliable resiliency has vanished.
The absolute neutrophil count (ANC) is a one of several “must watch” numbers for multiple myeloma patients. It measures the number of mature white blood cells that are available to fight-off infection. I have a history of Revlimid suppressing my white counts. In the past, reducing the dose over time seemed to be enough. Not anymore!
At the end of my last 21 day Revlimid cycle (no dex), my ANC count was a low 1.0 and dropping fast. Since I was scheduled to travel to Boston–and later to Grand Rapids, Michigan–my medical oncologist suggested I take a syringe filled with neupogen on my trip to self inject my first travel day.
Neupogen is commonly used to help our bodies produce more white blood cells. Typically, my ANC count should jump from, say 1.0 to 3.0 following a single injection. The bump doesn’t last very long, but it does hold for two or three days.
I am currently taking 5 mg of Revlimid, 21 days on and 7 days off. Since I was traveling so much last week, I fudged and took 8 days off. The result?
No change. My ANC count was 1.0 yesterday.
Really? No Revlimid for 8 days and a neupogen shot, and my ANC didn’t improve at all?
This presents a problem, besides my not feeling well. 5 mg Rev is the lowest dose one can take. Yes, I could switch to a two week rest cycle. But at some point, why bother at all?
And the ironic thing is–IT’S WORKING! Yesterday I learned that my M-spike was still ZERO! Honestly, I don’t usually pay much attention to that once I’m stable. But I don’t know. Yesterday I was really excited to see that zero number on paper.
So what’s going on? Why is my bone marrow so inelastic now?
It’s the Revlimid, right? Partially, of course. But both of my docs–Dr. Malhotra, my medical oncologist, and Dr. Alsina, my myeloma specialist–are concerned that my lagging white counts might be pointing to something more serious.
They are so concerned that both feel I should undergo a bone marrow biopsy (BMB) soon. Dr. Alsina mentioned that when I saw her briefly two weeks ago. And Dr. Malhotra came to the same, independent conclusion a few days later.
While speaking with Dr. Malhotra’s physician’s assistant (PA) Ann last week, she let slip what I know both docs suspect: MDS.
I’ll explain tomorrow.
Until then, feel good and keep smiling! Pat