[Greg H]

The thing about cancer — and particularly a bone marrow failure disease — is the uncertainty.

I feel fine most of the time, except maybe the last week before I need a red blood cell transfusion, when I'm likely to be more fatigued and the pounding in my ears at night gets a bit louder. Those monthly transfusions are, in fact, about the only thing that reminds me I have cancer.

So it's not pain that mediates my disease, but lab reports. And the uncertainty about what the next report will reveal — and the anxiety of waiting — are the primary symptoms of my MDS.

I visited the National Institutes of Health last Tuesday for the six-month follow-up of the clinical trial in which I am enrolled. So far, I am a non-responder to Campath, meaning the numbers on various lab tests have failed to hit the marks that would qualify as a response.

Yet, as my fellow, the upbeat Dr. Dumitriu, amply demonstrated with his line graphs, all the key measurements of my blood counts — reticulocytes, red blood cells, white blood cells, platelets — are moving ever so slowly in the right direction. So, though he is not "enthusiastic" about my response, he is "optimistic" that I am headed in the right direction. A number of other folks in the Campath trial have been late bloomers, showing this same painfully slow improvement before achieving a durable response at the nine or twelve month mark.

Dr. Matt Olnes, the principal investigator on the trial, echoed Dumitriu's optimism and explained that this six month mark is a crossroads of sort: NIH could remove me from the trial, or I could remove myself. Neither of us proved ready for that. They believe I am a late bloomer; and I, hoping they are right, am very aware that there is, in fact, no particularly good alternative therapy for someone with my disease characteristics: lower-risk MDS with subnormal but not dangerously low platelet and white blood cell counts.

The other drugs I could try -- Vidaza, Dacogen, and Revlimid -- have all generated proven responses in only twenty-five percent or fewer lower-risk patients. All are "marrow-toxic" and risk lowering my counts into the danger zone before they start to help -- if they start to help. A stem cell transplant is also still too risky given my disease profile.

Dr. Olnes pointed out something that I had lost sight of: while I haven't hit the marks to qualify as a responder, all my counts are better than they were before I started the trial, except for my more frequent need for red blood cell transfusions.

So, that's the plan: we keep transfusing monthly as needed, and we wait.

Unless . . .

And that's where the uncertainty kicks back in. My six-month follow-up included a bone marrow biopsy, my first in nine months. And those results, if we found some new chromosomal abnormality, like a deletion of the long-arm of chromosome 5 or a missing chromosome 7, could radically alter our calculations, for better or for worse. And it's likely to be ten days before we know.

Meanwhile, I will feel just fine -- and, in an odd way, fortunate. Because, if dealing with uncertainty is the worst symptom of my disease, I am so much luckier than so many other folks with cancer.