I've said a number of times on Marrowforums that one of the great ironies of MDS is that everything you do to make it better seems to first make it worse. A couple of weeks ago, I thought maybe I had dodged that bullet with the Campath trial.
But my labs at today (actually Tuesday) at NIH found my hemoglobin at 6.4 -- lower than it's been since diagnosis -- and we're only three weeks from my last transfusion. So I'm typing this on my laptop sitting in the Hematology Day Hospital on 3 South East South in NIH's Hatfield Building, getting two units of packed red blood cells.
You may recall that, two weeks ago, I had some too-good to-be-true lab results that pegged my Hgb at 9.7, among other positive results, raising my expectations of rapid response. But Dr. Matt Olnes said he did not believe today's results represent a case of near-immediate response followed by near immediate relapse. Thus far, no patient in the trial has responded that way, while most have seen a weakening in their counts prior to response. The median time to response for the Campath trial is 96 days. Olnes felt that, instead, those earlier counts from my local lab were indeed too good to be true.
So we are sucking down these RBCs and hoping for an early Spring.
My platelets are holding steady at 60, which continues to be a relief. But my Neutrophils have taken a dive to 870, their lowest performance to date. If they dip to 500, I'll be taking Cipro and watching what I eat much more carefully.
Hearkening back to my
"War in my Bone Marrow" description of the sort of MDS that responds to immunosuppressive therapy [IST], we have now stopped the war that had my T-cells attacking my bone marrow stem cells. Now my marrow, kind of like Iraq, is trying to get itself organized, prop up a government, and get things running smoothly again. I just hope my marrow doesn't take as long as the Iraqis to get the job done.
On a tragic note, Dr. Elaine Sloand, one of NIH's stalwarts on the MDS research front, died last week. Her husband died in early November. Though Dr. Olnes shared the news with me, he offered no details on cause of death. The staff was still visibly shaken by the loss of their colleague.
It is a great loss for the community of MDS sufferers as well. Though Dr. Sloand wasn't as visible in webinars and patient conferences as some other MDS experts, the work she was spearheading in the lab and in the clinic was breaking important new ground in teasing apart the strands of the tangle that is MDS.
Dr. Olnes said he and his colleagues planned to honor her memory by continuing her work. I wish them Godspeed in that effort.
He also reported that the
NIH Campath trial for MDS has been extended from the original complement of 43 patients to a total of 78, so more folks who feel IST might be the way to go in treating their MDS will have the opportunity to try this alternative to ATG.