Wednesday, May 28, 2008

The Word from Mayo

Dr. Tim Call telephoned me yesterday from Mayo Clinic to say that the initial diagnosis of CLL/SLL was, indeed, correct. He had been thinking that perhaps it might be "Mantle Cell Lymphoma," but further analysis of the biopsied nodes by pathologists at Mayo Clinic confirmed the original diagnosis.

Nancy is disappointed. She was thinking that the other, being more treatable, would be a better finding. But I am not. The reading I had been doing about Rituxin, as a treatment didn't thrill me. Contemplation of the side effects (nausea, chills, diarrhea) and the severely negative consequences of the treatment in a small percentage of recipients (rash, sores, death) was not a comfort to me.

Rituxin, also called Rituximab, is what is called a monoclonal antibody (anything with "mab" at the end of its name is a monoclonal antibody), and a substantial part of it is made from mouse cells. Consequently, many of the negative reactions that people have to it are a sort of rejection, much the same as a body rejecting a transplanted heart or the wrong kind of blood after a transfusion. The whole nine yards about Rituxin can be found at a wonderful Web site http://www.clltopics.org/, and type "rituximab" into the search box there.

Dr. Call was recommending a Rituximab treatment as a way to shrink the tissues in my throat that have been causing my sleep problems. But I think I will hold off as long as possible. I seem to have settled on a way to get sleep, largely by propping myself into a sitting position in bed. It definitely has helped, although it remains to be seen how long that strategy will work. It's conceivable that swelling will continue little by little until something must be done. If so, I'll address that problem when and if it happens. Dr. Call said there was no other pressing reason to try the Rituximab now except to gain relief for sleeping, so I think it's O.K. to do nothing for a while. Maybe I'll get lucky and never need to anything. Or I can consider surgery at that time, also, to carve away excess tissue---sort of a face lift, but inside where nobody would see it!

Meanwhile, losing ten pounds would probably remove some tissue, too!

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