Thursday, February 8, 2007

Is this the old-man's cancer?

July notes from Beth Isreal Hospital:
" . . . .spleen not enlarged. bone marrow aspirate and biopsy revealed focal scattered lymphoid aggregates. She did have increased fine fibrosis associated with lymphoid infiltrates. Immunophenotyping revealed a small clonal B-cell population that expressed CD5, CD23, and dim CD20. The cells were ZAP-70 positive but CD38 negative."
White Blood Count: 13,700
Hematocrit: 34.2
MCV: 93
Neutrophils, 11
Platelet count: 284,000
Reticulocyte count: 3.3%
IgG: 634; IgM: 259; IgA: 47

WBC present in normal numbers; occasional hypersegmented neutrophils.
Platelets present in normal number and normal appearance.

Treatment has been for the AIHA: 80 mgs prednisone daily titrating over the last two months to 20 mgs (current) and a goal of 10 mgs. Further the report notes: "If she cannot be tapered below 30 mgs because of ongoing hemolysis, I would consider the addition of Rituxan."

Who knew that withdrawal from the prednisone would be so horrid. And keep me down all summer long. By the time I got to 20 mgs/day, I felt like myself: I had energy to be up and doing stuff although I didn't work through July, August and half of September. I simply snoozed the summer away: no energy; dizzy; light-headed; head-ache; nauseous. intestinal distress.

Are there questions I should be asking that I haven't? What is important for me to know and understand right now. There is so much information and it is difficult to know where to begin. I have read David Arenson's 's blog ( and am trying to follow his advice to use watch and wait as a time to learn.

My blood was monitored weekly through a CBC (complete blood count) and I had weekly appointments with the hematologist/oncologist Throughout July, August, September and October. Each week, he reviewed blood reports and prescribed little reductions in the prednisone. Each reduction in medication brought with it a new set of side-effects as my body "withdrew" from the prednisone. But there was, at the same time, slow but steady improvement in moving away from the anemia. For example:
2 months before CLL diagnosis: Hemoglobin, 13; Hematocrit, 36.9
At hospitalization for anemia: Hemoglobin, 6; Hematocrit, 16
CBC end of July: Hemoglobin, 10; Hematocrit, 31.
CBC end of August: Hemoglobin, 11; Hematocrit, 33.
End of September: Hemoglobin; 11; Hematocrit, 31

Most days I was only up for only a few hours . Often, I would have a little surge of energy between late afternoon and early evening. "Yes, that's prednisone", my doctors would assure me when I complained about the snoozing etc. Our home is near the ocean; our house has a small screened-in porch at the back and there I spent most of my awake time there, reading, looking at fiber art magazines.

Is it really the Old Man's Disease?

Is it really as "good" as Dr. M. portrays?

"There is nothing the body suffers that the soul may not profit by."
(George Meredith, British write & poet, 1828-1909)

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