A Mixed Report

The eight weeks on the protocol I followed from the University of Washington researcher are now over. The results are mixed.

Initially when I began this protocol, I had a few weeks where my lymph nodes enlarged quite alot, however, they have reduced to a bit smaller than when I began this protocol. Since one of these drugs is considered to be an immunomodulating drug, we were always curious if it caused a mild case of tumor flare, as many using Revlimid (drug being recommended for me to use by my Ohio State oncologist) experience.

I did not notice any change in my very enlarged spleen. This had been my main hope that the spleen would shrink as it causes me such pain and discomfort. My spleen is misplacing many of my internal organs in the abdominal cavity. It prevents me from eating an entire meal and I have now lost over 50 pounds.

At the beginning of this trial, my white count was 92,700 (normal being around 5000). Yesterday it was 49,500. So that is almost a 50% reduction in the WBC, although it remains quite elevated. The WBC did drop as low as 37,000 but then I had an infection and had IV steroids with IVIG, so those events increased the WBC as they always do.

I normally always have 99% lymphocytes and 1% neutrophils. My differential yesterday was 90% lymphocytes (normal being 13-43%), 7% neutrophils, 1% monocytes, and 2% eosinophils. It has been sometime since I have had monocytes and eosinophils even show up on my differential. The cancerous cell line is the lymphocytes, thus the very high percentage of lymphocytes.

My hemoglobin was 8.0 (normal 12-16) when I began this treatment. Today it was 10.6.

The main count that I am concerned about is my platelets. They were 114,000 when I began this protocol and they were 68,000 (normal is 130,000 to 400,000) yesterday.

I heard from the University of Washington researcher this evening and he believes maybe I should try another 8 weeks of this protocol. Please keep us in your prayers as I make the next decisions as how I should best proceed.