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Matt's Story

Subject: My latest test results

I received my latest test results.   By way of background, I was first diagnosed with Waldenstrom's disease in 1997.  At that time, my IgM was about 950 and my hemoglobin had dropped from my normal baseline (15.1) down to 12.  Between 1997 and March of 1999, my IgM rose rapidly to about 5,200, and my hemoglobin dropped down to 8.0.  In addition, I developed a constant hacking cough, and my fatigue was extremely difficult to deal with.  In short, by that time, I was very sick.

I was being followed at the Long Island Jewish Medical Center  (LIJ), in New York by an oncology group which was extremely experienced in the treatment of chronic lymphocytic leukemia (CLL).  This was of some significance, because CLL has certain things in common with Waldenstrom's disease. At that time at LIJ, , a clinical trial had just begun of treating CLL patients with Fludarabine and Rituxan,  and it had begun to show some remarkably good results. Because I was very sick at the time, (March, 1999)   my oncologist suggested that I try Fludarabine and Rituxan to treat the Waldenstrom's disease.  However, because it appeared that no Waldenstrom's patients had ever been treated with that combination,  it was difficult for me to make the decision to proceed with it.

I called all the major Waldenstrom's experts at the time,  as well as the doctors who had conducted clinical trials of Rituxan  (which had only recently been approved).  Some had told me that the combination could destroy my immune system, while others told me to proceed.  Since, I had absolutely no data to go on,  it was a difficult decision,  but I decided to proceed.   For good measure, I also sent a sample of my cells to Dr. Robert Nagourney, of "Rational Therapeutics".  His lab analyzes the effectiveness of various chemo treatments against particular malignancies. While his technique could not analyze the effects that Rituxan might have,  he nevertheless found that it would be "synergistic" with the Fludarabine which he found would be more effective for me than 2CDA.  He found that the combination of Fludarabine and Rituxan would probably work best for me. 

In any event, I proceeded with two one week courses of the Fludarabine and Rituxan.  I took the first course in March of 1999 and the second one a few weeks later.   I then followed up with a four week course of Rituxan alone in August and September of 1999.  Since that time,  I have had no treatment whatsoever,  and, for the past three years, have had blood and IgM readings within the "normal range.   My latest test results (taken November 11th and December 2nd), are as follows:

Hemoglobin:   14.6
IgM:               57
                     White Count:    5.6
                     Platelets:    148,000
                     Serum Protein Electrophoresis:   ("Negative for
Monoclonal Band")
                     Immunofixation:   "No Monoclonal Immunoglobulins Detected"

Since I know that many of you want to have "long term" (if 3 years is considered "long term")  data concerning  treatment with Fludarabine and Rituxan,  I  am forwarding  my history with these results.   I  pray that these results continue, and that we can  all regain our health and defeat this disease once and for all.
                                                                           
           --Matt--


 

 
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