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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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