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CLL America from Patient Power
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Diagnosed after an appointment for something else

I had a very painful night back in February, 16 with severe pain on my left side just below my rib cage.  Went to the doctor the next day to be checked out on the off chance that I had a heart condition.  My doctor had a CBC run that came back with, as she put it, "The highest lymphocyte count she had ever seen" (58,000), but otherwise normal.  I had a second CBC a couple of days later which had an even higher lymphocyte count (69,000) so my doctor referred me to a hematologist.  At the hematologist's suggestion I had a flow cytometry test run.  I got a call from the hematologist's office just before dinner on my 64th birthday telling me I had CLL.  That kind of messed up my birthday dinner.

I had my first appointment with the hematologist a week later during which I was formally diagnosed with Stage I CLL.  I had a bunch of blood tests ordered and CT scans ordered for a week later and a follow up appointment set for 4 weeks.  I got a call the afternoon of my blood work to give me the results.    My CBC a week later came back at 90,000, my platelets were down to 124, but my CT scans were unremarkable.  The hematologist did start me on a couple of drugs normally given before treatment.  Three weeks later I had another CBC just before my second visit with the hematologist.  Surprisingly my lymphocytes were back down to 57,000, but my platelets were down to 110 and my neutrophils were 1.5. My FISH and other blood work was back and my results were pretty positive (17% 13q-, mutated IgVH, ZAP70 and CD38 negative).  So my doctor set me up for monthly blood work and a follow up appointment in three months.  I had my first monthly CBC last Monday and my lymphocytes were still 58,000, but my platelets and neutrophils were back up in the normal range.  So I am waiting for next month, etc.

1 Reply

Hi Todd, thanks for sharing your story! It sounds like you are on the right track with monthly blood work and follow up appointments. Keep us posting on how you're doing and how we can support you! 


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