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Old 03-03-2012, 08:40 PM   #1
bluelue bluelue is offline
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Join Date: Mar 2012
Location: United States
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bluelue HB User
Follicular Lymphoma

Hello,
I was just diagnosed with follicular lymphoma on 3/1. During a regular physical my Dr. noticed prominent but not enlarged lymph nodes on my neck and clavicular region. After noting my labs showed a 10 year history of low platelets (range 89000-118000) and a gradual decrease of wbc's (range 2.9 to 3.5) she suggested to see a hem/onc dr. I told her confidently that this was my baseline and I was not worried about it. She insisted that I be seen by hem/onc.
Initially the hematologist told me that my lymph nodes were prominent because I am thin and that my blood count was indeed most likely my baseline. To be cautious however he ordered flow cytometry, revealing that I had a population of monoclonal b lymphocytes. Because a certain percentage of people have these cells as a benign condition I was not worried. I have always enjoyed good health and was not concerned. I agreed to a bone marrow biopsy, which I fully expected to be within normal limits. But the BMB revealed that the abnormal cells spread to my marrow and I was diagnosed with follicular lymphoma based on the BMB.
I am having CTs of the neck, chest, abdomen and pelvis next week to establish a baseline.
I know that this disease can take years to show symptoms and may not be a problem immediately, but I have three young children. I am scared. I don't fully understand what is happening.
Any suggestions on coping with a new diagnosis and living with uncertainty?