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bluelue 03-03-2012 08:40 PM

Follicular Lymphoma
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?

Nassau one 03-06-2012 10:29 AM

Re: Follicular Lymphoma
I am so sorry to hear about your diagnosis. I understand how scary it is, especially when you are young and have young children. The first step is to find out where else the lymphoma might be and then decisions can be made as to whether treatment at this point is necessary or not. Even with Stage 1V, treatment is not always recommended immediately but you would be regularly monitored to watch the nodes. Be encouraged that new treatments are being found all the time and it is likely that even indolent lymphomas, whilst currently considered incurable though very treatable, will be able to be cured sometime in the future.

It is not easy to come to terms with any serious illness but time does help. None of us know how long we have to live so each day is a blessing. Once you know exactly what you are dealing with, it will probably be easier to accept it. Do let us know how the tests go and what decisions you make. We are here to support you as much as possible.

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