jmhow1

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About Me

Bio: I have lived with CTCL for over six years. I had it 3 years before I was diagnosed. They always say indolent...but it is not always that easy! Mine became agressive and spread to my lymph nodes. it took several different treatments to get it under control including chemo but still it never goes away and mine is coming back fast after a only 4 weeks of chemo for testing. The only way to stop the itching for me was that my doctor prescribed CYMBALTA(1 time a day) and Neurontin(3 times a day)for my pain!! This disease can be serious. Websites need to updated. it is hard to tell Mycosis from Sezary...most doctors familiar with it call it CTCL now. Get a good doctor/oncologist from a NCI designated hospital! thaat specializes in Lymphoma/CTCL!! wish you well.

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Member for: 48 weeks 4 days

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