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Lymphoplasmacytic Lymphoma that is not WM?

Blood Cancers & Disorders | Last Active: May 4 12:25pm | Replies (38)

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@jerry48 Hi Jerry thanks for your reply. It is a relief to finally find others with similar symptoms and condition, however I am sorry you all have this condition. Anna has a very steady IgG level in UK figures 16 to 19 g/l, however her kappa free light chains have been steadily rising from around 50mg/l now to around 90mg/l, kappa lambda ratio now over 25 if I remember. Her symptoms suddenly got a lot when the FLC rose above 65. We have suggested that hers is probably light chain driven as this seems to be the active element but we struggle to get them to even check them. NCS/EMG is normal for Anna. We both really hope treatment works for you, let us all know how it goes. Thanks again for your reply.

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Replies to "@jerry48 Hi Jerry thanks for your reply. It is a relief to finally find others with..."

@jonyb
My kappa Light Chains were @ 400 initially. One month after my initial treatment with Rituximab and Bendamustine the level dropped to 100. Now, one month after my second infusions LC are down to 45. I have a return of almost normal plantar muscle strength in my left foot, getting a little better in the right. Numbness persists but sensitivity to cold has improved.
Meds tolerated well. Obviously I am feeling encouraged. No longer having any leg pain.
To summarize my diagnosis is LPL that is not MD, Other than some mild anemia, Kappa light chain elevation the only abnormality in blood work.