I have a couple (3 I believe in the practice) of patients with this. It characterized by an abnormal group of plasma cells that produce the paraprotein, IgM. It can transform into a high grade lymphoma, worst case or it can be a smoldering disease, best case. Prognosis/staging is done using the amount of beta2 microglobulin, serum IgM concentration, and hgb. It is not a benign disease.
Our doctor said treatment is not indicated unless symptoms occur, hyperviscosity (one patient had strokes and was treated initially with plasmopheresis) B symptoms (fever sweats wgt loss) lymphadenopathy or hepatosplenomegly. Otherwise it is wait and watch we usually follow up every 4 months with B2M, SIEP, CBC, CMP and LDH. Can you tell I am training as his NP yet? LOL!
He has told me several times in patients with smoldering multiple myeloma, treating early is detrimental. I don't specifically know if this is true with Waldenstrom's but I suspect it is. The last thing I read was that there was no one treatment better than the other. The oncologist/hematologist I work with gave Rituxin and chlorambucil. The patient is doing great.
I think Velcade is a wonderful drug. We are having some success with myeloma patients using Velcade. I saw a patient Thursday whose SIEP was totally normal after treatment with Velcade, thalidomide, and prednisone