The IMF Hotline 800-452-CURE (2873) is staffed by Nancy Baxter, Debbie Birns, and Paul Hewitt.
The phone lines are open Monday through Friday, 8am to 4pm (Pacific Time).
To submit your question online, please email TheIMF@myeloma.org.
Q: My brother was just told he has a very rare form of myeloma called IgM. I can't find anything on it and keep coming across discussions of something called "Waldenström's macroglobulinemia." Can you help?
A: You have raised a very interesting and complicated question. There is a specific disease called Waldenström's macroglobulinemia that is different from myeloma. What causes the confusion with myeloma is that Waldenström's macroglobulinemia also involves abnormal plasma cells and is characterized by excess monoclonal IgM proteins in the blood.
In Waldenström's macroglobulinemia, the abnormal plasma cells invade the bone marrow, lymph nodes, and spleen, and produce excessive amounts of IgM protein. The excess IgM in the blood causes hyperviscosity (thickening) of the blood. Waldenström's macroglobulinemia is actually considered to be a form of indolent lymphoma and not a form of myeloma.
We have listed the seven types of myeloma and the percent of cases they represent to give you an idea of how rare IgM myeloma is: IgG – 59%; IgA – 24%; Bence-Jones – 13%; non-secretory myeloma – 2%; IgD – 2%; IgM – less than 0.1%; IgE – less than 0.01%.
The Table should help you distinguish between the two diseases. These distinctions are general and, in fact, no one has completely agreed upon the precise criteria for the differences between IgM myeloma and Waldenström's macroglobulinem-ia.
What is most important to keep in mind is that usually the treatment and outcome for the extremely rare cases of IgM myeloma is essentially the same as that for the typical myeloma. However, in the unusual case where there are features of the IgM myeloma that are more like those of Waldenström's macroglobulinemia, then there may be additional treatment options available to those patients. For example, if the IgM patient happens to be CD20 positive, then Rituxan (rituximab) is an option. If there are other indicators of Waldenström's macroglobulinemia (see table above), then Fludara (fludaribine), and Cladrabine (2CdA) – which are normally not used in myeloma therapy – may be helpful to these patients.
For information on Waldenström's macroglobulinemia you can contact the International Waldenström's Macroglobulinemia Foundation (IWMF) at www.iwmf.com or by telephone at 941-927-4963. For information on myeloma, our educational materials (Patient Handbook and the Concise Review of the Disease and Treatment Options) will be applicable to IgM myeloma.
In addition, if your brother calls us here at the Hotline, we can put him in touch with several patients who have also been diagnosed with IgM myeloma.