As most of you know, approximately 80+% of SCLS "members" have an MGUS which is sometimes a forwarning of Multiple Myloma, HIV, Hepititus or a few other not so pleasant diseases. My doctor tracks changes in my MGUS on a periodic basis since an increase in the gamma gobulin marker is a sign of progression of the disease (such as Multiple Myloma). If you are unfamilar with MM, check out the Wikipedia site under the same name. My question is, has anyone with the MGUS heard any new information regarding the connection to SCLS and/or tracked their changes in the MGUS and would like to share their doctors' discussion with the rest of us? I have been getting skeletal surveys, calcium blood tests and bone marrow tests in the last two to three years and looks like I get another round of these soon, hence my question. Gene

MGUS indicates monoclonal gammopathy of undetermined significance. This is an anomaly of a laboratory result for the patient without symptom and it is common (> 5%) among those over 70 years. The discovery of an abnormal but low level (<15g/liter) of an immunoglobulin produced by a population of plasma cells derived from the same initial cell and having the potential to develop into cancer (multiple myeloma) should be monitored. The risk of malignant transformation is about 2% / year. This rate seems insignificant; but accumulated over 10 years it raises almost to 20% after 10 years and it can reach 35% after 20 years. A MGUS is present in 80% patients with SCLS. We do not know precisely the relationship between MGUS and SCLS. But this association speaks for an immunological pathophysiology of SCLS. Monitoring of MGUS should be regular after a diagnosis of SCLS. If the level of the paraprotein is stable for several years, an annual control would be adequate. The appearance of new symptoms (fatigue, bone pain), an hematologic abnormality (anemia) or chemical (hypercalcemia, proteinuria) should actively seek multiple myeloma. In my case, the level of IgG on the 30th day after IVIG is stable at 12 g/liter for 9 years. I check my total IgG, kappa chains and ratio kappa/lambda once every year. Claude Pfefferlé (cn.pfefferle@bluewin.ch)