Waldenstrom's Macroglobulinemia Community
Have you heard of Smoldering Waldenstrom's
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This patient support community is for discussions relating to Waldenstrom's Macroglobulinemia, non-Hodgkin lymphoma, monoclonal gammopathy of unknown significance (MGUS), multiple myeloma, and plasmapheresis.

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Have you heard of Smoldering Waldenstrom's

I went to an endocronologist for osteoperosis.  He took tests and one of them was the protein test.  It showed that I had an IGM of 500.  I had no idea what IGM was,  I was then sent to a hemotologist, oncologist and had.a 24 hour urine test, negative, bone survey , negative and the bone marrow aspiration and biopsy.  After a three week wait, he said I had Smoldering Waldentroms.  He didn't make much of it.  He said I will be watched withut treatment.  I have no symptoms.  In 4 months, I will have a blood test.  This is a new one for me.  If I didn't go to the endocronologist, I would never know anything was wrong.  If anyone else has been diagnosed with Smoldering Waldenstroms, please let me know what you know about it.---Arls516
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Here's an abstract on SWM:

http://www.uptodateonline.com/patients/content/abstract.do;jsessionid=7C93B464F300BDA5990B165434F8E937.1003;jsessionid=7C93B464F300BDA5990B165434F8E937.1003?topicKey=~kXkXubFTb2JN&refNum=9

"TI Smouldering Waldenstrom's macroglobulinemia: factors predicting evolution to symptomatic disease.  
AU Cesana C; Miqueleiz S; Bernuzzi P; Tresoldi E; Rossi V; D'avanzo G; Filippini D; Morra E  
SO Semin Oncol 2003 Apr;30(2):231-5.  
  
  Factors predicting evolution to symptomatic disease were investigated in 27 patients with smouldering Waldenstrom's macroglobulinemia (SWM) among 172 patients with Waldenstom's macroglobulinemia (WM), selected on the basis of the following criteria: (1) IgM paraprotein > 3 g/dL, and/or (2) bone marrow (BM) lymphoplasmacytoid (LPC) infiltration >or= 30%, and/or (3) diffuse infiltration pattern on BM biopsy, and (4) no treatment requirement for at least 12 months. Cumulative probability of survival was calculated by means of Kaplan-Meier. The Mantel and Haenszel test and multivariate Cox model were used to identify possible predictors for evolution. At a median follow-up of 79 months (range, 14 to 204), 11 patients (40.7%) showed progression to symptomatic disease, with the median interval from diagnosis being 46 months (range, 12 to 154). Event-free survival (EFS) at 5 and 10 years was 65% (95% confidence interval [CI], 45% to 85%) and 53% (95% CI, 31% to 75%), respectively. At multivariate analysis, paraprotein > 3 g/dL (hazard ratio [HR], 15.1; 95% CI, 3.01 to 75.64; P <.0009) and hemoglobin <or= 12.5 g/dL (HR, 3.75; 95% CI, 1.05 to 13.34; P <.042) independently predicted transformation into symptomatic disease (P  3 g/dL and hemoglobin levels <or= 12.5 gr/dL are likely to predict SWM transformation into active disease requiring treatment.  
  
AD Department of Hematology, Bone Marrow Transplantation Centre, Niguarda Ca' Granda Hospital, Milan, Italy.  
PMID 12720142"  

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I would like to point out that this article was published six years ago so the thinking on whether to intervene during the "smoldering" stage may have changed.  In multiple myeloma I believe that sometimes they DO intervene during this stage based on certain factors.  I would probably get a second opinion from someone at Dana Farber or MD Anderson, where they see plenty of Waldenstrom's patients.

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