[pinball]

Re: High Risk SMM, MGBS or MGUS ???

by pinball on Thu May 15, 2014 2:01 pm

I understand your concern "Dana H" as i've recently undergone extensive studies which the results are still trickling in and my case is being presented to a full board / conference & while I am clearly not active multiple myeloma , my plasma cell total count has doubled since last July (2013) to 10% total PC count and positive Bence-Jones proteinuria (160g total protein in urine, little low Albumin, hi Globuilin).

Based on the 10% PC count i've been informed on paper yes I'm SMM and will get a full diagnosis soon - any day. The Bence-Jones findind and fact that a report just arrived that 91% of plasma cells are aberrant (biopsy 2 weeks ago) - I was really hoping the % of aberrant PC's would be on the low side (none were found last July) and also that BJ protein would not be present / excessive protein in urine. I have slight hemoglobin level 13.3 (not sure of the measurement).

Like yours my M spike is steady for near a year - around .400 g/dL IgG K . All other rests are normal (which includes tons of chromosonal testing - IGH/CCND1/MYEOV , CKS1B , TP53 etc - all are Negative which i take it is a good sign) .

I'm a little anxious to review the final results but that will be soon and this site is helpful to understand a bit more of this complex disease. I'm so thankful i'm healthy at this moment and perhaps the upward trend (PC %) will remain steady until there are more treatment options or even never progress (I'm in my early 40's so i'm sure some day i will face active multiple myeloma but perhaps gene therapy may be avail).

Anyway, reading this thread - it was so similar to exactly the items i was questioning - hope all is going well and it's amazing how much i've learned in the past weeks and will continue to learn.