[tanja]

MGUS or smoldering myeloma?

by tanja on Thu Sep 19, 2013 11:14 pm

I was diagnosed with MGUS at age 26. It was found incidentally when I had a massive DVT in my femoral area. At that time, I was not informed that MGUS could lead to multiple myeloma. I did not have a bone marrow biopsy at the time.

At age 36 I had bilat pulmonary embolisms at 5 weeks post c-section. Once again, they saw the monoclonal gammopathy. The hematologist did SPEP and multiple other labs, most of which were abnormal, and then ordered a BMB. My first BMB showed 20-30% abnormal plasma cells. I was told I had multiple myeloma.

I was sent to a multiple myeloma specialist and the tests were repeated. I was then told I had IgG lambda MGUS. I have had every test imaginable for evaluation. I have no bone lesions. I usually have an iron deficiency anemia. My latest BMB showed 20% abnormal plasma cells, m spike 2.0. I just finished almost 2 yrs of Zometa for borderline abnormal bone density.

My question is in this instance how do they determine MGUS vs smoldering myeloma?

Everything I have read makes the distinction between the two based on percent of abnormal plasma cells in BMB and M-spike. Can anybody clarify for me?

[dishevelled]

Re: MGUS or smoldering myeloma?

by dishevelled on Tue Oct 22, 2013 1:20 am

I recently returned from the Mayo clinic. My plasma cells are only at 15% and my m-spike is 1.7 g/dL My final diagnosis is smoldering myeloma t 4;14

It definitely sounds like smoldering myeloma as the criteria are >10% bone marrow plasma cells and OR >3 g/dL with no CRAB involvement.

I strongly urge you to get another opinion from a myeloma specialist. Especially if there is any confusion about your diagnosis. I was told I had multiple myeloma by a hem/onc then a specialist said MGUS then the Mayo Clinic's final decision was smoldering myeloma.

The first doctor was ready to start treatment and talking to me about a stem cell transplant. I feel pretty confident in my latest diagnosis.

It seems like these doctors are not all on the same page about diagnosing, treating and prognosis, which makes it really hard on the patient.

Good luck with everything. I feel for you.