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Questions and discussion about smoldering myeloma (i.e., diagnosis, risk of progression, potential treatment, etc.)

Smoldering myeloma / MGUS with low WBC

by dishevelled on Sun Jun 02, 2013 10:49 pm

The specialist told me Friday that I have MGUS because I have 10-15% plasma cells and an m spike of 1.2. This confuses me because I thought that would make me smoldering.

The reason for this post is because I started getting really sick yesterday. I was up all night with a fever of 101 and pains shooting in my legs, headache and nausea. I just felt really bad. I went to the urgent car and the doctor found my WBC low. The doctor said it was also a lot lower than 6 months ago besides just being too low.

I am home now and wondering if my wbc could have anything to do with the MGUS / smoldering myeloma. Is this something to be concerned with?

dishevelled
Name: Heather Trimnell
Who do you know with myeloma?: me
When were you/they diagnosed?: 4/1/2011
Age at diagnosis: 36

Re: Smoldering myeloma / MGUS with low WBC

by terryl1 on Mon Jun 03, 2013 6:17 am

Hi, you should probably get a second opinion from a myeloma specialist. My myeloma was found due to a lower than normal WBC about two years ago. It progressively got lower and lower.

terryl1
Name: Terry
Who do you know with myeloma?: self
When were you/they diagnosed?: August 10, 2011
Age at diagnosis: 49

Re: Smoldering myeloma / MGUS with low WBC

by Dianem on Mon Jun 03, 2013 12:20 pm

Hi - I agree with Terry in getting a second opinion. In Nov of 2011 an M spike 1.5 was found during a routine blood test along with a WBC of 4. After BMA, scans, and 24 urine, was diagnosed with IG MGUS. Later I learned my WBC has been low for at least 7 years and dipped below 4. I thought for sure I had multiple myeloma with the high spike and low WBC.
My dr said a low WBC can be associated with all monoclonal disorders. I asked if there was anything to increase WBC and she said no.
MGUS is supposed to be symptomless, so if having symptoms best to get a second opinion. Diane

Dianem

Re: Smoldering myeloma / MGUS with low WBC

by vicki h on Mon Jun 03, 2013 1:39 pm

I have 10-15% and am MGUS as well..I find that whenever I am sick and they do a cbc my wbc is so low Dr. said it probaly drops which opens me up to the infection and when i get better it goes up to low normal again..hope you feel better soon..

vicki h

Re: Smoldering myeloma / MGUS with low WBC

by Dr. Adam Cohen on Thu Jun 06, 2013 10:44 pm

The current definition of MGUS requires <10% bone marrow plasma cells and an M-spike < 3 g/dL, so if your plasma cells are truly 10-15% and you do not have CRAB criteria (high calcium, renal failure, anemia, or bone lesions), then you would be categorized as having smoldering myeloma. Myeloma patients (including some with smoldering disease) can have leukopenia (low white blood cell count) and are often more prone to infections. Occasionally if the infections are recurrent and severe/life-threatening (e.g. sepsis, recurrent pneumonias), we will start anti-myeloma treatment even in the absence of classic CRAB symptoms, since the only way to correct the dysfunctional immune system is to treat the underlying myeloma that is causing it. It doesn't sound like this is the case here, and generally for smoldering patients with non-severe infections, treatment is just supportive care for the infections, including antibiotics if indicated, and close observation to make sure the myeloma isn't becoming more active. An opinion with a myeloma specialist is always a good idea.
Hope this is helpful.

Dr. Adam Cohen
Name: Adam D. Cohen, M.D.
Beacon Medical Advisor

Re: Smoldering myeloma / MGUS with low WBC

by kdboca on Fri Jun 07, 2013 10:51 pm

I am 10% and my m-spike varies from 1.2 to 1.5 g/dL. Moffitt classifies me as IgG Kappa SMM. Dana Farber classifies me as MGUS. I'm not sure a second (or even third) opinion is that helpful. There is no treatment at this stage, regardless, unless you might be in a clinical trial. I'd concur with Dr. Adam Cohen. Treat the problem. Find out what you can do to increase your WBC.

kdboca


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