I am trying to decide if the doctor has the right diagnoses with MGUS because it is 2 years later and my blood counts have been dropping. Now I have neutropenia, low WBC and platelets, with high lymphocyte %. These CBC with diff numbers are up to 50% less than what they were 2 years ago in some cases.. The doctor told me that this has nothing to do with MGUS or cancer.
My numbers are at present:
Neutrophils - 1090
WBC - 3
Platelets - 168
Lymphocyte % - 55
Beta 2 microglobulin - 2,8
M-spike - 3.3
IgA lambda free light chain 2.7
IgA kappa free light chain 2.93
Then yesterday they found a new nodule in my breast that wasn't there 6 months ago, so I am wondering why my blood work keeps going down. Is there another form of cancer besides multiple myeloma that I may have?
Am I just paranoid for nothing?
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Re: Is it really MGUS? (Neutropenia, low WBC & platelets)
Hi Bev,
Welcome to the forum.
What are the units of measure for your M-spike? Are they in g/dL?
Do you know what your IgA, IgG, IgM, hemoglobin, creatinine and calcium levels are? Please include units of measure and any reference ranges.
Mild neutropenia (which is what you have) can definitely occur at the time of a diagnosis of plasma cell disorder diagnosis and before any treatment. More severe neutropenia usually occurs during or after treatment.
http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/hematology-oncology/multiple-myeloma/
"Mild neutropenia and mild thrombocytopenia are common [in multiple myeloma patients], but severe cytopenias are uncommon at diagnosis."
Welcome to the forum.
What are the units of measure for your M-spike? Are they in g/dL?
Do you know what your IgA, IgG, IgM, hemoglobin, creatinine and calcium levels are? Please include units of measure and any reference ranges.
Mild neutropenia (which is what you have) can definitely occur at the time of a diagnosis of plasma cell disorder diagnosis and before any treatment. More severe neutropenia usually occurs during or after treatment.
http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/hematology-oncology/multiple-myeloma/
"Mild neutropenia and mild thrombocytopenia are common [in multiple myeloma patients], but severe cytopenias are uncommon at diagnosis."
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Is it really MGUS? (Neutropenia, low WBC & platelets)
Sorry Multibilly,
What I am concerned with is if my blood disorders are because of lymphoma or leukemia as opposed to MGUS. Couldn't they be or not?
I read that all these markers show up in various cancers such as breast, kidney, liver, etc. I had a lesion on my rib when they first found these markers that they found with a dual energy machine, and then they took an xray a month later and it was not there. Now I have a nodule on my breast that they are trying to determine what it is and my lymph nodes have hurt under my arm pits, but because I am overweight with large breast it is hard to tell if they are enlarged. Quite frankly, my MGUS doctor doesn't seem concerned about my lymph nodes enough to even look when I tell him this.
What concerns me also is the total decline of WBC, neutrophils and platelets over the 2 years (up to 50% of what they were). Does this mean I am progressing into smoldering or regular myeloma?
Do I need another doctor or am I paranoid?
I was diagnosed in September 2014
SPE M-Spike 1 % - 3.3 %
SPE M-Spike 1 - 0.25 g/dL
IgG - 1310 mg/dL (588 - 1573 mg/dL)
IgM - 217 mg/dL (57 - 237 mg/dL)
IgA - 200 mg/dL (46 - 287 mg/dL)
IgE - 16 IU/mL (4 - 269 IU/mL)
Ig Free Light Chain Kappa - 2.30 mg/dl 0(.33 - 1.94 mg/dl)
Ig Free Light Chain Lambda - 1.82 mg/dl (0.57 - 2.63 mg/dl)
Ig FLC Kappa/Lambda Ratio - 1.26 (0.26 - 1.65)
Calcium - 9.0 mg/dL (8.7 - 10.2 mg/dL)
Neutrophil % - 31
Neutrophil count - 1.1
Total Protein - 8.0
Hemoglobin is fine
Creatinine is fine
What I am concerned with is if my blood disorders are because of lymphoma or leukemia as opposed to MGUS. Couldn't they be or not?
I read that all these markers show up in various cancers such as breast, kidney, liver, etc. I had a lesion on my rib when they first found these markers that they found with a dual energy machine, and then they took an xray a month later and it was not there. Now I have a nodule on my breast that they are trying to determine what it is and my lymph nodes have hurt under my arm pits, but because I am overweight with large breast it is hard to tell if they are enlarged. Quite frankly, my MGUS doctor doesn't seem concerned about my lymph nodes enough to even look when I tell him this.
What concerns me also is the total decline of WBC, neutrophils and platelets over the 2 years (up to 50% of what they were). Does this mean I am progressing into smoldering or regular myeloma?
Do I need another doctor or am I paranoid?
I was diagnosed in September 2014
SPE M-Spike 1 % - 3.3 %
SPE M-Spike 1 - 0.25 g/dL
IgG - 1310 mg/dL (588 - 1573 mg/dL)
IgM - 217 mg/dL (57 - 237 mg/dL)
IgA - 200 mg/dL (46 - 287 mg/dL)
IgE - 16 IU/mL (4 - 269 IU/mL)
Ig Free Light Chain Kappa - 2.30 mg/dl 0(.33 - 1.94 mg/dl)
Ig Free Light Chain Lambda - 1.82 mg/dl (0.57 - 2.63 mg/dl)
Ig FLC Kappa/Lambda Ratio - 1.26 (0.26 - 1.65)
Calcium - 9.0 mg/dL (8.7 - 10.2 mg/dL)
Neutrophil % - 31
Neutrophil count - 1.1
Total Protein - 8.0
Hemoglobin is fine
Creatinine is fine
Re: Is it really MGUS? (Neutropenia, low WBC & platelets)
Hi Bev,
According to my oncologist, WBC and neutrophil counts are not good and reliable indicators of disease progression for MGUS and smoldering multiple myeloma patients (in fact, I am smoldering, and my WBC and neutrophil markers look just fine).
Your M-spike and free light chain markers are consistent with very mild MGUS. Also, all of your immunoglobulin levels are at very respectable levels and the blood markers for potential CRAB symptoms (hemoglobin, creatinine and calcium) all look great.
But you've got an elevated beta2 microglobulin level, which can indicate cancer tumor burden, and a low WBC and neutrophil level. There may be some other conditions that could explain your overall mix of markers, but you really need to get that sorted out by a good hematologist / oncologist.
If I were you, I'd seek out a hematologist / oncologist that specializes in multiple myeloma to try to get to the bottom of this. If you let us know what city you are in, folks on this forum can make some recommendations.
According to my oncologist, WBC and neutrophil counts are not good and reliable indicators of disease progression for MGUS and smoldering multiple myeloma patients (in fact, I am smoldering, and my WBC and neutrophil markers look just fine).
Your M-spike and free light chain markers are consistent with very mild MGUS. Also, all of your immunoglobulin levels are at very respectable levels and the blood markers for potential CRAB symptoms (hemoglobin, creatinine and calcium) all look great.
But you've got an elevated beta2 microglobulin level, which can indicate cancer tumor burden, and a low WBC and neutrophil level. There may be some other conditions that could explain your overall mix of markers, but you really need to get that sorted out by a good hematologist / oncologist.
If I were you, I'd seek out a hematologist / oncologist that specializes in multiple myeloma to try to get to the bottom of this. If you let us know what city you are in, folks on this forum can make some recommendations.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Is it really MGUS? (Neutropenia, low WBC & platelets)
I am in the Raleigh-Durham-Chapel Hill area of North Carolina.
Re: Is it really MGUS? (Neutropenia, low WBC & platelets)
There are myeloma specialists at both UNC-Chapel Hill and at Duke.
Re: Is it really MGUS? (Neutropenia, low WBC & platelets)
Terry provided some good guidance on nearby specialists. Note that Dr. Peter Voorhees at UNC is a well-respected specialist and a regular contributor to this forum. But there are also other good specialists at those facilities.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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