I was diagnosed with MGUS in May of this year. I am 38 years old. It started with an allergist running tests because of repeat sinus infections. And then a rheumatologist running tests after I started seeing her for severe wrist and hand pains.
My test results are as listed below. Do they suggest that I am at a high risk of progressing to multiple myeloma?
October 2016
Immunoglobulin G 1807 (high) normal is 694-1618
January 2017
Immunoglobulin G 1830 (high)
Immunoglobulin A 81 (Low) Normal is 87-352
March 2017
M-spike 0.7 (high)
Immunoglobulin G 1862 (high)
Immunoglobulin A 76 (low)
April 2017
M-spike 1.3 (high)
Lambda light chain 30.3 (high) normal 5.7-26.3
May 2017
Skeletal scan - 1 spot on left femur
Bone marrow biopsy
5% lambda light chain restricted plasma cells
FISH came back insufficient (I'm not sure what that means)
Sorry for the long post but any feed back is appreciated.
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Barrows29 - Name: Dawn
- Who do you know with myeloma?: I have Smoldering Multiple Myeloma
- When were you/they diagnosed?: MGUS June 2017 SMM October 2018
- Age at diagnosis: 39
Re: Do I have a high risk of progression to myeloma?
Hi Dawn,
Welcome the forum.
There are different models for risk of MGUS progression out there from the Mayo Clinic, PETHEMA, etc. Some of the key risk factors that are used in the various models are the size of the M-spike (> 1.5 g/dL), involved/uninvolved free light chain (FLC) ratio (>8), genetics, immunoparesis, number of focal lesions, isotype (whether you are IgA or IgM-type MGUS versus IgG) , etc. They Mayo model is one of the easier models to use since it doesn't involve any specialized testing
You only included your lambda free light chain number and not your kappa number, so you can't figure your free light chain ratio from this post. However, you have IgG type MGUS, which is good. I'm assuming your M-spike is expressed in g/dL, so your M-spike if fairly low and under 1.5 g/dL, which is also good.
However, your IgA seems to be suppressed, which suggests immunoparesis. Immunoparesis somewhat increases your risk of progression and is defined as the suppression of one or more "uninvolved" immunoglobulins. In your case, your IgG is your "involved" immunoglobulin and your IgA and IgM are your "uninvolved" immunoglobulins.
Assuming your involved / uninvolved free light chain ratio (lambda / kappa) is under 8, you don't currently meet any of the risk factors according to the Mayo model. So that puts you in the low-risk category, at least according to the Mayo. See, for example, this presentation for more information on the Mayo model.
However, immunoparesis is also a separate risk factor, according to some studies.
But the real wild card here is in your statement: "Skeletal scan - 1 spot on left femur". What exactly did the radiology report say? Was this "spot" a myeloma-related focal or lytic lesion, and how large was it? Did the doctor suggest any follow-up PET/CT or MRI imaging?
Lastly, sometimes when they do a bone marrow biopsy, they can't capture enough of a sample with myeloma cells to do any genetic FISH tests. This happens from time to time since the disease isn't spread evenly throughout one's bone marrow. It's in fact a bit of the luck of the draw on whether one captures a sample with sufficient myeloma cells to make any meaningful genetic measurements. Did your doctor suggest getting re-tested?
Welcome the forum.
There are different models for risk of MGUS progression out there from the Mayo Clinic, PETHEMA, etc. Some of the key risk factors that are used in the various models are the size of the M-spike (> 1.5 g/dL), involved/uninvolved free light chain (FLC) ratio (>8), genetics, immunoparesis, number of focal lesions, isotype (whether you are IgA or IgM-type MGUS versus IgG) , etc. They Mayo model is one of the easier models to use since it doesn't involve any specialized testing
You only included your lambda free light chain number and not your kappa number, so you can't figure your free light chain ratio from this post. However, you have IgG type MGUS, which is good. I'm assuming your M-spike is expressed in g/dL, so your M-spike if fairly low and under 1.5 g/dL, which is also good.
However, your IgA seems to be suppressed, which suggests immunoparesis. Immunoparesis somewhat increases your risk of progression and is defined as the suppression of one or more "uninvolved" immunoglobulins. In your case, your IgG is your "involved" immunoglobulin and your IgA and IgM are your "uninvolved" immunoglobulins.
Assuming your involved / uninvolved free light chain ratio (lambda / kappa) is under 8, you don't currently meet any of the risk factors according to the Mayo model. So that puts you in the low-risk category, at least according to the Mayo. See, for example, this presentation for more information on the Mayo model.
However, immunoparesis is also a separate risk factor, according to some studies.
But the real wild card here is in your statement: "Skeletal scan - 1 spot on left femur". What exactly did the radiology report say? Was this "spot" a myeloma-related focal or lytic lesion, and how large was it? Did the doctor suggest any follow-up PET/CT or MRI imaging?
Lastly, sometimes when they do a bone marrow biopsy, they can't capture enough of a sample with myeloma cells to do any genetic FISH tests. This happens from time to time since the disease isn't spread evenly throughout one's bone marrow. It's in fact a bit of the luck of the draw on whether one captures a sample with sufficient myeloma cells to make any meaningful genetic measurements. Did your doctor suggest getting re-tested?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Do I have a high risk of progression to myeloma?
Thank you for the reply Multibilly,
My FLC ratio was in the normal range the last time they did it. I'm not sure the exact number right now. When my oncologist told me about the spot on my femur, he just said he is going to watch it closely because he didn't want me doing any more scans right now. I go back for more blood tests on June 20th and then see him on June 27th and I will have to ask him about the FISH test because that is the only part of the biopsy that wasn't back yet when I saw him last time.
I am a little worried about my M-spike going from 0.7 to 1.3 in a month. When I go back at the end of this month he is checking everything again and I'm a little scared since my M-spike almost doubled in a month and it has been almost 4 months since it has been checked.
I should add that my bone marrow biopsy also said I have absent stainable iron stores. And my red blood count and rdw on my blood test are as low as they can be and still be normal.
My FLC ratio was in the normal range the last time they did it. I'm not sure the exact number right now. When my oncologist told me about the spot on my femur, he just said he is going to watch it closely because he didn't want me doing any more scans right now. I go back for more blood tests on June 20th and then see him on June 27th and I will have to ask him about the FISH test because that is the only part of the biopsy that wasn't back yet when I saw him last time.
I am a little worried about my M-spike going from 0.7 to 1.3 in a month. When I go back at the end of this month he is checking everything again and I'm a little scared since my M-spike almost doubled in a month and it has been almost 4 months since it has been checked.
I should add that my bone marrow biopsy also said I have absent stainable iron stores. And my red blood count and rdw on my blood test are as low as they can be and still be normal.
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Barrows29 - Name: Dawn
- Who do you know with myeloma?: I have Smoldering Multiple Myeloma
- When were you/they diagnosed?: MGUS June 2017 SMM October 2018
- Age at diagnosis: 39
Re: Do I have a high risk of progression to myeloma?
Dawn,
Try not to fret about M-spike fluctuations like the one you've experienced until you know a trend has developed over several lab tests. In other words, one data point does not a trend make.
If you look at my smoldering M-spike history here, you can see that it's pretty normal for an M-spike to bounce around quite a bit. According to my doctor, these kinds of fluctuations tend to be a bit more pronounced with MGUS and smoldering patients.
Try not to fret about M-spike fluctuations like the one you've experienced until you know a trend has developed over several lab tests. In other words, one data point does not a trend make.
If you look at my smoldering M-spike history here, you can see that it's pretty normal for an M-spike to bounce around quite a bit. According to my doctor, these kinds of fluctuations tend to be a bit more pronounced with MGUS and smoldering patients.
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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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