Hello,
I was just diagnosed on May 6, 2015 with smoldering multiple myeloma IgM kappa with an M-spike above 50. I have had severe rib pain and low back pain.
I am trying to understand the diagnosis; do I already have cancer? What does an M-spike above 50 mean?
I am 43 years old.
Forums
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ahughes - Name: April
- Who do you know with myeloma?: me
- When were you/they diagnosed?: May 2015
- Age at diagnosis: 43
Re: Just diagnosed - smoldering multiple myeloma IgM kappa
Hi Ahughes,
Welcome to the forum. This is a great place for newly diagnosed patients.
Sorry to hear about this diagnosis.
Yes, smoldering multiple myeloma is considered to be "cancer" (this was the first question I asked my oncologist when I was initially diagnosed with smoldering multiple myeloma). The average risk of progression to active (symptomatic) multiple myeloma is about 10% / year in the first five years since the time of diagnosis. So, it's not a given that you will develop symptomatic multiple myeloma. It's also important to note that one typically does not treat smoldering multiple myeloma and instead simply periodically monitors the disease with various lab tests every few months.
Did you have a PET/CT or MRI of the areas where you are experiencing pain? What were the findings of those imaging tests? Were any lesions or bone destruction due to the myeloma indicated on the test results?
Do you know what your serum calcium level is?
Did you had a bone marrow biopsy and do you know your bone marrow plasma cell percentage?
Also, an M-spike of "50" doesn't really tell us anything without knowing what the units of measure are for that number. Whenever you post a lab value, please always include the units of measure, and the reference range (for those numbers that have reference ranges). This isn't obvious when you first start on this journey, since it's easy to assume that all labs use the same units of measure (they don't).
There are some other key lab values that will be good to know (lambda and kappa free light chains, creatinine and hemoglobin levels), but I think you need to get to the bottom of what is causing your bone pain first.
Welcome to the forum. This is a great place for newly diagnosed patients.
Sorry to hear about this diagnosis.
Yes, smoldering multiple myeloma is considered to be "cancer" (this was the first question I asked my oncologist when I was initially diagnosed with smoldering multiple myeloma). The average risk of progression to active (symptomatic) multiple myeloma is about 10% / year in the first five years since the time of diagnosis. So, it's not a given that you will develop symptomatic multiple myeloma. It's also important to note that one typically does not treat smoldering multiple myeloma and instead simply periodically monitors the disease with various lab tests every few months.
Did you have a PET/CT or MRI of the areas where you are experiencing pain? What were the findings of those imaging tests? Were any lesions or bone destruction due to the myeloma indicated on the test results?
Do you know what your serum calcium level is?
Did you had a bone marrow biopsy and do you know your bone marrow plasma cell percentage?
Also, an M-spike of "50" doesn't really tell us anything without knowing what the units of measure are for that number. Whenever you post a lab value, please always include the units of measure, and the reference range (for those numbers that have reference ranges). This isn't obvious when you first start on this journey, since it's easy to assume that all labs use the same units of measure (they don't).
There are some other key lab values that will be good to know (lambda and kappa free light chains, creatinine and hemoglobin levels), but I think you need to get to the bottom of what is causing your bone pain first.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Just diagnosed - smoldering multiple myeloma IgM kappa
Thank you for your response Multibilly. I had a negative bone survey. No bone marrow biopsy yet. Not 100% sure about how to read my blood work results, but my calcium mg/dl is 9.9.
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ahughes - Name: April
- Who do you know with myeloma?: me
- When were you/they diagnosed?: May 2015
- Age at diagnosis: 43
Re: Just diagnosed - smoldering multiple myeloma IgM kappa
I might suggest seeking out a multiple myeloma specialist that would run an MRI or PET/CT (which is the new standard for diagnosing smoldering multiple myeloma). Xrays simply aren't as good at picking up early lytic lesions, etc., that can be associated with a disease like smoldering multiple myeloma.
Also, note that IgM type smoldering multiple myeloma is quite rare. There are some other conditions associated with an IgM spike that could be in play, and which a myeloma specialist would best know how to track down or rule out.
If you let us know what city you are in, folks on this forum can make some recommendations on where to find these specialists that focus exclusively on multiple myeloma and know all the latest "ins-and-outs" of the disease.
Yeah, getting familiar with how to read your lab tests takes a while. They look overwhelming at first, but you will soon learn how to quickly read them.
Your calcium looks to be normal, which is good..
Once you find your M-spike with the value of "50", just look to see what the units are after it (g/dL, etc).
Your doctor hopefully also ran what is known as a quantified immunoglobulin test where he measured your actual IgM level (it will simply be listed as "IgM" somewhere on your results). It would be good to know that value too (again, with the units).
The kappa and lambda free light chain values should also appear somewhere on your test results that mention a "Free light chain assay" or "Freelite assay" (they are the only entries in your test results that have "kappa" and "lambda" in the name. The unites of these results also are important, as they often are different from one lab to another.
Hemoglobin might be called "HGB" or "HB" or something like that, and will show up on your CBC test.
Creatinine would show up on your metabolic panel test.
Hope this helps.
Also, note that IgM type smoldering multiple myeloma is quite rare. There are some other conditions associated with an IgM spike that could be in play, and which a myeloma specialist would best know how to track down or rule out.
If you let us know what city you are in, folks on this forum can make some recommendations on where to find these specialists that focus exclusively on multiple myeloma and know all the latest "ins-and-outs" of the disease.
Yeah, getting familiar with how to read your lab tests takes a while. They look overwhelming at first, but you will soon learn how to quickly read them.
Your calcium looks to be normal, which is good..
Once you find your M-spike with the value of "50", just look to see what the units are after it (g/dL, etc).
Your doctor hopefully also ran what is known as a quantified immunoglobulin test where he measured your actual IgM level (it will simply be listed as "IgM" somewhere on your results). It would be good to know that value too (again, with the units).
The kappa and lambda free light chain values should also appear somewhere on your test results that mention a "Free light chain assay" or "Freelite assay" (they are the only entries in your test results that have "kappa" and "lambda" in the name. The unites of these results also are important, as they often are different from one lab to another.
Hemoglobin might be called "HGB" or "HB" or something like that, and will show up on your CBC test.
Creatinine would show up on your metabolic panel test.
Hope this helps.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Just diagnosed - smoldering multiple myeloma IgM kappa
Hello again,
Sorry it took so long for a reply. Haven't been feeling well. My M-spike is 0.36 g/dl, my IgM serum mg/dl is 552.00, my ARG (albumin / globulin ratio ) is 0.9, which they marked as low. Red blood cells is 4.16 million / mm3, which is marked as low.
Sorry it took so long for a reply. Haven't been feeling well. My M-spike is 0.36 g/dl, my IgM serum mg/dl is 552.00, my ARG (albumin / globulin ratio ) is 0.9, which they marked as low. Red blood cells is 4.16 million / mm3, which is marked as low.
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ahughes - Name: April
- Who do you know with myeloma?: me
- When were you/they diagnosed?: May 2015
- Age at diagnosis: 43
Re: Just diagnosed - smoldering multiple myeloma IgM kappa
Ahughes,
Again, I'm not a doc, so please verify all this with a specialist.
IgM myeloma is very rare (only about 0.5% of all multiple myeloma cases are confirmed to be IgM-type multiple myeloma). If you have an elevated IgM-type M-spike, there are some other diseases that your doctor should be checking for. Are you working with a multiple myeloma specialist (not just an oncologist that might have some multiple myeloma patients in his/her practice)?
A low A/G ratio can signify the start of kidney problems, which can be associated with multiple myeloma and related diseases. And a low RBC count can signify anemia, which can also be associated with multiple myeloma and related diseases.
If you let us know what city your are in, folks on this forum can make recommendations on where to find multiple myeloma specialists in your area.
Again, I'm not a doc, so please verify all this with a specialist.
IgM myeloma is very rare (only about 0.5% of all multiple myeloma cases are confirmed to be IgM-type multiple myeloma). If you have an elevated IgM-type M-spike, there are some other diseases that your doctor should be checking for. Are you working with a multiple myeloma specialist (not just an oncologist that might have some multiple myeloma patients in his/her practice)?
A low A/G ratio can signify the start of kidney problems, which can be associated with multiple myeloma and related diseases. And a low RBC count can signify anemia, which can also be associated with multiple myeloma and related diseases.
If you let us know what city your are in, folks on this forum can make recommendations on where to find multiple myeloma specialists in your area.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Just diagnosed - smoldering multiple myeloma IgM kappa
Hello Multibilly,
I am in Columbiaville, Michigan. I have an appointment on June 10th (this Wednesday) at the University of Michigan hospital in Ann Arbor. But if anyone knows of a better place, please let me know.
I am in Columbiaville, Michigan. I have an appointment on June 10th (this Wednesday) at the University of Michigan hospital in Ann Arbor. But if anyone knows of a better place, please let me know.
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ahughes - Name: April
- Who do you know with myeloma?: me
- When were you/they diagnosed?: May 2015
- Age at diagnosis: 43
Re: Just diagnosed - smoldering multiple myeloma IgM kappa
Hello, I have more questions.
I just had a bone marrow biopsy done last week. First one since my smoldering multiple myeloma diagnosis last May. My oncologist / hematologist said my numbers from last blood work are all on an upscale.
My kappa / lambda free light chain ratio - serum is mg/dl 4.215 range is (0.260-1.650).
My IgM serum is 579.0 mg/dl the range is (40.0-280.0).
My calcium is mg/dl 10.4 range is (8.5-10.5).
Total protein is mg/dl 7.2 range is (6.2-8.2).
I have been reading about new myeloma defining events. Do my numbers seem ok to you?
I still haven't found a multiple myeloma specialist. My doctor said there is no reason to do a MRI or PET scan at this time. But I have had rib pain for over a year. Bone scan showed nothing.
I just had a bone marrow biopsy done last week. First one since my smoldering multiple myeloma diagnosis last May. My oncologist / hematologist said my numbers from last blood work are all on an upscale.
My kappa / lambda free light chain ratio - serum is mg/dl 4.215 range is (0.260-1.650).
My IgM serum is 579.0 mg/dl the range is (40.0-280.0).
My calcium is mg/dl 10.4 range is (8.5-10.5).
Total protein is mg/dl 7.2 range is (6.2-8.2).
I have been reading about new myeloma defining events. Do my numbers seem ok to you?
I still haven't found a multiple myeloma specialist. My doctor said there is no reason to do a MRI or PET scan at this time. But I have had rib pain for over a year. Bone scan showed nothing.
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ahughes - Name: April
- Who do you know with myeloma?: me
- When were you/they diagnosed?: May 2015
- Age at diagnosis: 43
Re: Just diagnosed - smoldering multiple myeloma IgM kappa
Hi ahughes,
These numbers fluctuate quite a bit. For example, my protein goes from being just above range to just within range from lab test to lab test, so it's difficult to know whether this is an upward trend in your numbers or just normal fluctuation.
As for the rib pain, I'm surprised that your regular doctor didn't see the need for an MRI or PET. I had rib pain off and on for only about 6 months when my regular oncologist decided that I needed an MRI to investigate further.
It turns out that is was not the result of lesions and is most likely costochrondritis. The rib pain comes back occasionally, but the majority of time there is no pain and my calcium numbers are normal. Your calcium level is still normal, so that's good. But the fact that this pain has persisted for a year warrants further investigation beyond a bone scan.
You should definitely find a specialist, though. He/she will be more up-to-date on the latest developments in treatment and will be better able to answer any questions you might have.
These numbers fluctuate quite a bit. For example, my protein goes from being just above range to just within range from lab test to lab test, so it's difficult to know whether this is an upward trend in your numbers or just normal fluctuation.
As for the rib pain, I'm surprised that your regular doctor didn't see the need for an MRI or PET. I had rib pain off and on for only about 6 months when my regular oncologist decided that I needed an MRI to investigate further.
It turns out that is was not the result of lesions and is most likely costochrondritis. The rib pain comes back occasionally, but the majority of time there is no pain and my calcium numbers are normal. Your calcium level is still normal, so that's good. But the fact that this pain has persisted for a year warrants further investigation beyond a bone scan.
You should definitely find a specialist, though. He/she will be more up-to-date on the latest developments in treatment and will be better able to answer any questions you might have.
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FingersCrossed - Name: FingersCrossed
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2014 (Smoldering)
- Age at diagnosis: 44
Re: Just diagnosed - smoldering multiple myeloma IgM kappa
Thank you for your reply. And I am still searching for a specialist.
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ahughes - Name: April
- Who do you know with myeloma?: me
- When were you/they diagnosed?: May 2015
- Age at diagnosis: 43
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