Hi -
I am hoping you can offer some advice. I am newly diagnosed with having an M protein. The doctor said my M-spike was 0.30 and my IgG level is 1622. He has told me to just come back in 4 months for a checkup. He didn't recommend any other testing and I have been doing some research and it seems more testing is recommended. I am wondering if I should get a second opinion. This is all new to me and I'm very confused.
Also my white blood cell count is a little low (4.5) and I am B-12 deficient (taking shots).
Should I have a 2nd opinion at these levels of bloodwork or just wait another 4 months and see if anything changes? Any advice is appreciated.
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Re: Newly diagnosed as having the M protein
What kind of doctor is he/she?
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Newly diagnosed as having the M protein
Cindi,
Welcome to the forum!
As Little Monkey mentioned, it would be good to know what kind of a doctor you saw (GP, hematolgist, etc).
Do you know what the units of measure were for the M-spike? Was it g/dL? Do you know why you were tested for an M-spike and your immunoglobulins (IgG, etc) were measured in the first place?
Regardless of what kind of doctor you saw you should definitely be getting some additional lab tests if an M-spike was detected. These tests would include:
In any case think it's always good to be seen by a myeloma specialist (which is not the same as a hematologist / oncologist which may only occasionally deal with multiple myeloma) when first getting diagnosed, regardless of what stage of a monoclonal gammopathy one has. If you let us know what city you are in, folks on this forum can make some recommendations on where to find these specialists.
Welcome to the forum!
As Little Monkey mentioned, it would be good to know what kind of a doctor you saw (GP, hematolgist, etc).
Do you know what the units of measure were for the M-spike? Was it g/dL? Do you know why you were tested for an M-spike and your immunoglobulins (IgG, etc) were measured in the first place?
Regardless of what kind of doctor you saw you should definitely be getting some additional lab tests if an M-spike was detected. These tests would include:
- Serum Immunofixation (if not already performed; if it was performed, do you know what it said?)
- Serum Free Light Chain Assay
- CBC, especially looking at your hemoglobin level.
- Comprehensive Metabolic Panel, especially looking at your creatinine and calcium levels.
- Beta 2 microglobulin
In any case think it's always good to be seen by a myeloma specialist (which is not the same as a hematologist / oncologist which may only occasionally deal with multiple myeloma) when first getting diagnosed, regardless of what stage of a monoclonal gammopathy one has. If you let us know what city you are in, folks on this forum can make some recommendations on where to find these specialists.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newly diagnosed as having the M protein
Hi -
I see a local hematologist in my town and I am unsure as to why they checked for the M-spike. I am thinking it was because I was very anemic in the past and had to have intravenous iron treatments. It seems my hemoglobin is better now and I'm not anemic.
I cannot answer any of the other questions that you ask. Right now I can only go by those levels that they told me which I put in the first post.
I live about a 1/2 hour from NY city. I have been put in touch with Dr. Suzanne Lentzsch who specializes in multiple myeloma at Columbia Presbyterian. I have to get my last blood test results and doctors notes to send to them and then I'm given an appointment. I feel very awkward getting a second opinion, but I am very uncomfortable knowing I have this M protein and knowing that it could possibly lead to cancer. I think instead of waiting 4 more months that I should probably see a specialist and make sure it's that MGUS right now and nothing more.
Are those numbers good or bad? The 0.30 M-spike and the higher IgG level?
I see a local hematologist in my town and I am unsure as to why they checked for the M-spike. I am thinking it was because I was very anemic in the past and had to have intravenous iron treatments. It seems my hemoglobin is better now and I'm not anemic.
I cannot answer any of the other questions that you ask. Right now I can only go by those levels that they told me which I put in the first post.
I live about a 1/2 hour from NY city. I have been put in touch with Dr. Suzanne Lentzsch who specializes in multiple myeloma at Columbia Presbyterian. I have to get my last blood test results and doctors notes to send to them and then I'm given an appointment. I feel very awkward getting a second opinion, but I am very uncomfortable knowing I have this M protein and knowing that it could possibly lead to cancer. I think instead of waiting 4 more months that I should probably see a specialist and make sure it's that MGUS right now and nothing more.
Are those numbers good or bad? The 0.30 M-spike and the higher IgG level?
Re: Newly diagnosed as having the M protein
And that you for the offer of multiple myeloma specialsts - if anyone knows of any in the NYC area please let me know.
Re: Newly diagnosed as having the M protein
Hello Cindi:
I think you have done a little bit of good research, and you are absolutely right that you probably have MGUS and unrelated anemia. However, you need to check it. For people with a low level of MGUS, the standard approach is to get the blood work drawn every six months and review with the hematologist / multiple myeloma specialist.
The most common form of multiple myeloma is M-spike dominated, and can be tracked predominately by the M-spike reading, but the doctor would look at other indicators, as well. That form of M-spike, in most cases, would transition to smoldering or active multiple myeloma something north of a 3.0 g/dL M-spike (in most, but not all cases), and it would very likely take you many, many years to reach that level, and possibly it never would reach that level.
Multiple myeloma, however, does come in the plain vanilla "flavor", but it is also very tricky. There is also the less common light chain, and nonsecretory forms, that are harder to track. Reason 1 why you should go to the specialist now.
Reason 2, since you have anemia already, that also makes tracking the disease progression more complicated, as anemia is one of the CRAB symptoms. In fact, as I have posted before, my wife had unrelated anemia, and MGUS. After many years, with the M Spike slowly rising, an anemia flare up occurred when the M-spike was about 3.4. In very short order, the M-spike shot up further, and the hemoglobin fell through the floor, and the multiple myeloma declared itself as active last year. So your anemia complicates the tracking process.
It also probably makes sense (discuss with your myeloma specialist) in your case to have a bone marrow biopsy. That is no fun, but I think that one would be every couple of years, and would help in the tracking, as its a more direct reading of the amount of multiple myeloma in the bone marrow.
Dr. Lentzch is well respected, and does only multiple myeloma. I am sure that the issues you raise are things she has dealt with before. A couple of other New York-area multiple myeloma specialists would be Dr. Niesvizky's team at Weill-Cornell, Dr. Jagannath's team at Mount Sinai, the Memorial Sloan-Kettering team, and if you are in New Jersey, Hackensack University Medical Center. All those programs are respected nationally.
Good luck to you, and I hope that it's low level, plain vanilla MGUS.
I think you have done a little bit of good research, and you are absolutely right that you probably have MGUS and unrelated anemia. However, you need to check it. For people with a low level of MGUS, the standard approach is to get the blood work drawn every six months and review with the hematologist / multiple myeloma specialist.
The most common form of multiple myeloma is M-spike dominated, and can be tracked predominately by the M-spike reading, but the doctor would look at other indicators, as well. That form of M-spike, in most cases, would transition to smoldering or active multiple myeloma something north of a 3.0 g/dL M-spike (in most, but not all cases), and it would very likely take you many, many years to reach that level, and possibly it never would reach that level.
Multiple myeloma, however, does come in the plain vanilla "flavor", but it is also very tricky. There is also the less common light chain, and nonsecretory forms, that are harder to track. Reason 1 why you should go to the specialist now.
Reason 2, since you have anemia already, that also makes tracking the disease progression more complicated, as anemia is one of the CRAB symptoms. In fact, as I have posted before, my wife had unrelated anemia, and MGUS. After many years, with the M Spike slowly rising, an anemia flare up occurred when the M-spike was about 3.4. In very short order, the M-spike shot up further, and the hemoglobin fell through the floor, and the multiple myeloma declared itself as active last year. So your anemia complicates the tracking process.
It also probably makes sense (discuss with your myeloma specialist) in your case to have a bone marrow biopsy. That is no fun, but I think that one would be every couple of years, and would help in the tracking, as its a more direct reading of the amount of multiple myeloma in the bone marrow.
Dr. Lentzch is well respected, and does only multiple myeloma. I am sure that the issues you raise are things she has dealt with before. A couple of other New York-area multiple myeloma specialists would be Dr. Niesvizky's team at Weill-Cornell, Dr. Jagannath's team at Mount Sinai, the Memorial Sloan-Kettering team, and if you are in New Jersey, Hackensack University Medical Center. All those programs are respected nationally.
Good luck to you, and I hope that it's low level, plain vanilla MGUS.
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JPC - Name: JPC
Re: Newly diagnosed as having the M protein
Hi:
About 2 weeks ago was the first I heard anything about an M protein. However, my hematologist said I have had this condition called MGUS for many years, but they neglected to tell me and have not recommended any additional testing besides blood work and a urine test. I have seen the hematologist for years because of pernicious anemia (which is under control) and low B12 (currently on injections once a week for a month and then once a month thereafter). I also have an underactive thryoid condition and am a type 2 diabetic.
I am very concerned about this abnormal protein and all the potential trouble that it can cause having this condition, as everyone knows. I have been doing my research.
My question is, do you think I should get a second opinion and some additional testing based on my current blood test results below?
I am considering going to Columbia Presbyterian to see a specialist on MGUS but am wondering if maybe, at this point in time, I shouldn't be so concerned and maybe a second opinion isn't necessary.
M Spike - 0.24 g/dL (back in December it was 0.30 and 1 year prior it was 0.24 again).
Serum Immunofixation Pattern Interpretation:
X0DOA \ IgG lambda paraprotein peak detected.
IgG Serum - 1394 (Back in December it was 1622).
IgM Serum - 149
IgA Serum - 297
Kappa Free Light Chain - 25.09 (says high).
Lambda Free Light Chain - 13.63
Kappa/Lambda Ratio - 1.84 (says high).
M Spike in Urine - Not detected.
Calcium - 9.9 (back in December 11.0)
Any thoughts are greatly appreciated because right now I am very confused and I must say quite scared. Would that 2nd opinion be a good idea at this point in time?
Thank you for your time.
Cindi
About 2 weeks ago was the first I heard anything about an M protein. However, my hematologist said I have had this condition called MGUS for many years, but they neglected to tell me and have not recommended any additional testing besides blood work and a urine test. I have seen the hematologist for years because of pernicious anemia (which is under control) and low B12 (currently on injections once a week for a month and then once a month thereafter). I also have an underactive thryoid condition and am a type 2 diabetic.
I am very concerned about this abnormal protein and all the potential trouble that it can cause having this condition, as everyone knows. I have been doing my research.
My question is, do you think I should get a second opinion and some additional testing based on my current blood test results below?
I am considering going to Columbia Presbyterian to see a specialist on MGUS but am wondering if maybe, at this point in time, I shouldn't be so concerned and maybe a second opinion isn't necessary.
M Spike - 0.24 g/dL (back in December it was 0.30 and 1 year prior it was 0.24 again).
Serum Immunofixation Pattern Interpretation:
X0DOA \ IgG lambda paraprotein peak detected.
IgG Serum - 1394 (Back in December it was 1622).
IgM Serum - 149
IgA Serum - 297
Kappa Free Light Chain - 25.09 (says high).
Lambda Free Light Chain - 13.63
Kappa/Lambda Ratio - 1.84 (says high).
M Spike in Urine - Not detected.
Calcium - 9.9 (back in December 11.0)
Any thoughts are greatly appreciated because right now I am very confused and I must say quite scared. Would that 2nd opinion be a good idea at this point in time?
Thank you for your time.
Cindi
Re: Newly diagnosed as having the M protein
Your kappa/lambda ratio is only very slightly higher than normal; it still would not hurt to see a doctor who specializes in myeloma, or at very least, a Hemotologist at a cancer centre; it sounds like your current Hemotologist's area of practice is disorders other than Hemo-cancers
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
8 posts
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