Hi Everyone!
I'm new and I promise to go write my introduction but I was anxious to see if I might find some answers, first? I *think* I have smoldering multiple myeloma, but I'm actually not really sure. My hematologist / oncologist is a lovely man, but I'm not certain I understand exactly what he is telling me, and I don't want to sound like an idiot. Also, he says I shouldn't "worry" – that it is HIS job to worry. But, well, I'd worry less, I think, if I actually knew what I was up against. I mean REALLY up against.
(When I'm at my appointments, it's like all reason leaves me and I don't ask good questions, I'm so floored by this whole thing. In addition, English is my doctor's second language, so I don't always understand exactly what he is telling me. Not his fault, as I could keep asking questions until I get it, but for some reason I just don't. I feel just overwhelmed and am so hoping I can find more information here.)
This all started in May of 2014. Initially he told me I had MGUS, but then at a more recent appointment he said the diagnostic criterion had changed and that I had smoldering multiple myeloma. I am still a bit confused about all of this and really need some "interpretation."
My most recent labs look like this:
IgG 839 mg/dL
IgG free kappa light chain 6.28 mg/L
IgG free lambda light chain 763.87 mg/L
(Lambda is up from 580.34 mg/L in July of 2014, which concerns my doctor)
I have virtually no IgA (< 8 mg/dL)
IgM is within normal range.
I've had low white blood cells and low red blood cells but not *horribly* low.
I had a 24-hour urine test that confirmed protein in my urine.
In August of 2014 I had a bone marrow biopsy that showed monoclonal lambda plasmacytosis (5 - 10% by immunohistochemistry).
The report also indicated "positive for monosomy 13 (8%) and IGH rearrangement (5.5%). FISH was positive for loss of one copy of 13q14.3 and 13q34.
I have had x-rays of all my bones and no lesions were present. I also had a PET scan and it was clear.
So, I guess I'm wondering where I am on this continuum. What does it all mean? Any information would be so very much appreciated. Thank you!
Forums
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Pris - Name: Pris
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2017
- Age at diagnosis: 54
Re: Do my numbers indicate smoldering multiple myeloma?
Hi Pris,
Welcome to the forum.
It's great news that your PET/CT and xrays were clean.
Allow me to ask a couple of questions:
If you look at your serum protein electrophoresis test results, does it indicate an abnormal protein band, monoclonal protein, paraprotein, M-spike or some similarly labelled value? What is that value (including the units of measure)?
Could you share your hemoglobin and creatinine and calcium levels from your CBC and comprehensive metabolic panels (including units of measure)?
You have a pretty high lambda FLC value and your involved/uninvolved FLC ratio (lambda FLC/kappa FLC) is pretty high at 121. This technically qualifies as a Myeloma Defining Event (MDE), but doesn't necessarily mean that a multiple myeloma specialist would start treatment based on this fact alone. See:
https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/
You also appear to have a condition called immunoparesis, whereby one of your uninvolved immunoglobulins (in this case, your IgA) is suppressed.
Monosomy 13 is pretty common with MGUS patients and no negative prognostic implications have been associated with this genetic abnormality for smoldering multiple myeloma patients. See this article for in-depth discussion on this topic:
https://myelomabeacon.org/forum/great-new-article-on-cytogenetics-t6271.html
Given you have a pretty high FLC ratio and immunoparesis, I would strongly suggest seeking out a multiple myeloma specialist that is solely focused on multiple myeloma and related disorders (which is not the case with nearly all hematologists/oncologists). It might be good if you could also find a multiple myeloma specialist that you can understand and who will take the time to proactively explain things to you. If you let us know what city your are in, folks on this forum can offer up some recommendations as to where to find these kinds of specialists.
Lastly, please don't take my comments that any of this means you need to start treatment. I'm simply saying that it would make sense to get fully evaluated by a multiple myeloma specialist that lives and breathes this disease on a daily basis.
Welcome to the forum.
It's great news that your PET/CT and xrays were clean.
Allow me to ask a couple of questions:
If you look at your serum protein electrophoresis test results, does it indicate an abnormal protein band, monoclonal protein, paraprotein, M-spike or some similarly labelled value? What is that value (including the units of measure)?
Could you share your hemoglobin and creatinine and calcium levels from your CBC and comprehensive metabolic panels (including units of measure)?
You have a pretty high lambda FLC value and your involved/uninvolved FLC ratio (lambda FLC/kappa FLC) is pretty high at 121. This technically qualifies as a Myeloma Defining Event (MDE), but doesn't necessarily mean that a multiple myeloma specialist would start treatment based on this fact alone. See:
https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/
You also appear to have a condition called immunoparesis, whereby one of your uninvolved immunoglobulins (in this case, your IgA) is suppressed.
Monosomy 13 is pretty common with MGUS patients and no negative prognostic implications have been associated with this genetic abnormality for smoldering multiple myeloma patients. See this article for in-depth discussion on this topic:
https://myelomabeacon.org/forum/great-new-article-on-cytogenetics-t6271.html
Given you have a pretty high FLC ratio and immunoparesis, I would strongly suggest seeking out a multiple myeloma specialist that is solely focused on multiple myeloma and related disorders (which is not the case with nearly all hematologists/oncologists). It might be good if you could also find a multiple myeloma specialist that you can understand and who will take the time to proactively explain things to you. If you let us know what city your are in, folks on this forum can offer up some recommendations as to where to find these kinds of specialists.
Lastly, please don't take my comments that any of this means you need to start treatment. I'm simply saying that it would make sense to get fully evaluated by a multiple myeloma specialist that lives and breathes this disease on a daily basis.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Do my numbers indicate smoldering multiple myeloma?
Hi Multibilly!
Thank you SO much for your response. I've seen some of your other posts and you seem to really know a LOT about this. I'll answer your questions the best I can.
You wrote:
I can't find anything with this specific wording in my labs although that might be the IgG? That's at 839 mg/dL**
If I'm reading my numbers correctly, my hemoglobin is 12.8 g/dL, creatinine is 0.95 mg/dL, and calcium is 9.2 mg/dL.**
Thank you so much, Multibilly! I live in Phoenix, AZ. I really, really like my hematologist / oncologist, but it seems like we need every edge we can get, don't we? I so appreciate your help!
Pris
Thank you SO much for your response. I've seen some of your other posts and you seem to really know a LOT about this. I'll answer your questions the best I can.
You wrote:
If you look at your serum protein electrophoresis test results, does it indicate an abnormal protein band, monoclonal protein, paraprotein, M-spike or some similarly labelled value? What is that value (including the units of measure)?
I can't find anything with this specific wording in my labs although that might be the IgG? That's at 839 mg/dL**
Could you share your hemoglobin and creatinine and calcium levels from your CBC and comprehensive metabolic panels (including units of measure)?
If I'm reading my numbers correctly, my hemoglobin is 12.8 g/dL, creatinine is 0.95 mg/dL, and calcium is 9.2 mg/dL.**
Thank you so much, Multibilly! I live in Phoenix, AZ. I really, really like my hematologist / oncologist, but it seems like we need every edge we can get, don't we? I so appreciate your help!
Pris
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Pris - Name: Pris
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2017
- Age at diagnosis: 54
Re: Do my numbers indicate smoldering multiple myeloma?
Your IgG level is different from your M-spike, but can be related. In your case, your IgG level is the sum of your healthy IgG and your M-spike (assuming you have an M-spike). You may not have an M-spike since your IgG is leaning slightly towards the lower end of normal, but other things could also explain this situation. In any case, you should ask your doctor to be clear if you have an M-spike or not.
I'm not a doc, but your calcium and creatinine look fine, which is also great. Your hemoglobin is low, but not dangerously so. When your hemoglobin falls 2 g/dL under the normal lower limit, then you technically meet the anemia criteria in the myeloma CRAB criteria. So, you want to keep an eye on your RBC, hemoglobin, etc.
You can always keep your current hematologist for ongoing testing and only visit a multiple myeloma specialist from time to time or when your numbers really change (that's what I do). I might recommend the Mayo Clinic in Scottsdale. I've always been impressed with what I've read on the web from Dr. Mikhael, but others on this forum may have personal experience with the specialists there.
https://myelomabeacon.org/resources/treatment-centers/#Arizona
I'm not a doc, but your calcium and creatinine look fine, which is also great. Your hemoglobin is low, but not dangerously so. When your hemoglobin falls 2 g/dL under the normal lower limit, then you technically meet the anemia criteria in the myeloma CRAB criteria. So, you want to keep an eye on your RBC, hemoglobin, etc.
You can always keep your current hematologist for ongoing testing and only visit a multiple myeloma specialist from time to time or when your numbers really change (that's what I do). I might recommend the Mayo Clinic in Scottsdale. I've always been impressed with what I've read on the web from Dr. Mikhael, but others on this forum may have personal experience with the specialists there.
https://myelomabeacon.org/resources/treatment-centers/#Arizona
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Do my numbers indicate smoldering multiple myeloma?
Thank you again so much, Multibilly, for writing back to me! I've been so confused by all of this. Now I'm freaking out, but at least I have a better idea of what's what!
What is an M-spike? I'm not familiar with this term.
Thank you. I'm getting checked every three months right now.
Great idea! Thank you!
Pris
Your IgG is the sum of your healthy IgG and your M-spike (assuming you have an M-spike). You may not have an M-spike since your IgG is leaning slightly towards the lower end of normal. But you should ask your doctor about this to be clear if you have an M-spike or not.
What is an M-spike? I'm not familiar with this term.
I'm not a doc, but your calcium and creatinine look fine, which is also great. Your hemoglobin is low, but not dangerously so. When your hemoglobin falls 2 g/dL under the normal lower limit, then you technically meet the anemia criteria in the myeloma CRAB criteria. So, you want to keep an eye on your RBC, hemoglobin, etc.
Thank you. I'm getting checked every three months right now.
You can always keep your current hematologist for ongoing testing and only visit a multiple myeloma specialist from time to time or when your numbers really change (that's what I do). I might recommend the Mayo Clinic in Scottsdale ... I've always been impressed with what I've read on the web from Dr. Mikhael, but others on this forum may have personal experience with some of the other specialists there.
Great idea! Thank you!
Pris
-
Pris - Name: Pris
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2017
- Age at diagnosis: 54
Re: Do my numbers indicate smoldering multiple myeloma?
Hi Pris,
Most people with either multiple myeloma or smoldering multiple myeloma have what is known as an "M-spike". As Multibilly mentioned, it also has other names, including "abnormal protein band", "monoclonal protein level", and "paraprotein level". In the U.S., the units of the "M-spike" are usually g/dL, but you also sometimes see mg/dL.
The M-spike measures how much abnormal (monoclonal) protein the person's myeloma cells are producing. For myeloma patients who have an M-spike, the lab result is an important way to track how the patient's disease both before, during, and after treatment. The other set of lab results that play a similar role are the free light chain kappa, lambda, and kappa/lambda ratio results. In fact, for some myeloma patients, their disease can only be tracked with the free light chain lab results.
This recent forum posting by Cheryl G may help you understand better why the M-spike is useful for monitoring multiple myeloma.
Also, this post by Ian provides similar information, but from a slightly different perspective. It is useful for reinforcing some basic concepts related to multiple myeloma while also explaining different types of myeloma that have to be monitored in different ways. These distinctions may be more than theoretical in your case, as you may have the "light chain" variant of myeloma. That will depend on whether or not you have an M-spike.
I second, by the way, Multibilly's recommendation to get a consult at Mayo in Phoenix, if you can. There is a great group of myeloma specialists there, including Dr. Mikhael.
Good luck!
Most people with either multiple myeloma or smoldering multiple myeloma have what is known as an "M-spike". As Multibilly mentioned, it also has other names, including "abnormal protein band", "monoclonal protein level", and "paraprotein level". In the U.S., the units of the "M-spike" are usually g/dL, but you also sometimes see mg/dL.
The M-spike measures how much abnormal (monoclonal) protein the person's myeloma cells are producing. For myeloma patients who have an M-spike, the lab result is an important way to track how the patient's disease both before, during, and after treatment. The other set of lab results that play a similar role are the free light chain kappa, lambda, and kappa/lambda ratio results. In fact, for some myeloma patients, their disease can only be tracked with the free light chain lab results.
This recent forum posting by Cheryl G may help you understand better why the M-spike is useful for monitoring multiple myeloma.
Also, this post by Ian provides similar information, but from a slightly different perspective. It is useful for reinforcing some basic concepts related to multiple myeloma while also explaining different types of myeloma that have to be monitored in different ways. These distinctions may be more than theoretical in your case, as you may have the "light chain" variant of myeloma. That will depend on whether or not you have an M-spike.
I second, by the way, Multibilly's recommendation to get a consult at Mayo in Phoenix, if you can. There is a great group of myeloma specialists there, including Dr. Mikhael.
Good luck!
Re: Do my numbers indicate smoldering multiple myeloma?
Dear Terry,
Thank you so much for your reply! I don't see any sort of M-spike results on my labs, so perhaps this hasn't been measured, yet. I'll ask my doctor at my next appointment. Thank you for the links, too. These are very helpful!
I have taken your and Multibilly's advice and scheduled an appointment with a specialist at the Mayo Clinic. It isn't until January 13th, but they have promised to see me sooner if they can. In the meantime, I am gathering my laboratory results together to fax to them to Mayo.
I am so grateful to have found this site!
Warm regards,
Pris
Thank you so much for your reply! I don't see any sort of M-spike results on my labs, so perhaps this hasn't been measured, yet. I'll ask my doctor at my next appointment. Thank you for the links, too. These are very helpful!
I have taken your and Multibilly's advice and scheduled an appointment with a specialist at the Mayo Clinic. It isn't until January 13th, but they have promised to see me sooner if they can. In the meantime, I am gathering my laboratory results together to fax to them to Mayo.
I am so grateful to have found this site!
Warm regards,
Pris
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Pris - Name: Pris
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2017
- Age at diagnosis: 54
Re: Do my numbers indicate smoldering multiple myeloma?
Pris,
If you had an SPEP, they measured your M-spike (or at least tried to if one was present). Are you looking at online results or at a lab report? Online lab summaries don't always include the details on M-spikes (or whatever name your lab may use for an M-spike).
If you had an SPEP, they measured your M-spike (or at least tried to if one was present). Are you looking at online results or at a lab report? Online lab summaries don't always include the details on M-spikes (or whatever name your lab may use for an M-spike).
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Do my numbers indicate smoldering multiple myeloma?
Hi Multibilly,
I'm looking at the actual lab report. I can identify all the analytes and none of them are an M-spike, paraprotein level, abnormal protein band, or monoclonal protein. At least not in the blood work. Would this be on the bone marrow biopsy report? I'm so sorry if I sound like an idiot. This is like learning a new language!
I can't tell you how much I appreciate your help!
Pris
I'm looking at the actual lab report. I can identify all the analytes and none of them are an M-spike, paraprotein level, abnormal protein band, or monoclonal protein. At least not in the blood work. Would this be on the bone marrow biopsy report? I'm so sorry if I sound like an idiot. This is like learning a new language!
I can't tell you how much I appreciate your help!
Pris
-
Pris - Name: Pris
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2017
- Age at diagnosis: 54
Re: Do my numbers indicate smoldering multiple myeloma?
Pris,
First, you don't sound like an idiot. These lab reports are really complex to get your head around at first. But trust me, after awhile you will fly through a whole stack of them in a couple of minutes and be able to quickly pick out the markers that matter.
The BMB report measures the burden of disease via a figure known as bone marrow plasma %, not the M-spike that you would find in an SPEP or UPEP report. It could very well be that you simply don't have a serum M-spike and that you might have light chain smoldering multiple myeloma. Quite a few folks on this forum are light chain restricted. Having light chain restricted disease doesn't really change your prognosis or future treatment options. It just means that you need to track your disease primarily through your light chain levels.
In any case, I would simply ask your doc about it next time you see him. It's nothing to worry about in the meantime.
First, you don't sound like an idiot. These lab reports are really complex to get your head around at first. But trust me, after awhile you will fly through a whole stack of them in a couple of minutes and be able to quickly pick out the markers that matter.
The BMB report measures the burden of disease via a figure known as bone marrow plasma %, not the M-spike that you would find in an SPEP or UPEP report. It could very well be that you simply don't have a serum M-spike and that you might have light chain smoldering multiple myeloma. Quite a few folks on this forum are light chain restricted. Having light chain restricted disease doesn't really change your prognosis or future treatment options. It just means that you need to track your disease primarily through your light chain levels.
In any case, I would simply ask your doc about it next time you see him. It's nothing to worry about in the meantime.
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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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