Not quite sure what is going on here.
I presented with a very low M-spike measurement of 0.49 g/dL (4.9 g/L). The M-spike has fluctuated over the past year down to 0.30 and up and down within that small range. Free light chains seem to have always been within normal ranges (if I am reading my lab results correctly). No measurable protein in urine.
I have diffuse sclerotic lesions (osteosclerotic myeloma). But no lytic lesions.
I had 25% bone marrow involvement at diagnosis, which reduced to 1% after cyclophosphamide, Velcade, and dex (4 cycles). Then underwent an auto stem cell transplant.
I've been reading about oligosecretory myeloma and am wondering if this is my situation. Being that my lesions are sclerotic, I have been wondering if it is POEMS. (I have noticed some slight morning neuropathy that is becoming more consistent.)
After transplant, my M-spike reduced to 0.24 g/dL, which doesn't seem (to me) to be a huge difference from my prior measurements.
Any idea? Comments? Experiences?
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Re: Nonsecretory, oligosecretory, or POEMS?
Hi Debbie,
Just what were your serum free light chain numbers (including units of measure and reference ranges) at diagnosis and what are they now?
Getting into the differences between osteosclerotic multiple myeloma and POEMS and whether or not a patient may be oligosecretory with either diagnosis would require inputs from a top specialist, IMHO. I honestly don't know if it could be normal for an osteosclerotic or POEMS patient to present with a low M-spike, normal FLCs and a 25% bone marrow plasma cell percentage level like yours ... or if one can make a case for being oligosecretory. It is also peculiar to me that your M-spike would remain fairly constant while your bone marrow plasma cell percentage dropped from 25% to 1%. But maybe that has to do with the fact that you don't have traditional multiple myeloma?
In any case, I'm out of my league here.
What does your doctor say?
Just what were your serum free light chain numbers (including units of measure and reference ranges) at diagnosis and what are they now?
Getting into the differences between osteosclerotic multiple myeloma and POEMS and whether or not a patient may be oligosecretory with either diagnosis would require inputs from a top specialist, IMHO. I honestly don't know if it could be normal for an osteosclerotic or POEMS patient to present with a low M-spike, normal FLCs and a 25% bone marrow plasma cell percentage level like yours ... or if one can make a case for being oligosecretory. It is also peculiar to me that your M-spike would remain fairly constant while your bone marrow plasma cell percentage dropped from 25% to 1%. But maybe that has to do with the fact that you don't have traditional multiple myeloma?
In any case, I'm out of my league here.
What does your doctor say?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Nonsecretory, oligosecretory, or POEMS?
Debbie,
I have to say that I'm a bit confused why you would think that you have nonsecretory or oligosecretory disease, and I'm also confused why the neuropathy you're experiencing (or may be experiencing) suggests you have something exotic such as POEMS.
You've had Velcade and then you had high-dose melphalan as part of the stem cell transplant process. Both can cause neuropathy. So some might say it's actually somewhat odd that you haven't had many symptoms of neuropathy.
You clearly don't have nonsecretory disease given that you have an M-spike. True nonsecretory disease means you have no M-spike and no abnormally high free light chain levels.
Oligosecretory disease means your disease doesn't produce much of an M-spike even when you have rather high bone marrow percentage levels. It doesn't mean that the M-spike doesn't respond to treatment, even if the bone marrow percentage does. Just think of oligosecretory as in between normal disease (with a regular M-spike) and nonsecretory disease (which has no M-spike).
There are plenty of postings here in the forum about all of these subjects. It's easy to find them by just typing in single keywords like "oligosecretory", "nonsecretory", or "neuropathy" into the forum search box. If you type in "oligosecretory", for example, you'll almost instantly find this helpful forum discussion:
"Oligosecretory and nonsecretory myeloma - any difference?" (forum disc. started May 30, 2012)
I have to say that I'm a bit confused why you would think that you have nonsecretory or oligosecretory disease, and I'm also confused why the neuropathy you're experiencing (or may be experiencing) suggests you have something exotic such as POEMS.
You've had Velcade and then you had high-dose melphalan as part of the stem cell transplant process. Both can cause neuropathy. So some might say it's actually somewhat odd that you haven't had many symptoms of neuropathy.
You clearly don't have nonsecretory disease given that you have an M-spike. True nonsecretory disease means you have no M-spike and no abnormally high free light chain levels.
Oligosecretory disease means your disease doesn't produce much of an M-spike even when you have rather high bone marrow percentage levels. It doesn't mean that the M-spike doesn't respond to treatment, even if the bone marrow percentage does. Just think of oligosecretory as in between normal disease (with a regular M-spike) and nonsecretory disease (which has no M-spike).
There are plenty of postings here in the forum about all of these subjects. It's easy to find them by just typing in single keywords like "oligosecretory", "nonsecretory", or "neuropathy" into the forum search box. If you type in "oligosecretory", for example, you'll almost instantly find this helpful forum discussion:
"Oligosecretory and nonsecretory myeloma - any difference?" (forum disc. started May 30, 2012)
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JimNY
Re: Nonsecretory, oligosecretory, or POEMS?
Debbie,
Could you please describe what sclerotic lesions are and, if you know, whether they are different from osteosclerotic myeloma lesions? How were they discovered in your case? What symptoms did you experience? I do not think many participants in the Forum have written about this subject.
Thanks.
Could you please describe what sclerotic lesions are and, if you know, whether they are different from osteosclerotic myeloma lesions? How were they discovered in your case? What symptoms did you experience? I do not think many participants in the Forum have written about this subject.
Thanks.
Re: Nonsecretory, oligosecretory, or POEMS?
Hi!
Yes, the sclerotic lesions are the same as osteosclerotic lesions - abnormal thickening/scarring of the bone. The doctors were quite baffled with me in the beginning and I had numerous scans and 2 BMBs as well as a biopsy of one of the lesions. After 4 months of testing, I was diagnosed with osteosclerotic myeloma. POEMS is still a consideration, but I have not developed significant neuropathy. I have no lytic lesions, and I was given an auto stem cell transplant because the myeloma was attacking my bones with the sclerotic lesions. I am being seen by a well-known myeloma specialist, so I am in very good hands.
After seeing my doctor yesterday, I am in a good partial remission with no need for maintenance therapy - yay! He has ruled out nonsecretory or oligosecretory diagnoses, and feels that I can be monitored with blood work even though my M-spike may always be a part of my 'normal'.
I post this so that others who may have confusing criteria or tests can see that myeloma can present itself in a different way - although very rare. This is my most recent lab work.
Total Protein For PEP 7.1 g/dL 6.1 - 8.2 g/dL
Immunoglobulin G Serum 866 mg/dL 700 - 1600 mg/dL
Immunoglobulin M Serum 75 mg/dL 40 - 230 mg/dL
Free Kappa 11.88 mg/L 3.30 - 19.40 mg/L
Free Lambda 9.99 mg/L 5.71 - 26.30 mg/L
Kappa/lambda ratio 1.19 0.26 - 1.65
Immunoglobulin A Serum <5 mg/dL 70 - 400 mg/dL
Albumin Fraction 4.05 g/dL 2.90 - 5.10 g/dL
Protein EP - Alpha 1 Fraction 0.28 g/dL 0.10 - 0.40 g/dL
Protein EP - Alpha 2 Fraction 0.66 g/dL 0.50 - 1.10 g/dL
Protein EP - Beta Fraction 1.03 g/dL 0.70 - 1.60 g/dL
Protein EP - Gamma Fraction 1.08 g/dL 0.60 - 2.00 g/dL
Total Protein 7.1 g/dL 6.1 - 8.2 g/dL
Protein EP Interpretation: Monoclonal gammopathy.
Interpretation performed by pathologist: X, MD
Immunofixation Electrophoresis:
Monoclonal band(s) present, IgG lambda, 0.24 g/dL.
Yes, the sclerotic lesions are the same as osteosclerotic lesions - abnormal thickening/scarring of the bone. The doctors were quite baffled with me in the beginning and I had numerous scans and 2 BMBs as well as a biopsy of one of the lesions. After 4 months of testing, I was diagnosed with osteosclerotic myeloma. POEMS is still a consideration, but I have not developed significant neuropathy. I have no lytic lesions, and I was given an auto stem cell transplant because the myeloma was attacking my bones with the sclerotic lesions. I am being seen by a well-known myeloma specialist, so I am in very good hands.
After seeing my doctor yesterday, I am in a good partial remission with no need for maintenance therapy - yay! He has ruled out nonsecretory or oligosecretory diagnoses, and feels that I can be monitored with blood work even though my M-spike may always be a part of my 'normal'.
I post this so that others who may have confusing criteria or tests can see that myeloma can present itself in a different way - although very rare. This is my most recent lab work.
Total Protein For PEP 7.1 g/dL 6.1 - 8.2 g/dL
Immunoglobulin G Serum 866 mg/dL 700 - 1600 mg/dL
Immunoglobulin M Serum 75 mg/dL 40 - 230 mg/dL
Free Kappa 11.88 mg/L 3.30 - 19.40 mg/L
Free Lambda 9.99 mg/L 5.71 - 26.30 mg/L
Kappa/lambda ratio 1.19 0.26 - 1.65
Immunoglobulin A Serum <5 mg/dL 70 - 400 mg/dL
Albumin Fraction 4.05 g/dL 2.90 - 5.10 g/dL
Protein EP - Alpha 1 Fraction 0.28 g/dL 0.10 - 0.40 g/dL
Protein EP - Alpha 2 Fraction 0.66 g/dL 0.50 - 1.10 g/dL
Protein EP - Beta Fraction 1.03 g/dL 0.70 - 1.60 g/dL
Protein EP - Gamma Fraction 1.08 g/dL 0.60 - 2.00 g/dL
Total Protein 7.1 g/dL 6.1 - 8.2 g/dL
Protein EP Interpretation: Monoclonal gammopathy.
Interpretation performed by pathologist: X, MD
Immunofixation Electrophoresis:
Monoclonal band(s) present, IgG lambda, 0.24 g/dL.
Re: Nonsecretory, oligosecretory, or POEMS?
Thank you for this update, Debbie.
I am counting down how long it will take for people here in the forum to accuse your myeloma specialist of being some kind of witch doctor for not putting you on maintenance therapy.
The degree to which people have been brainwashed on this subject is amazing.
I think the type of lesions you have are the main thing that makes it unique. It is by no means "rare" for people to have an M-spike that does not drop to zero after treatment. It doesn't happen as often these days as it did in the past. People are getting treating more intensively, with better drugs, than in the past. But it still happens.
Also, as Jim already mentioned, there really isn't any sign you have nonsecretory or oligosecretory disease, nor do you have any signs of significant neuropathy. So asking questions about those topics in the context of your disease is actually confusing, rather than educational, for many people.
I am counting down how long it will take for people here in the forum to accuse your myeloma specialist of being some kind of witch doctor for not putting you on maintenance therapy.
The degree to which people have been brainwashed on this subject is amazing.
I think the type of lesions you have are the main thing that makes it unique. It is by no means "rare" for people to have an M-spike that does not drop to zero after treatment. It doesn't happen as often these days as it did in the past. People are getting treating more intensively, with better drugs, than in the past. But it still happens.
Also, as Jim already mentioned, there really isn't any sign you have nonsecretory or oligosecretory disease, nor do you have any signs of significant neuropathy. So asking questions about those topics in the context of your disease is actually confusing, rather than educational, for many people.
Re: Nonsecretory, oligosecretory, or POEMS?
Cheryl G wrote:
I could not agree more, Cheryl G. Big Pharma is great at marketing. I pretty much think that every time I am reading in the Beacon Forum!
I am counting down how long it will take for people here in the forum to accuse your myeloma specialist of being some kind of witch doctor for not putting you on maintenance therapy.
The degree to which people have been brainwashed on this subject is amazing.
I could not agree more, Cheryl G. Big Pharma is great at marketing. I pretty much think that every time I am reading in the Beacon Forum!
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Mark11
Re: Nonsecretory, oligosecretory, or POEMS?
Mark and Cheryl,
I think your comments about other posters on The Beacon were not necessary. We are all here to support one another. I have never heard anyone refer to anyone else's doctor as a "witch doctor." The topic of maintenance is widely debated by the experts, and while many do recommend it, there are some who do not. The data, as you know, has not been conclusive up to this point, although it does look as though there could be a benefit with a maintenance program.
I think we should try to be as kind to one another as possible. Isn't having multiple myeloma / smoldering multiple myeloma / MGUS hard enough without feeling the need to criticize others?
Let's try not to be so judgmental.
Ellen Harris
I think your comments about other posters on The Beacon were not necessary. We are all here to support one another. I have never heard anyone refer to anyone else's doctor as a "witch doctor." The topic of maintenance is widely debated by the experts, and while many do recommend it, there are some who do not. The data, as you know, has not been conclusive up to this point, although it does look as though there could be a benefit with a maintenance program.
I think we should try to be as kind to one another as possible. Isn't having multiple myeloma / smoldering multiple myeloma / MGUS hard enough without feeling the need to criticize others?
Let's try not to be so judgmental.
Ellen Harris
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