Terry,
Wow ! Exactly the wording I needed to read. Answered perfectly. Thank you for taking the time to help. It may or may not turn out that I need to clutter up your forum with CLL questions – if the NIH does all they say they might, all of the question should be answered.
Thanks again, best to you.
Forums
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vanL - Name: vanL
- Who do you know with myeloma?: me
- When were you/they diagnosed?: July 2018
- Age at diagnosis: 60
Re: Kappa / lambda ratio & myeloma defining events
Best of luck; please keep us informed!
Denise
Denise
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Moonspeak - Name: Moonspeak
- When were you/they diagnosed?: 2002
- Age at diagnosis: 38
Re: Kappa / lambda ratio & myeloma defining events
Hi Van,
I came across your post. I also have CLL. I also have high IgG proteins and abnormal light chain ratio. Faint M-spike. Had a bone marrow biopsy and was diagnosed with MGUS. Bone survey shows no lesions. Just had MRI to see if need treatment for CLL. Yes. But have not seen the results of the test yet for any other "events." I have poor prognostic factors, even though I am 13q14, and also found unmutated. So far my oncologist has not said I have multiple myeloma.
I see you posted back in 2015. Has anything changed for you?
I came across your post. I also have CLL. I also have high IgG proteins and abnormal light chain ratio. Faint M-spike. Had a bone marrow biopsy and was diagnosed with MGUS. Bone survey shows no lesions. Just had MRI to see if need treatment for CLL. Yes. But have not seen the results of the test yet for any other "events." I have poor prognostic factors, even though I am 13q14, and also found unmutated. So far my oncologist has not said I have multiple myeloma.
I see you posted back in 2015. Has anything changed for you?
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grey girl - Name: grey girl
- Who do you know with myeloma?: no one yet
Re: Kappa / lambda ratio & myeloma defining events
Hello grey girl,
I have not posted as I am still waiting on a firm, multi-faceted (therefore confusing) diagnosis. Here is why: I did see the National Institutes of Health (NIH) and was accepted into their natural history study of chronic lymphocytic leukemia (CLL), and other malignancies. I've have had 4 official visits, had a bone marrow biopsy, and a CT scan with contrast. I will return for another bone marrow biopsy, just for research purposes, not necessarily due to progressive disease.
As a note, my serum CBC with differential shows classic CLL / IgA high / lambda, along with a second set of clonal cells with slightly different CD markers and levels, as well as kappa vs. lambda. A FISH test was run for CLL, came back as normal, meaning that for the 6 tested possibilities, none showed. A MYD88 L265P test was run and no mutation was found (explained later). I do have a small M-spike, sometimes two.
The CT scan did not show anything of interest, except for numerous ground glass nodules / lesions in each upper lung. This of course started a scare. I saw a local pulmonologist, had breathing exam, heart exam with treadmill, etc., waited 3 months, then last fall had another CT scan. This time it showed a single object (not-defined) and the ground glass nodules were gone. Said to be probable infection. Then I had a terrible cold.
The bone marrow biopsy was taken, tests were run for CLL-specific markers. The surprise was that it found I have 20-25% clonal plasma cells in the marrow; they stain negative for CD117. They did not expect to find them, and therefore ran out of material before tests could be run for plasma cells. The differential diagnosis was lymphoplasmacytic lymphoma (LPL) (IgA lambda positive), marginal zone lymphoma with plasmacytic differentiation. Could not rule out co-existence of B-lymphoid neoplasms + separate plasma cell neoplasm. I was told it might be something similar to Waldentroms macroglobulinemia, but with IgA vs. IgM. At my last appointment, even that is being questioned.
This is getting long, so to end: I have some level of shortness of breath for 2 years, I have had carpal tunnel, my tongue now often presents with teeth indentations. Perhaps I am headed towards the amyloidosis route?
IgG is 255.
IgM is 6.(all mg/dl)
IgA is 360 (doctor say is not normal IgA, also, started at 650 in early 2014).
Kappa light chain = 0.25.
Lambda = 89.40.
Kappa-lambda ratio is therefore 0.0027964.
Since I am IgA lambda, if this even applies per above posts, then lambda-kappa ratio = 357.60.
Honestly, i am not sure what to make of all of this. Should I rush to get a fat pad biopsy for amyloidosis? Should I be classified as having smoldering multiple myeloma?
The next bone marrow biopsy will tell if the plasma cells are expanding. I do not know what other tests they will run. My local hematologist-oncologist I see once a year does no tests; perhaps I need to change that too, but who / where?
Sorry to post so long, but someone else may need it (IgA Waldenstrom types, others?).
I have not posted as I am still waiting on a firm, multi-faceted (therefore confusing) diagnosis. Here is why: I did see the National Institutes of Health (NIH) and was accepted into their natural history study of chronic lymphocytic leukemia (CLL), and other malignancies. I've have had 4 official visits, had a bone marrow biopsy, and a CT scan with contrast. I will return for another bone marrow biopsy, just for research purposes, not necessarily due to progressive disease.
As a note, my serum CBC with differential shows classic CLL / IgA high / lambda, along with a second set of clonal cells with slightly different CD markers and levels, as well as kappa vs. lambda. A FISH test was run for CLL, came back as normal, meaning that for the 6 tested possibilities, none showed. A MYD88 L265P test was run and no mutation was found (explained later). I do have a small M-spike, sometimes two.
The CT scan did not show anything of interest, except for numerous ground glass nodules / lesions in each upper lung. This of course started a scare. I saw a local pulmonologist, had breathing exam, heart exam with treadmill, etc., waited 3 months, then last fall had another CT scan. This time it showed a single object (not-defined) and the ground glass nodules were gone. Said to be probable infection. Then I had a terrible cold.
The bone marrow biopsy was taken, tests were run for CLL-specific markers. The surprise was that it found I have 20-25% clonal plasma cells in the marrow; they stain negative for CD117. They did not expect to find them, and therefore ran out of material before tests could be run for plasma cells. The differential diagnosis was lymphoplasmacytic lymphoma (LPL) (IgA lambda positive), marginal zone lymphoma with plasmacytic differentiation. Could not rule out co-existence of B-lymphoid neoplasms + separate plasma cell neoplasm. I was told it might be something similar to Waldentroms macroglobulinemia, but with IgA vs. IgM. At my last appointment, even that is being questioned.
This is getting long, so to end: I have some level of shortness of breath for 2 years, I have had carpal tunnel, my tongue now often presents with teeth indentations. Perhaps I am headed towards the amyloidosis route?
IgG is 255.
IgM is 6.(all mg/dl)
IgA is 360 (doctor say is not normal IgA, also, started at 650 in early 2014).
Kappa light chain = 0.25.
Lambda = 89.40.
Kappa-lambda ratio is therefore 0.0027964.
Since I am IgA lambda, if this even applies per above posts, then lambda-kappa ratio = 357.60.
Honestly, i am not sure what to make of all of this. Should I rush to get a fat pad biopsy for amyloidosis? Should I be classified as having smoldering multiple myeloma?
The next bone marrow biopsy will tell if the plasma cells are expanding. I do not know what other tests they will run. My local hematologist-oncologist I see once a year does no tests; perhaps I need to change that too, but who / where?
Sorry to post so long, but someone else may need it (IgA Waldenstrom types, others?).
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vanL - Name: vanL
- Who do you know with myeloma?: me
- When were you/they diagnosed?: July 2018
- Age at diagnosis: 60
Re: Kappa / lambda ratio & myeloma defining events
Hi vanL,
Wow, there's a lot going on here and I'm not sure how much advice I can offer given your complex set of results.
However, given your shortness of breath and tongue indentations, it seems prudent to want to eliminate the possibility of amyloidosis via a fat pad biopsy. Did they not run a Congo red stain test on your bone marrow biopsy sample? Congo red staining of a bone marrow biopsy sample is not as accurate in detecting amyloidosis as a fat pad biopsy and may provide a false negative, but it would have been the easy first test to have done under the circumstances.
It concerns me that your local hematologist runs no tests. Is this because your are showing up at his office with all of the usual test results from the NIH and other facilities, etc? If you are looking for a recommendation for a myeloma specialist in your area, we may be able to help if you let us know where you live.
Wow, there's a lot going on here and I'm not sure how much advice I can offer given your complex set of results.
However, given your shortness of breath and tongue indentations, it seems prudent to want to eliminate the possibility of amyloidosis via a fat pad biopsy. Did they not run a Congo red stain test on your bone marrow biopsy sample? Congo red staining of a bone marrow biopsy sample is not as accurate in detecting amyloidosis as a fat pad biopsy and may provide a false negative, but it would have been the easy first test to have done under the circumstances.
It concerns me that your local hematologist runs no tests. Is this because your are showing up at his office with all of the usual test results from the NIH and other facilities, etc? If you are looking for a recommendation for a myeloma specialist in your area, we may be able to help if you let us know where you live.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Kappa / lambda ratio & myeloma defining events
I waited to respond until I had another bone marrow biopsy, bloodwork, and a cell clonality assay run (BIOMED-2). The NIH still has me in their natural history study for CLL, etc., and continue to state that I have CLL. The clonality testing states there are three separate neoplasms, 2 are b-cell / lymphocytes, and one is plasma cells.
The latest results: I have two populations of monoclonal lymphocytes, each presenting differently from the other in terms of CD markers and lambda / kappa restriction. Together they represent approx 20-25% of total bone marrow cells. One of the populations is about 98% of clonal b-cells / lambda, the other is approx. 1+% of clonal b-cells / kappa, and those left are normal. The larger population is immunophenotypically compatible with CLL.
Free Light chains:
Kappa = 0.31 mg/dl.
Lambda = 107.
Lambda-kappa ratio: 345.16.
Immunoglobulins:
IgG = 229,
IgA = 356,
IgM = 8.
MYD88 L265P test: "mutant negative". They no longer find me similar to Waldenstrom's.
Marrow plasma cells = 50% of all bone marrow cells. All are lambda restricted (same as the major population of lymphocytes). Plasma cells express: CD138, bright CD38, dim CD27, dim CD81 and are negative for CD45, CD19, CD20, CD56. Some plasma cells are bi- or multi-nucleated.
Peripheral blood clonal plasma cells: 9%. They have the same CD markers as above, but the report adds: Positive for intracellular IRF4, intracellular p63 and intracellular lambda light chain. They are negative for: CD19, CD20, CD45, CD56.
Marrow did not stain positive for amyloid. (Have not had fat pad biopsy, tongue still has scalloped edges, but has not ballooned in size.)
Other than my marrow sending out occasional nucleated red blood cells, ovalcytes, poikilocytosis, all in small quantities, none of this presents itself physically. Meaning, i get a cold now and then, I am tired more than not, but no symptoms to speak of. The NIH says to continue testing every six months. One of these 3 neoplasms will 'win out,' and then we will have to create a careful plan of action as treating plasma cells is very different from treating lymphocytes.
All comments welcome!
The latest results: I have two populations of monoclonal lymphocytes, each presenting differently from the other in terms of CD markers and lambda / kappa restriction. Together they represent approx 20-25% of total bone marrow cells. One of the populations is about 98% of clonal b-cells / lambda, the other is approx. 1+% of clonal b-cells / kappa, and those left are normal. The larger population is immunophenotypically compatible with CLL.
Free Light chains:
Kappa = 0.31 mg/dl.
Lambda = 107.
Lambda-kappa ratio: 345.16.
Immunoglobulins:
IgG = 229,
IgA = 356,
IgM = 8.
MYD88 L265P test: "mutant negative". They no longer find me similar to Waldenstrom's.
Marrow plasma cells = 50% of all bone marrow cells. All are lambda restricted (same as the major population of lymphocytes). Plasma cells express: CD138, bright CD38, dim CD27, dim CD81 and are negative for CD45, CD19, CD20, CD56. Some plasma cells are bi- or multi-nucleated.
Peripheral blood clonal plasma cells: 9%. They have the same CD markers as above, but the report adds: Positive for intracellular IRF4, intracellular p63 and intracellular lambda light chain. They are negative for: CD19, CD20, CD45, CD56.
Marrow did not stain positive for amyloid. (Have not had fat pad biopsy, tongue still has scalloped edges, but has not ballooned in size.)
Other than my marrow sending out occasional nucleated red blood cells, ovalcytes, poikilocytosis, all in small quantities, none of this presents itself physically. Meaning, i get a cold now and then, I am tired more than not, but no symptoms to speak of. The NIH says to continue testing every six months. One of these 3 neoplasms will 'win out,' and then we will have to create a careful plan of action as treating plasma cells is very different from treating lymphocytes.
All comments welcome!
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vanL - Name: vanL
- Who do you know with myeloma?: me
- When were you/they diagnosed?: July 2018
- Age at diagnosis: 60
Re: Kappa / lambda ratio & myeloma defining events
Hello,
I am updating to say I have been diagnosed officially at Duke to have bi-clonal chronic lymphocytic leukemia + multiple myeloma:
IgA lambda
50% plasma cells per (2) marrow biopsies.
FISH: t(14;16), Gain 1q, Del 13q.
CT Scan and full body x-ray: no bone damage seen (often typical for t(14;16).
24-hour Urine:
Total Protein: 4611 mgdL 24hr;
Albumin 49%;
Beta Globulin 41%;
M Spike: 1665 mg/24hr.
Monoclonal lambda plus IgA fragment.
Beta-2 Microglobulin: 5.53 mg/L
The doctors are evaluating for amyloidosis. They say to expect induction therapy and then tandem transplants unless something changes.
I am updating to say I have been diagnosed officially at Duke to have bi-clonal chronic lymphocytic leukemia + multiple myeloma:
IgA lambda
50% plasma cells per (2) marrow biopsies.
FISH: t(14;16), Gain 1q, Del 13q.
CT Scan and full body x-ray: no bone damage seen (often typical for t(14;16).
24-hour Urine:
Total Protein: 4611 mgdL 24hr;
Albumin 49%;
Beta Globulin 41%;
M Spike: 1665 mg/24hr.
Monoclonal lambda plus IgA fragment.
Beta-2 Microglobulin: 5.53 mg/L
The doctors are evaluating for amyloidosis. They say to expect induction therapy and then tandem transplants unless something changes.
-
vanL - Name: vanL
- Who do you know with myeloma?: me
- When were you/they diagnosed?: July 2018
- Age at diagnosis: 60
17 posts
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