I have a question and hope someone might have some experience with elevated serum and urine light chains with an elevated light chain ratio.
Last year I was diagnosed with MGUS light chain. In October my blood work showed a reduced level and the hematologist/ oncologist said that was good news. We would just watch and see. But recent blood work has shown that my light chain levels are trending back up. Also, along with the light chains, my alkaline phosphatase jumped and is now abnormally high, with mild anemia and a low lymphs percentage.
I am told that it is good that I am not having lytic lesions. I am having pain that is in my left arm (same arm that showed bone marrow changes in 2015 that started all of this testing). I also do not have the M spike they tend to look for. My SPEP has not detected one.
Due to my clinical progression (heart, lungs, GI motility issues, swallowing and dysphagia issues, and drop in weight to name a few), my doctor is sending me to a surgeon for a Congo red stain fat pad biopsy to rule out amyloidosis. I also have testing to confirm scleroderma with elevated ANA and a positive antibody.
Here are some blood work levels that were flagged:
Alkaline Phosphatase 121 H 30 - 100 U/L
Lymphs 21.6 L 22 - 44 %
Hemoglobin 11.1 L 12.0-15.8 g/dL
Hematocrit 34.0 L 36.0-48.0 %
Ur Free Kappa Lt Ch 16.7 H 0.4 - 15.1 mg/L
Ur Free Lambda Lt Ch 2.1 0.8 - 10.1 mg/L
Ur Fr Kap Lambda Rat 7.95 H 0.50 - 4.00
Free Kappa Serum 36.46 H 3.30-19.40 mg/L
Free Lambda Serum 20.52 5.71-26.30 mg/L
Kappa/Lambda Ratio 1.78 H 0.26-1.65
Should I be worried? what can I expect? Any guidance would be helpful. Thank you again.
Forums
8 posts
• Page 1 of 1
Re: Meaning of elevated light chain levels
Hi Patti,
I would be thankful that you seem to have a very capable doc that is sharp enough to rule out the possibility of amyloidosis. Your symptoms plus your elevated alkaline phosphatase (a liver function marker) are good reasons to run the Congo red test in order to eliminate amyloidosis as a suspect cause.
I'll let others that have been through a fat pad needle aspiration comment on their experience with the procedure. But this is a description of the procedure:
https://www.nlm.nih.gov/medlineplus/ency/article/003841.htm
I would be thankful that you seem to have a very capable doc that is sharp enough to rule out the possibility of amyloidosis. Your symptoms plus your elevated alkaline phosphatase (a liver function marker) are good reasons to run the Congo red test in order to eliminate amyloidosis as a suspect cause.
I'll let others that have been through a fat pad needle aspiration comment on their experience with the procedure. But this is a description of the procedure:
https://www.nlm.nih.gov/medlineplus/ency/article/003841.htm
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Meaning of elevated light chain levels
I am having my fat pad biopsy on Monday. I guess we will know soon enough.
-
patti1963 - Name: Patti1963
- When were you/they diagnosed?: MGUS
- Age at diagnosis: 51
Re: Meaning of elevated light chain levels
So my initial biopsy testing showed that I did not have amyloid issue in my fat pad. I am not sure what that means, since I was also told that it could not rule amyloidosis out. only makes it less likely at this time.
So I have elevated kappa light chain and an elevated ratio both in urine and blood tests. Should I push for a bone marrow biopsy? Not sure what to think.
So I have elevated kappa light chain and an elevated ratio both in urine and blood tests. Should I push for a bone marrow biopsy? Not sure what to think.
-
patti1963 - Name: Patti1963
- When were you/they diagnosed?: MGUS
- Age at diagnosis: 51
Re: Meaning of elevated light chain levels
Hi Patti,
The way I understand it, a Congo red stain test of a fat pad sample is only accurate 80-90% of the time in successfully detecting amyloidosis. The only way to really rule it out is to biopsy the suspected affected organ (liver, kidney, etc) itself.
If your thinking in pushing for a bone marrow biopsy (have you ever had one?) is to rule out amyloidosis, I don't think I would be pushing for a bone marrow biopsy for that purpose alone. A Congo red stain test of a bone marrow sample is only accurate about 50% of the time in detecting amyloidosis - so it is even less accurate than a fat pad biopsy.
Since your current free light chain (FLC) levels aren't that far out of kilter, I also don't think that your FLC levels would be cause enough to justify a new bone marrow biopsy, assuming you have had one performed in the past. But it is certainly worthwhile to discuss this with your doctor and get his/her take.
What did you doctor suggest as the next steps?
The way I understand it, a Congo red stain test of a fat pad sample is only accurate 80-90% of the time in successfully detecting amyloidosis. The only way to really rule it out is to biopsy the suspected affected organ (liver, kidney, etc) itself.
If your thinking in pushing for a bone marrow biopsy (have you ever had one?) is to rule out amyloidosis, I don't think I would be pushing for a bone marrow biopsy for that purpose alone. A Congo red stain test of a bone marrow sample is only accurate about 50% of the time in detecting amyloidosis - so it is even less accurate than a fat pad biopsy.
Since your current free light chain (FLC) levels aren't that far out of kilter, I also don't think that your FLC levels would be cause enough to justify a new bone marrow biopsy, assuming you have had one performed in the past. But it is certainly worthwhile to discuss this with your doctor and get his/her take.
What did you doctor suggest as the next steps?
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Meaning of elevated light chain levels
I have not had a bone marrow biopsy. But when I saw the oncology hematologist this week, he is ordering one. Scheduled for April 26. He will also do the stain for amyloid but told me it will most likely not show anything since, as you said, it is less reliable.
He is also running other cancer tests. For example, he is ordering blood work panels for lymphoma, leukemia, chromosomal blood disorders, and a myeloma panel. I think he is being cautious given the decline of my health over the last few months and the elevated alkaline phosphatase. I also think because the scleroderma specialist in her last note stated "given the weight loss, there is additional concern for malignancy and the positive Ku may also suggest a parneoplastic process".
I do understand that my levels are not as high as others might have. but I am a proactive patient with progressive health issues impacting me. So ... I am okay with added tests. I am wanting the doctors to identify what is causing my decline.
Recently I had an MRI come back identifying a few more issues. The MRI was run to identify if the back surgery from a few years ago was causing the lower limb weakness I am experiencing. Not sure how it is related but it showed:
"Minimal posterior bulge bilateral facet changes and ligaments hypertrophy L3 L4 with an epidural lipomatosis at the sacral level, hemangioma is seen at S1 with Tarlov cyst at the S1-2 level".
From what I could find, the hypertrophy of the ligament on the L3-4 could be from the CTD, but I wonder if the epidural lipomatosis could be a amyloid based fat concentration. i guess time will tell. I am also wondering if the spinal hemangioma is related because of the possible association of the lytic nature that can impact the epidural space. Of course I am still waiting on neurology to call me back, but I expect they will soon enough given the symptoms.
I wonder, has anyone else found something identified on an MRI when no lytic lesions were identified on an sray?
Anyway, as you must have guessed, I have a somewhat complicated medical history with multi organs impacted. I am also suspected of having a connective tissue disease, they are trying to identify the exact one. possible scleroderma overlap with myositis. Right now they are calling it a mixed or undifferentiated till all the testing is completed. I go back to the scleroderma specialist May 4. I am more than likely heading for a muscle biopsy. but they like to run one test at a time.
Thank you all again. I am just trying to find answers to explain why I am declining so rapid in my function. Things I could do even just a few months ago I can no longer do.
He is also running other cancer tests. For example, he is ordering blood work panels for lymphoma, leukemia, chromosomal blood disorders, and a myeloma panel. I think he is being cautious given the decline of my health over the last few months and the elevated alkaline phosphatase. I also think because the scleroderma specialist in her last note stated "given the weight loss, there is additional concern for malignancy and the positive Ku may also suggest a parneoplastic process".
I do understand that my levels are not as high as others might have. but I am a proactive patient with progressive health issues impacting me. So ... I am okay with added tests. I am wanting the doctors to identify what is causing my decline.
Recently I had an MRI come back identifying a few more issues. The MRI was run to identify if the back surgery from a few years ago was causing the lower limb weakness I am experiencing. Not sure how it is related but it showed:
"Minimal posterior bulge bilateral facet changes and ligaments hypertrophy L3 L4 with an epidural lipomatosis at the sacral level, hemangioma is seen at S1 with Tarlov cyst at the S1-2 level".
From what I could find, the hypertrophy of the ligament on the L3-4 could be from the CTD, but I wonder if the epidural lipomatosis could be a amyloid based fat concentration. i guess time will tell. I am also wondering if the spinal hemangioma is related because of the possible association of the lytic nature that can impact the epidural space. Of course I am still waiting on neurology to call me back, but I expect they will soon enough given the symptoms.
I wonder, has anyone else found something identified on an MRI when no lytic lesions were identified on an sray?
Anyway, as you must have guessed, I have a somewhat complicated medical history with multi organs impacted. I am also suspected of having a connective tissue disease, they are trying to identify the exact one. possible scleroderma overlap with myositis. Right now they are calling it a mixed or undifferentiated till all the testing is completed. I go back to the scleroderma specialist May 4. I am more than likely heading for a muscle biopsy. but they like to run one test at a time.
Thank you all again. I am just trying to find answers to explain why I am declining so rapid in my function. Things I could do even just a few months ago I can no longer do.
-
patti1963 - Name: Patti1963
- When were you/they diagnosed?: MGUS
- Age at diagnosis: 51
Re: Meaning of elevated light chain levels
Just got my blood work back from the recent bone marrow aspiration. They were not able to complete the bone marrow biopsy because apparently I have abnormal hard bones. Go figure.
So as you can imagine, this is way over my head in terms of what it means. From what I can understand is they feel I do not have any acute leukemia or lymphoproliferative disorder with no immunophenotipic abnormalities, which I am guessing is great news; so no multiple myeloma, right?
Then it adds: cell population that resembles mononuclear cells and was based on CD45 (pan leukocyte fluorescent intensity) vs. side scatter (internal complexity) and says that it is 74% positive and then adds this specimen exhibits less than optimal viability by 7-amino-actinomycin D (7-AAD) exclusion dye and the possibility of differential effects on various subpopulations of cells cannot be entirely excluded.
Bone marrow specimen is cellular and shows trilineage hematopoiesis. Erythroid series are increased and show progressive maturation. There is no morphologic evidence of active plasma cell myeloma. Iron stores are decreased. Bone marrow particles are small and lack any well delineated vascular channels.
I am still waiting on other tests and the doctor's interpretation, but I was just curious if others ran into having the doctor not be able to complete a bone marrow biopsy test?
So need to retest? Complete the biopsy? Or say yea no abnormalities?
So as you can imagine, this is way over my head in terms of what it means. From what I can understand is they feel I do not have any acute leukemia or lymphoproliferative disorder with no immunophenotipic abnormalities, which I am guessing is great news; so no multiple myeloma, right?
Then it adds: cell population that resembles mononuclear cells and was based on CD45 (pan leukocyte fluorescent intensity) vs. side scatter (internal complexity) and says that it is 74% positive and then adds this specimen exhibits less than optimal viability by 7-amino-actinomycin D (7-AAD) exclusion dye and the possibility of differential effects on various subpopulations of cells cannot be entirely excluded.
Bone marrow specimen is cellular and shows trilineage hematopoiesis. Erythroid series are increased and show progressive maturation. There is no morphologic evidence of active plasma cell myeloma. Iron stores are decreased. Bone marrow particles are small and lack any well delineated vascular channels.
I am still waiting on other tests and the doctor's interpretation, but I was just curious if others ran into having the doctor not be able to complete a bone marrow biopsy test?
So need to retest? Complete the biopsy? Or say yea no abnormalities?
-
patti1963 - Name: Patti1963
- When were you/they diagnosed?: MGUS
- Age at diagnosis: 51
Re: Meaning of elevated light chain levels
Hi Everyone,
I have been dealing with so many medical issues, it is always something. Get a test done to get answers, and they end up adding issues and questions.
I just received the test results from a chest CT that was ordered by pulmonary to assess why my diffusing capacity of the lung for carbon monoxide (DLCO) is dropping at a fast rate (25% decline in less than a month). On the CT it states that there was mediastinal lymph nodes and bony destructive lesion. Not really sure what to think.
Any ideas? Is that something I should worry about? The last time I saw my doctor in May she felt that my MGUS levels were stable and looked good; slight anemia, but levels are low enough. So what is this all about? Not sure what to think.
I have been dealing with so many medical issues, it is always something. Get a test done to get answers, and they end up adding issues and questions.
I just received the test results from a chest CT that was ordered by pulmonary to assess why my diffusing capacity of the lung for carbon monoxide (DLCO) is dropping at a fast rate (25% decline in less than a month). On the CT it states that there was mediastinal lymph nodes and bony destructive lesion. Not really sure what to think.
Any ideas? Is that something I should worry about? The last time I saw my doctor in May she felt that my MGUS levels were stable and looked good; slight anemia, but levels are low enough. So what is this all about? Not sure what to think.
-
patti1963 - Name: Patti1963
- When were you/they diagnosed?: MGUS
- Age at diagnosis: 51
8 posts
• Page 1 of 1