Is it possible to have multiple myeloma-related amyloidosis without also having an elevated free light chain level?
Thank you.
Laurie
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lwem - Name: Laurie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
Re: Myeloma-related amyloidosis without elevated light chain
Hi Laurie,
Was your husband diagnosed with amyloidosis, or do you simply suspect he may have it? If you suspect it, what leads you to have that suspicion?
By far the most common kind of amyloidosis in myeloma patients is light chain amyloidosis (AL amyloidosis), which is usually accompanied by an elevated serum free light chain (sFLC) value and / or elevated sFLC fragments. In AL amyloidosis, it is in fact the sFLCs or fragments thereof that become "misfolded" and form the amyloid deposits, which in turn cause a patient all the problems associated with amyloidosis.
However, there are other kinds of amyloidosis, such as secondary amyloidosis, that are not accompanied by an elevated sFLC
If you read through the literature, you will find that not every AL amyloidosis patient presents with an abnormal kappa / lambda sFLC ratio. But I don't know if this means that those patients with a normal sFLC ratio still have one or more elevated sFLC values, as measured by the standard sFLC assay. I also don't know if the standard sFLC assay detects and measures sFLC fragments, or only intact sFLC chains.
In any case, this would be a great question to ask your husband's hematologist.
Was your husband diagnosed with amyloidosis, or do you simply suspect he may have it? If you suspect it, what leads you to have that suspicion?
By far the most common kind of amyloidosis in myeloma patients is light chain amyloidosis (AL amyloidosis), which is usually accompanied by an elevated serum free light chain (sFLC) value and / or elevated sFLC fragments. In AL amyloidosis, it is in fact the sFLCs or fragments thereof that become "misfolded" and form the amyloid deposits, which in turn cause a patient all the problems associated with amyloidosis.
However, there are other kinds of amyloidosis, such as secondary amyloidosis, that are not accompanied by an elevated sFLC
If you read through the literature, you will find that not every AL amyloidosis patient presents with an abnormal kappa / lambda sFLC ratio. But I don't know if this means that those patients with a normal sFLC ratio still have one or more elevated sFLC values, as measured by the standard sFLC assay. I also don't know if the standard sFLC assay detects and measures sFLC fragments, or only intact sFLC chains.
In any case, this would be a great question to ask your husband's hematologist.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Myeloma-related amyloidosis without elevated light chain
Hi Multibilly,
He has not been diagnosed with amyloidosis or even tested, and I guess I know that it is unlikely given his lack of serum free light chain issues (they have never been out of range and recently have been undetectable, even though he has an M-spike).
I guess I was just wondering if it was possible that we might be overlooking amyloidosis based on his low free light chains. As his caregiver, I always worry about missing something and not advocating for a test because I am mistaken about presentation.
Since his myeloma diagnosis, he has had persistent neuropathy (likely Velcade-related, although it persists 2 years after his last Velcade injection), congestive diastolic heart failure, low blood pressure, and now elevated alkaline phosphatase (other liver enzyme levels are in range).
Thank you.
Laurie
He has not been diagnosed with amyloidosis or even tested, and I guess I know that it is unlikely given his lack of serum free light chain issues (they have never been out of range and recently have been undetectable, even though he has an M-spike).
I guess I was just wondering if it was possible that we might be overlooking amyloidosis based on his low free light chains. As his caregiver, I always worry about missing something and not advocating for a test because I am mistaken about presentation.
Since his myeloma diagnosis, he has had persistent neuropathy (likely Velcade-related, although it persists 2 years after his last Velcade injection), congestive diastolic heart failure, low blood pressure, and now elevated alkaline phosphatase (other liver enzyme levels are in range).
Thank you.
Laurie
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lwem - Name: Laurie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
Re: Myeloma-related amyloidosis without elevated light chain
Did they do a bone marrow biopsy? They do a stain that checks for amyloid deposits.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Myeloma-related amyloidosis without elevated light chain
He had a bone marrow biopsy in May, but I don't think they checked for amyloidosis. At least I'm not aware that they might have. Is that a standard inquiry from a bone marrow biopsy?
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lwem - Name: Laurie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
Re: Myeloma-related amyloidosis without elevated light chain
I am in Canada, so it might be different where you live, but a stain to test for amyloid deposits would be a standard test done on a bone marrow biopsy sample, especially one to confirm a myeloma diagnosis. I've only ever had one bone marrow biopsy, 8 years ago, as blood work is sufficient to follow my illness, and it was checked for amyloid deposits.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Myeloma-related amyloidosis without elevated light chain
Hi Laurie,
As Lys notes, you may have been tested for amyloidosis from a bone marrow biopsy. I think you should contact your hematologist and ask about this. Also, I ask for copies of lab reports, be they blood tests or procedures such as biopsies, for reference. (You may be able to get these online.)
I checked a report I had from a bone marrow biopsy, back in 2009, and couldn't find reference to amyloidosis, but might not know what to look for.
As Lys notes, you may have been tested for amyloidosis from a bone marrow biopsy. I think you should contact your hematologist and ask about this. Also, I ask for copies of lab reports, be they blood tests or procedures such as biopsies, for reference. (You may be able to get these online.)
I checked a report I had from a bone marrow biopsy, back in 2009, and couldn't find reference to amyloidosis, but might not know what to look for.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Myeloma-related amyloidosis without elevated light chain
All,
I suggest you look for a reference to a "Congo red stain" test on the biopsy report, as opposed to a specific test that references "amyloidosis". The test itself is super simple. They just add the Congo red stain to the slide sample and visually look for an apple-green color to show up. If they see the apple-green color on the slide, this then indicates the presence of amyloid protein.
I believe that a lot of labs routinely conduct this test as part of the overall battery of tests that are done on a bone marrow sample. However, I'm reluctant to say that this test is "standard" for all labs and that sometimes the ordering doctor may need to call it out as an add-on test (but I'm just guessing on this point).
I suggest you look for a reference to a "Congo red stain" test on the biopsy report, as opposed to a specific test that references "amyloidosis". The test itself is super simple. They just add the Congo red stain to the slide sample and visually look for an apple-green color to show up. If they see the apple-green color on the slide, this then indicates the presence of amyloid protein.
I believe that a lot of labs routinely conduct this test as part of the overall battery of tests that are done on a bone marrow sample. However, I'm reluctant to say that this test is "standard" for all labs and that sometimes the ordering doctor may need to call it out as an add-on test (but I'm just guessing on this point).
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
8 posts
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