Hello all,
I have chronic lymphocytic leukemia (CLL) and multiple myeloma. My doctor also strongly suspects amyloidosis in addition to multiple myeloma. I've had a crenated tongue for over a year, my 24-hour protein clearance is 4611 mg/24hr, monoclonal concentration is 159 mg/dL, and my 24-hr M-spike is 1665 mg/24hr (lots of bubbles in urine). Marrow biopsies and fat pad biopsies are negative, however, for amyloid staining. My doctor is hesitant to do a kidney biopsy as she does not wish to damage the kidneys more than necessary. I have a cardiac MRI scheduled for next week, and had an echocardiogram last month.
So, my questions is: Can AL (or other forms of) amyloidosis be confirmed without biopsy?
Thanks to all in advance,
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: Can amyloidosis be diagnosed without a biopsy?
Hi vanL,
While one wants to ideally biopsy the organ that may be suspected of having the amyloid deposits to verify whether one has amyloidosis, there is an alternative. You can just get a fat pad biopsy where the doctor takes a small sample of fat from your tummy to biopsy.
As I understand it, this is a fairly common way to check for amyloidosis when it doesn't show up on the bone marrow Congo red stain test, but the doctor still suspects it may be in play. While the fat pad biopsy is pretty good at catching amyloidosis, it could still miss the fact that you have amyloidosis and could give you a false negative. But I recall that its sensitivity for amyloidosis is generally better than bone marrow biopsy staining.
I've had a kidney biopsy for a different reason. It was no big deal and I was none the worse for it (they give you a local, you lie on a table, and a doctor inserts a long needle into your kidney with the help of real-time imaging to guide the needle). But it certainly does come with risk, and I remember at least one person on this forum passing away because of complications from the biopsy. So, it's probably good that your doctor is erring on the side of caution, especially if your kidneys are already compromised.
While one wants to ideally biopsy the organ that may be suspected of having the amyloid deposits to verify whether one has amyloidosis, there is an alternative. You can just get a fat pad biopsy where the doctor takes a small sample of fat from your tummy to biopsy.
As I understand it, this is a fairly common way to check for amyloidosis when it doesn't show up on the bone marrow Congo red stain test, but the doctor still suspects it may be in play. While the fat pad biopsy is pretty good at catching amyloidosis, it could still miss the fact that you have amyloidosis and could give you a false negative. But I recall that its sensitivity for amyloidosis is generally better than bone marrow biopsy staining.
I've had a kidney biopsy for a different reason. It was no big deal and I was none the worse for it (they give you a local, you lie on a table, and a doctor inserts a long needle into your kidney with the help of real-time imaging to guide the needle). But it certainly does come with risk, and I remember at least one person on this forum passing away because of complications from the biopsy. So, it's probably good that your doctor is erring on the side of caution, especially if your kidneys are already compromised.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Can amyloidosis be diagnosed without a biopsy?
Multibilly,
I sincerely appreciate your comments about your experience, it helps me prepare because I do believe a biopsy will be performed. Today my portal released yesterday's test results and my eGFR dropped from 52 to 42 compared to last month's result. Prior to that it dropped from 87 to 52 in a six month range. My serum creatinine is 1.6 mg/dL (range: 0.6-1.3), so up from 1.4 a month ago.
The cardiac MRI will be done using a contrast next Thursday. I suppose they guess heart damage too as my BNP is over 300, but am wondering if they might consider a biopsy of heart muscle as preferable to the kidney biopsy. To my knowledge, it is mandatory to biopsy and to type the amyloid.
I sincerely appreciate your comments about your experience, it helps me prepare because I do believe a biopsy will be performed. Today my portal released yesterday's test results and my eGFR dropped from 52 to 42 compared to last month's result. Prior to that it dropped from 87 to 52 in a six month range. My serum creatinine is 1.6 mg/dL (range: 0.6-1.3), so up from 1.4 a month ago.
The cardiac MRI will be done using a contrast next Thursday. I suppose they guess heart damage too as my BNP is over 300, but am wondering if they might consider a biopsy of heart muscle as preferable to the kidney biopsy. To my knowledge, it is mandatory to biopsy and to type the amyloid.
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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: Can amyloidosis be diagnosed without a biopsy?
Hmmm. You have a pretty low eGFR. If you are going to have an MRI with contrast, note the precautions that one cancer center takes when administering contrast to low eGFR patients:
"Historically serum creatinine was the lab value used to assess kidney function. A better and more accurate measure is a lab result called estimated glomerular filtration rate (eGFR). eGFR takes into account the serum creatinine value and also patient age, race and gender which affect kidney function results. At UCSF we use this very accurate blood test to assess kidney function and it can be obtained quickly, right before a scan. For CT, eGFR > 45 indicates no increased risk of kidney damage from contrast material. eGFR > 30, but less than 45 indicates that while it is safe to get contrast material, there is a small risk of causing kidney damage. In that situation, we will inject additional fluid into the patient’s vein before and after the contrast material injection. This hydration is effective to prevent any renal damage. For MRI, it is safe to give a regular dose of contrast material as long as the patient’s eGFR is > 30." (link to full text)
This article touches on the sensitivity of MRI with contrast in detecting amyloidosis (~90%).
Best of luck to you and let us know how things turn out.
"Historically serum creatinine was the lab value used to assess kidney function. A better and more accurate measure is a lab result called estimated glomerular filtration rate (eGFR). eGFR takes into account the serum creatinine value and also patient age, race and gender which affect kidney function results. At UCSF we use this very accurate blood test to assess kidney function and it can be obtained quickly, right before a scan. For CT, eGFR > 45 indicates no increased risk of kidney damage from contrast material. eGFR > 30, but less than 45 indicates that while it is safe to get contrast material, there is a small risk of causing kidney damage. In that situation, we will inject additional fluid into the patient’s vein before and after the contrast material injection. This hydration is effective to prevent any renal damage. For MRI, it is safe to give a regular dose of contrast material as long as the patient’s eGFR is > 30." (link to full text)
This article touches on the sensitivity of MRI with contrast in detecting amyloidosis (~90%).
Best of luck to you and let us know how things turn out.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Can amyloidosis be diagnosed without a biopsy?
Hi VanL:
I had a tongue biopsy 6 weeks ago and it came back AL amyloidosis. It was not bad at all. Amyloidosis did not show up in my bone marrow biopsy when I was diagnosed in 2015. My scorched, laced tongue was driving me crazy, and finally an oncology nurse practioner set up a biopsy for me. I have multiple myeloma and kidney failure.
.
It is a relief to have this diagnosis confirmed through biopsy. Good luck.
I had a tongue biopsy 6 weeks ago and it came back AL amyloidosis. It was not bad at all. Amyloidosis did not show up in my bone marrow biopsy when I was diagnosed in 2015. My scorched, laced tongue was driving me crazy, and finally an oncology nurse practioner set up a biopsy for me. I have multiple myeloma and kidney failure.
.
It is a relief to have this diagnosis confirmed through biopsy. Good luck.
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