Hi there,
I just got the UPEP lab back and it was all normal; no protein seen on electrophoresis. Puzzling, really. One of my doctors sent me a message that she spoke to the hematologist / oncologist. He said the this was not a hematological malignancy and not amyloid. He said when the ratio is off and one number isn't above the normal range, it is insignificant.
Maybe I am reading the information online wrong, but that isn't what I have read. I think I would feel better if they did a fat pad biopsy and an electrocardiogram.
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Re: Low lambda FLC level, high kappa / lambda ratio?
Jen,
Again, I'm not a doc. But I believe that no protein in a 24 hour UPEP would generally argue against amyloidosis. But in my situation, even though I have elevated serum FLCs, no FLCs show up in my urine - so UPEPs aren't always the perfect test for everybody.
Regarding interpreting various FLC values, see this thread:
https://myelomabeacon.org/forum/kappa-lambda-free-light-chains-t5452.html#p31873
Again, I'm not a doc. But I believe that no protein in a 24 hour UPEP would generally argue against amyloidosis. But in my situation, even though I have elevated serum FLCs, no FLCs show up in my urine - so UPEPs aren't always the perfect test for everybody.
Regarding interpreting various FLC values, see this thread:
https://myelomabeacon.org/forum/kappa-lambda-free-light-chains-t5452.html#p31873
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Low lambda FLC level, high kappa / lambda ratio?
Thanks so much for your response.
I saw my hematologist yesterday. He is pretty certain that I don't have multiple myeloma or AL, but said although he has seen if before, it isn't his specialty and he is just one guy, so he is sending me to Boston University and sending my bone marrow to them, as well.
I showed him the binding site chart and he said that I don't have a monoclonal protein, nor do I have bone marrow suppression per the CBC and bone marrow biopsy. He isn't sure why my lambda is low. We did talk about my serum IgA being low and he suggested that it may be why my lambda is low.
He said he currently has 2 AL patients that underwent transplant and they are doing well. He said when he has seen AL it has screamed to him and he just doesn't see it with me. He really thinks that my symptoms are something other than a hematological problem.
I asked about doing a fat pad biopsy and he said, he wasn't totally sold on doing the bone marrow biopsy on the first place and didn't feel it was appropriate to do another invasive test on me when he doesn't think it is warranted. He is a very cautious man and given my concern offered to send me to BU. He wasn't certain that they would actually agree to see me, but said we would give it a try.
I hope he is right and I am wrong and this is all just a combination of a stressful year with terrible gi infection, a newborn, night shift and low iron.
I saw my hematologist yesterday. He is pretty certain that I don't have multiple myeloma or AL, but said although he has seen if before, it isn't his specialty and he is just one guy, so he is sending me to Boston University and sending my bone marrow to them, as well.
I showed him the binding site chart and he said that I don't have a monoclonal protein, nor do I have bone marrow suppression per the CBC and bone marrow biopsy. He isn't sure why my lambda is low. We did talk about my serum IgA being low and he suggested that it may be why my lambda is low.
He said he currently has 2 AL patients that underwent transplant and they are doing well. He said when he has seen AL it has screamed to him and he just doesn't see it with me. He really thinks that my symptoms are something other than a hematological problem.
I asked about doing a fat pad biopsy and he said, he wasn't totally sold on doing the bone marrow biopsy on the first place and didn't feel it was appropriate to do another invasive test on me when he doesn't think it is warranted. He is a very cautious man and given my concern offered to send me to BU. He wasn't certain that they would actually agree to see me, but said we would give it a try.
I hope he is right and I am wrong and this is all just a combination of a stressful year with terrible gi infection, a newborn, night shift and low iron.
Re: Low lambda FLC level, high kappa / lambda ratio?
Ok, so I asked about the plasma cells in the bone marrow biopsy and my doctor read the report and said the pathologist didn't comment on the percentage, but would have if it would have been off. Does a normal bone marrow biopsy rule out multiple myeloma?
I have read some things that say CT / MRI / xray will show signs of multiple myeloma and amyloidosis. I have had 2 chest xrays, a thoracic xray, cspine MRI, lumbar MRI, and brain MRI with contrast, and a abd/pelvic CT with contrast. Can you see amyloid deposits on imaging?
I have read some things that say CT / MRI / xray will show signs of multiple myeloma and amyloidosis. I have had 2 chest xrays, a thoracic xray, cspine MRI, lumbar MRI, and brain MRI with contrast, and a abd/pelvic CT with contrast. Can you see amyloid deposits on imaging?
Re: Low lambda FLC level, high kappa / lambda ratio?
Multibilly,
I know you aren't a doctor, but I am interested in things that could potentially throw off your free light chain ratio. I have looked all over the place and pretty much end up at multiple myeloma or amyloidosis. Would love your insight. Thanks, Jen
I know you aren't a doctor, but I am interested in things that could potentially throw off your free light chain ratio. I have looked all over the place and pretty much end up at multiple myeloma or amyloidosis. Would love your insight. Thanks, Jen
Re: Low lambda FLC level, high kappa / lambda ratio?
Sorry, I don't have a good answer for you with this particular combination of FLC values if it's not a plasma cell disorder.
The bone marrow biopsy is the definitive test for multiple myeloma (but not amylodosis). However, bone marrow biopsies are hit-and-miss affairs since the disease may not be spread evenly throughout one's bone marrow.
If you are going to go to Boston, I would again recommend Dana Farber.
The bone marrow biopsy is the definitive test for multiple myeloma (but not amylodosis). However, bone marrow biopsies are hit-and-miss affairs since the disease may not be spread evenly throughout one's bone marrow.
If you are going to go to Boston, I would again recommend Dana Farber.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Low lambda FLC level, high kappa / lambda ratio?
Well, I got off the phone with the amyloidosis center at BU and the associate director reviewed my medical chart and don't believe an evaluation is warranted. I was shocked because one of the staff members said that with symptoms and off labs they usually will evaluate you and only if they clearly don't believe AL to be the case will the refuse. I guess I should take this as a good sign seeing that they are the experts and would assume that they would be extra cautious. Not sure what to do now. My heme really thinks it's not a hem issue, but not sure what it is.
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