Per urging from my oncologist, I saw nephrologist last week to try to sort out why I have low sodium and to make sure that it is due to my SMM and not something else. During the course of reviewing my labs and analyzing a quick and dirty urine lab test he ran in the office during my visit, he noticed a discrepancy the between the protein in my serum and urine and suspects light chain deposition disease (LCDD) (he was basically asking "where is all your protein going?"). I am therefore going to get a kidney biopsy to confirm whether I have LCDD or not.
LCDD is where light chains get deposited in the kidney's glomeruli (all the little filtering tubes in one's kidneys).
Does anybody else out there have LCDD along with MGUS or SMM? LCDD is rare to begin with and 85% of cases are associated with kappa free light chains (I am IgG lambda smoldering myeloma). If I test positive for it, then it sounds like I would need to start multiple myeloma chemo, which I was really hoping to avoid for at least a couple of years.
I'm not finding a ton of info on the web regarding LCDD. Being somebody that likes working on cars, I picture FLCs clogging up my glomeruli like a car oil filter with old motor oil running through it. Does chemo reverse these deposits and clean out one's glomeruli or does it simply halt its progress? Any stories on your journey with LCDD would be appreciated.
Per my own advice to others, I'm not fretting (much) about the results of the upcoming test, but I am trying to get my head around all this in case I test positive for it and need to have a conversation regrading treatment with my oncologist.
Forums
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Light chain deposition disease (LCDD) & multiple myeloma
I have MGUS with amyloidosis, which is similar to light chain deposition disease in its pathology and symptoms. The big difference being that, in amyloidosis, the free light chains misfold and are deposited in tissues (kidney, heart, GI tract, etc.) as conglomerates in the shape of fibrils (amyloids). For LCDD the proteins are not misfolded and they appear as granular deposits in tissues.
From what you have described, you could have LCDD or amyloidosis or ? ... and your kidney biopsy should determine this.
My kidneys are the ones mainly affected and proteinuria is how we first discovered it. Have you had a 24 hour urine test to quantify how much protein your kidneys are losing? Proteinuria is common with these diseases when the kidneys are involved and the first side effect of this is that you lose albumin at a fast enough rate that your liver does not keep up with synthesis, so serum levels fall, resulting in lowered osmotic pressure and your bodies ability to hold fluids in the blood stream. Lower leg edema and light headedness from low blood pressure become common symptoms initially.
If your biopsy is positive for either disease, you will likely want to get an ECHO/EKG to rule out heart involvement. Treatments will likely try to reduce your free light chain levels, since these proteins are the culprit. I am on CyBorD.
The only positive I have observed over multiple myeloma, and this is completely subjective
, is that the abnormal plasma cells do not typically behave as aggressively in amyloidosis. The burden of plasma cells is usually low and the problem is the light chains that they are pumping out which build up in your tissues/organs over time.
I wish you well.
From what you have described, you could have LCDD or amyloidosis or ? ... and your kidney biopsy should determine this.
My kidneys are the ones mainly affected and proteinuria is how we first discovered it. Have you had a 24 hour urine test to quantify how much protein your kidneys are losing? Proteinuria is common with these diseases when the kidneys are involved and the first side effect of this is that you lose albumin at a fast enough rate that your liver does not keep up with synthesis, so serum levels fall, resulting in lowered osmotic pressure and your bodies ability to hold fluids in the blood stream. Lower leg edema and light headedness from low blood pressure become common symptoms initially.
If your biopsy is positive for either disease, you will likely want to get an ECHO/EKG to rule out heart involvement. Treatments will likely try to reduce your free light chain levels, since these proteins are the culprit. I am on CyBorD.
The only positive I have observed over multiple myeloma, and this is completely subjective
, is that the abnormal plasma cells do not typically behave as aggressively in amyloidosis. The burden of plasma cells is usually low and the problem is the light chains that they are pumping out which build up in your tissues/organs over time. I wish you well.
Re: Light chain deposition disease (LCDD) & multiple myeloma
I have kappa free light chain multiple myeloma and it affected my kidneys similar to your description (ie "plugged them up"). My nephrologist ordered a kidney biopsy and a bone marrow biopsy to confirm the diagnosis. Before I started treatment, my kidney function dropped precipitously to approximately 12% of normal.
I started taking Velcade and dexamethasone followed by an auto stem cell transplant, and my kidney function improved to about 35% and seems to be holding (2.5 years now). My nephrologist assured me that at my age (67) I could function quite normally with this degree of function.
Good luck with your diagnosis!
I started taking Velcade and dexamethasone followed by an auto stem cell transplant, and my kidney function improved to about 35% and seems to be holding (2.5 years now). My nephrologist assured me that at my age (67) I could function quite normally with this degree of function.
Good luck with your diagnosis!
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coopershawk - Who do you know with myeloma?: No one else.
- When were you/they diagnosed?: August 2010
- Age at diagnosis: 64
Re: Light chain deposition disease (LCDD) & multiple myeloma
Thanks Coopershawk and Covelo. I do have a new UPEP pending. The thought occurred to me that amyloidosis could also be a possibility here. After a long walk today, I think I'm just going to push for having the biopsy done ASAP to know just what I'm dealing with.
BTW, just how does one measure kidney efficiency? Sounds like one wants to catch and treat all this as early as possible since one's kidneys may never fully recover if one suffers from either one of these maladies?
BTW, just how does one measure kidney efficiency? Sounds like one wants to catch and treat all this as early as possible since one's kidneys may never fully recover if one suffers from either one of these maladies?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Light chain deposition disease (LCDD) & multiple myeloma
Renal function is measured in the blood by a test called eGlomerular Filtration Rate (eGFR). My nephrologist uses this number, and other tests, to track kidney function. He told me when I first saw him, and my kidney function was ~ 12%, that he considers recommending dialysis when it gets to around 8-9%. So I was close!
After treatment it gradually increased to ~35% where it is now and it seems to have leveled off. He was quite impressed with the results of my treatment.
After treatment it gradually increased to ~35% where it is now and it seems to have leveled off. He was quite impressed with the results of my treatment.
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coopershawk - Who do you know with myeloma?: No one else.
- When were you/they diagnosed?: August 2010
- Age at diagnosis: 64
Re: Light chain deposition disease (LCDD) & multiple myeloma
Thanks again Coopershawk. I never did pay attention to the GFR on my lab reports and never bothered to understand that figure .... until today.
My latest GFR is 86 and it sounds like the rule of thumb for a healthy GFR is to take 140 and subtract one's age from it. So, in my case, I am in great shape (86 measured against a target of 84). This gives me some hope that this may just be a wild goose chase.
My latest GFR is 86 and it sounds like the rule of thumb for a healthy GFR is to take 140 and subtract one's age from it. So, in my case, I am in great shape (86 measured against a target of 84). This gives me some hope that this may just be a wild goose chase.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Light chain deposition disease (LCDD) & multiple myeloma
Well, this may be helpful to the next person that goes down this road. Per a follow up discussion with my neprhologist, he said that LCDD is basically a form of amyloidosis. Before we had tests for FLCs and really understood what they were, LCDD used to be lumped in with "amyloidosis".
He also said that one has to be fairly far along with LCDD for the GFR to be affected, so it is not a good predictor of having the disease or not (at least in the early stages).
Anyway, I will be getting a renal biopsy scheduled ASAP to figure out just what is going on here. If I end up having LCDD, then this is a good reason for a person to see a nephrologist as well as a hematologist if they have multiple myeloma. I saw three multiple myeloma hematologists/oncologists before seeing the nephrologist, and none of the oncologists picked up on the discrepancies in the blood and urine tests that the nephrologist saw (i.e. where is all the protein in your blood going – it should just pass through your kidneys?).
He also said that one has to be fairly far along with LCDD for the GFR to be affected, so it is not a good predictor of having the disease or not (at least in the early stages).
Anyway, I will be getting a renal biopsy scheduled ASAP to figure out just what is going on here. If I end up having LCDD, then this is a good reason for a person to see a nephrologist as well as a hematologist if they have multiple myeloma. I saw three multiple myeloma hematologists/oncologists before seeing the nephrologist, and none of the oncologists picked up on the discrepancies in the blood and urine tests that the nephrologist saw (i.e. where is all the protein in your blood going – it should just pass through your kidneys?).
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Light chain deposition disease (LCDD) & multiple myeloma
Your post on GFR got me wondering since my lab (Kaiser) only reports my serum creatinine levels and states whether the GFR is greater than or less than 60. This is what Wikipedia states about the formula for estimating GFR that you were referring to. Basically, as your serum creatinine levels rise, the estimate of your GFR decreases.
"A commonly used surrogate marker for estimate of creatinine clearance is the Cockcroft-Gault (CG) formula, which in turn estimates GFR in ml/min:[7] It is named after the scientists who first published the formula, and it employs serum creatinine measurements and a patient's weight to predict the creatinine clearance.[8][9] The formula, as originally published, is:
eC_{Cr} = (140 - Age) x Mass (in kilograms) x 0.85 (if Female) divided by (72 x Serum Creatinine (in mg/dL))"
"A commonly used surrogate marker for estimate of creatinine clearance is the Cockcroft-Gault (CG) formula, which in turn estimates GFR in ml/min:[7] It is named after the scientists who first published the formula, and it employs serum creatinine measurements and a patient's weight to predict the creatinine clearance.[8][9] The formula, as originally published, is:
eC_{Cr} = (140 - Age) x Mass (in kilograms) x 0.85 (if Female) divided by (72 x Serum Creatinine (in mg/dL))"
Re: Light chain deposition disease (LCDD) & multiple myeloma
Thanks. For what it's worth, all my lab results before this one also published my GFR just like yours (i.e. >60 or not). A different lab (but within the same hospital that I used before) processed my samples this time and I got an actual GFR figure this time around. I saw the lab orders and it was for a basic metabolic panel and didn't call out anything special. Amazingly, two labs within the same hospital don't use the same measurement equipment, thresholds for good/bad markers, nor report styles.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Light chain deposition disease (LCDD) & multiple myeloma
As an analytical chemist for over 20 years, the units, or lack thereof, used in these tests just drives me nuts. First off, nobody uses deciliters as a standard measurement volume. Everything is microliters, milliliters, liters. That way everything is a factor of 1000 fold dilution. The lack of consistency between between labs is amazing.
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