I have been a "smoldering myeloma" patient for over a year and now, having been referred to Moffitt Cancer Center in Tampa, FL., I have been told I may have amyloidosis, which I think is another way of saying LCDD. I am due to have a kidney biopsy to confirm the diagnosis.
My urine has been very, very sudsy for the past year, but my doctors couldn't seem to understand why I was losing so much protein in my urine. Finally, my primary doctor prodded my oncologist to get to the bottom of this and he referred me to Moffitt. My myeloma specialist there did a repeat bone marrow biopsy, labs, and 24 hour urinalysis. Her suspicion is that I have amyloidosis.
I don't know, but I hope that my kidneys will improve after an autologous stem cell transplant.
Forums
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gloriosky - Name: Gloria Phillips
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Jan. 2011
- Age at diagnosis: 57
Re: Light chain deposition disease (LCDD) & multiple myeloma
Hey Gloriosky,
LCDD and Amyloidosis are similar, but not exactly the same. Regardless, a kidney biopsy will tell you definitively whether you have either one of these. It's the gold standard for testing for this disease. The damage the disease inflicts is plainly visible through electron microscopy of the kidney biopsy tissue. You can see what the damage looks likes here:
http://www.kidneypathology.com/English_version/Amyloidosis_and_others.html
The basic treatment for either is similar to what one does for multiple myeloma. If I end up having LCDD, then I will investigate a similar course of treatment that I would for multiple myeloma, namely the use of novel agents and only using ASCT as backup plan. Just because one has LCCD or amyloidosis, doesn't automatically mean that you should choose an ASCT to treat it. Choose your treatment options carefully and do your homework on the pros and cons of these options.
LCDD and Amyloidosis are similar, but not exactly the same. Regardless, a kidney biopsy will tell you definitively whether you have either one of these. It's the gold standard for testing for this disease. The damage the disease inflicts is plainly visible through electron microscopy of the kidney biopsy tissue. You can see what the damage looks likes here:
http://www.kidneypathology.com/English_version/Amyloidosis_and_others.html
The basic treatment for either is similar to what one does for multiple myeloma. If I end up having LCDD, then I will investigate a similar course of treatment that I would for multiple myeloma, namely the use of novel agents and only using ASCT as backup plan. Just because one has LCCD or amyloidosis, doesn't automatically mean that you should choose an ASCT to treat it. Choose your treatment options carefully and do your homework on the pros and cons of these options.
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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
Hi Gloriosky. I would also note that it is important to determine which organs are involved if you are diagnosed with either amyloidosis or LCDD.
The heart plays a critical role in the prognosis of amyloidosis (paper below). As the protein is deposited, the heart starts to head towards congestive heart failure. Along with the kidney, these are the 2 critical organs to watch. The amyloid proteins are resistant to breakdown so can be very stubborn and slow to be cleared from organs. Sometimes this takes years, and some level of damage may never be repaired.
The newer drug regimens (CyBorD) have shown good efficacy for amyloidosis and how long they keep you in remission is still unknown. When I was first diagnosed with amyloidosis, I read everything out there and it took me a while to realize anything published before 2010 was pretty much out of date and mostly meaningless.
S Kumar et al, "Revised Prognostic Staging System for Light Chain Amyloidosis Incorporating Cardiac Biomarkers and Serum Free Light Chain Measurements," Journal of Clinical Oncology, 2012 (full text pdf)
J Mikhael, "Cyclophosphamide-bortezomib-dexamethasone (CyBorD) produces rapid and complete hematologic response in patients with AL amyloidosis," Blood, May 10, 2012; Blood: 119 (19) (full text)
The heart plays a critical role in the prognosis of amyloidosis (paper below). As the protein is deposited, the heart starts to head towards congestive heart failure. Along with the kidney, these are the 2 critical organs to watch. The amyloid proteins are resistant to breakdown so can be very stubborn and slow to be cleared from organs. Sometimes this takes years, and some level of damage may never be repaired.
The newer drug regimens (CyBorD) have shown good efficacy for amyloidosis and how long they keep you in remission is still unknown. When I was first diagnosed with amyloidosis, I read everything out there and it took me a while to realize anything published before 2010 was pretty much out of date and mostly meaningless.
S Kumar et al, "Revised Prognostic Staging System for Light Chain Amyloidosis Incorporating Cardiac Biomarkers and Serum Free Light Chain Measurements," Journal of Clinical Oncology, 2012 (full text pdf)
J Mikhael, "Cyclophosphamide-bortezomib-dexamethasone (CyBorD) produces rapid and complete hematologic response in patients with AL amyloidosis," Blood, May 10, 2012; Blood: 119 (19) (full text)
Re: Light chain deposition disease (LCDD) & multiple myeloma
Gloriosky: Totally agree with Covelo. LCDD "tends" to be restricted to the kidney (but not always), whereas amyloidosis can affect several organs at once and, very importantly, the heart. If you end up testing positive for amyloidosis, you will absolutely want to get your heart function checked out. Not just for prognosis, but also just for your immediate health. Good luck on the biopsy.
BTW, here is a very recent article on ASCT and AL. Argues for ASCT in this case.
A Dispenzieri et al., "Patients with immunoglobulin light chain amyloidosis undergoing autologous stem cell transplantation have superior outcomes compared with patients with multiple myeloma: a retrospective review from a tertiary referral center," Bone Marrow Transplant. Oct 2013, 48(10):1302-7.
BTW, here is a very recent article on ASCT and AL. Argues for ASCT in this case.
A Dispenzieri et al., "Patients with immunoglobulin light chain amyloidosis undergoing autologous stem cell transplantation have superior outcomes compared with patients with multiple myeloma: a retrospective review from a tertiary referral center," Bone Marrow Transplant. Oct 2013, 48(10):1302-7.
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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
Hi Multibilly,
I am a member on this forum. I have a few comments in response to your question about LCDD and multiple myeloma or smoldering myeloma.
My friend was diagnosed August 2012. First thing they found was LCDD, after multiple myeloma, type: light chain myeloma (kappa). For the record, the lambda ones seem to affect the kidneys even worse than kappas do. You are absolutely right, not much info about LCDD and their reduction after treatment. If you are interested, though, I have a few articles I can send over.
Some people have LCDD (benign condition) that stands by its own, but most have myeloma involvement. In this case, (myeloma) light chains are a mere product released in the blood by the myeloma cell. It's the m-protein they produce (monoclonal). Their signature if you like.
I would check if I were you if myeloma is waking up. Sounds like it.
Active myeloma cells produce light chains which you won't see through routine tests like : SPEP / UPEP etc. (on my friend, all these are useless). You need sFLC for your one (lambda) + ratio (important). High protein count and sFLC implies transition between stages, from MGUS to ASMM to SMM (asymptomatic / symptomatic)
I assume you are smoldering?
Standard chemo fights myeloma, and by keeping myeloma at bay you are at the same time reducing these light chains.
Also check you INR number (international normalised ratio). It's important . You may have hyperviscosity (can cause bleeding , loads of complications). Because there is so much space in blood, with these light chains that are being reabsorbed back into your system (some LC pass the kidney filter only to be reabsorbed back into system, but some to pass into urine ), your blood is too ''crowded'' and you get circulation problems (stroke etc).
Solve the myeloma part and LCDD will go away at the same time.
My friend was on CTD (cyclophosphamide, thalidomide, dex), now Velcade.
kidney efficiency : chronic kidney disease stage, GFR level
s1 ckd - gfr 90 or above normal
s2 60 - 89 mild moderate decrease
s3 30 - 59 moderate
s4 15 - 29 severely decreased
s5 < 15 end stage (different from hospital to hospital ...slightly)
another : Creatinine (important), dreatinine clearance
Amyloidosis is when free light chains, unbound, come together and form a specific shape. Hence, amyloid. These are more damaging and can deposit on all your major organs, heart, etc.
LCDD is free light chains, unbound (do not come together and stick to each other), and seem to affect kidneys mainly.
You should consider treatment. You don't want to end up on dialysis machine.
Limit your protein. That can help with the effects that light chains have on kidneys and put less stress on them. Calculate your daily necessary intake and cut out some protein.
Drink plenty water, stay hydrated if problem with kidneys. 2 to 2.5 liters / day. These are things we can have some control over.
Reduce sodium intake if high. Also careful with ankle oenema.
Take care.
johanna.
Hope it helped.
I am a member on this forum. I have a few comments in response to your question about LCDD and multiple myeloma or smoldering myeloma.
My friend was diagnosed August 2012. First thing they found was LCDD, after multiple myeloma, type: light chain myeloma (kappa). For the record, the lambda ones seem to affect the kidneys even worse than kappas do. You are absolutely right, not much info about LCDD and their reduction after treatment. If you are interested, though, I have a few articles I can send over.
Some people have LCDD (benign condition) that stands by its own, but most have myeloma involvement. In this case, (myeloma) light chains are a mere product released in the blood by the myeloma cell. It's the m-protein they produce (monoclonal). Their signature if you like.
I would check if I were you if myeloma is waking up. Sounds like it.
Active myeloma cells produce light chains which you won't see through routine tests like : SPEP / UPEP etc. (on my friend, all these are useless). You need sFLC for your one (lambda) + ratio (important). High protein count and sFLC implies transition between stages, from MGUS to ASMM to SMM (asymptomatic / symptomatic)
I assume you are smoldering?
Standard chemo fights myeloma, and by keeping myeloma at bay you are at the same time reducing these light chains.
Also check you INR number (international normalised ratio). It's important . You may have hyperviscosity (can cause bleeding , loads of complications). Because there is so much space in blood, with these light chains that are being reabsorbed back into your system (some LC pass the kidney filter only to be reabsorbed back into system, but some to pass into urine ), your blood is too ''crowded'' and you get circulation problems (stroke etc).
Solve the myeloma part and LCDD will go away at the same time.
My friend was on CTD (cyclophosphamide, thalidomide, dex), now Velcade.
kidney efficiency : chronic kidney disease stage, GFR level
s1 ckd - gfr 90 or above normal
s2 60 - 89 mild moderate decrease
s3 30 - 59 moderate
s4 15 - 29 severely decreased
s5 < 15 end stage (different from hospital to hospital ...slightly)
another : Creatinine (important), dreatinine clearance
Amyloidosis is when free light chains, unbound, come together and form a specific shape. Hence, amyloid. These are more damaging and can deposit on all your major organs, heart, etc.
LCDD is free light chains, unbound (do not come together and stick to each other), and seem to affect kidneys mainly.
You should consider treatment. You don't want to end up on dialysis machine.
Limit your protein. That can help with the effects that light chains have on kidneys and put less stress on them. Calculate your daily necessary intake and cut out some protein.
Drink plenty water, stay hydrated if problem with kidneys. 2 to 2.5 liters / day. These are things we can have some control over.
Reduce sodium intake if high. Also careful with ankle oenema.
Take care.
johanna.
Hope it helped.
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johanna - Name: Joanna
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: august 2012
- Age at diagnosis: 60
Re: Light chain deposition disease (LCDD) & multiple myeloma
Many thanks Johanna. It was very considerate of you to post his.
Yes, I am smoldering.
I get a full set of lab tests done every two months (SPEP, UPEP, BMP, IFX, etc, including free light chain tests) and I get a skeletal survey done every 6 months. Nothing has dramatically changed since I first got diagnosed back in November 2012, but my M-spike (currently is trending up ever slow slowly and is now at 2.15 g/dL, starting at 1.67 back in November '12).
My bimonthly FLC ratio history is 0.07, 0.05, 0.03, 0.03. Hypercalcemia was a concern on my last test, but I just found out that my high calcium was self-inflicted by me taking too much vitamin D3. It's now back down to normal since I stopped taking D3.
I'm just going to sit tight and wait for my renal biopsy results, which I should have done in the next few days. I've done enough homework so as not be caught like Bambi-in-the-headlights should I get diagnosed with LCDD, etc. I'll take it from there and see if I need to act on any of your great suggestions then.
One thing I am confused about is my nephrologist said he doesn't see enough protein in my urine to account for the amount in my blood, and that is why he suspects LCDD. Yet proteinuria is one of the things that is indicative of LCDD. Seems like my nephrologist's comment is at odds with this diagnostic criteria? What am I missing here?
Hope this thread is of help to somebody else if they go down this path.
Thanks again!
Yes, I am smoldering.
I get a full set of lab tests done every two months (SPEP, UPEP, BMP, IFX, etc, including free light chain tests) and I get a skeletal survey done every 6 months. Nothing has dramatically changed since I first got diagnosed back in November 2012, but my M-spike (currently is trending up ever slow slowly and is now at 2.15 g/dL, starting at 1.67 back in November '12).
My bimonthly FLC ratio history is 0.07, 0.05, 0.03, 0.03. Hypercalcemia was a concern on my last test, but I just found out that my high calcium was self-inflicted by me taking too much vitamin D3. It's now back down to normal since I stopped taking D3.
I'm just going to sit tight and wait for my renal biopsy results, which I should have done in the next few days. I've done enough homework so as not be caught like Bambi-in-the-headlights should I get diagnosed with LCDD, etc. I'll take it from there and see if I need to act on any of your great suggestions then.
One thing I am confused about is my nephrologist said he doesn't see enough protein in my urine to account for the amount in my blood, and that is why he suspects LCDD. Yet proteinuria is one of the things that is indicative of LCDD. Seems like my nephrologist's comment is at odds with this diagnostic criteria? What am I missing here?
Hope this thread is of help to somebody else if they go down this path.
Thanks again!
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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
Had my kidney biopsy yesterday and I'm awaiting the results. During that time, I got to see the detailed notes from my nephrologist and he astutely indicated that there may be an electrophysical phenomenon going on which would cause my kidneys to reject my Bence Jones proteins (free light chains, aka FLCs) and would therefore cause me not to have any FLCs in my urine. Spent my time in the hospital researching this and came up with the following for you science buffs.
In a nut, there are very rare situations where single FLC proteins (monomers) can combine chemically to form larger molecules (polymers) which may contain two (dimer) or four (tetramer) subunits of the FLC protein. The tetrameric configuration is thought to be simply too large to pass through the glomeruli (the little filtration tubes) of the kidney and therefore won't show up in your urine. There are also some thoughts that this rejection process in the kidney could instead be due to unique electrical properties of this polymeric configuration which causes the kidney to electrically repel these tetramers.
In this situation, you can therefore have FLC proteins in your blood (test positive for proteinaemia), but not in your urine (negative for proteinuria). Pretty wild. Will be interesting to see where this all goes. I'd rather have this going on than LCDD ... at least I think I do
For those of you that want to dive deeper into this very rare phenomenon, see below or google on "tetrameric Bence Jones":
ML Gallango et al, "Bence Jones Myeloma with a Tetramer of Kappa-Type Globulin in Serum," Clinical Chemistry, 1980 (full text pdf).
In a nut, there are very rare situations where single FLC proteins (monomers) can combine chemically to form larger molecules (polymers) which may contain two (dimer) or four (tetramer) subunits of the FLC protein. The tetrameric configuration is thought to be simply too large to pass through the glomeruli (the little filtration tubes) of the kidney and therefore won't show up in your urine. There are also some thoughts that this rejection process in the kidney could instead be due to unique electrical properties of this polymeric configuration which causes the kidney to electrically repel these tetramers.
In this situation, you can therefore have FLC proteins in your blood (test positive for proteinaemia), but not in your urine (negative for proteinuria). Pretty wild. Will be interesting to see where this all goes. I'd rather have this going on than LCDD ... at least I think I do
For those of you that want to dive deeper into this very rare phenomenon, see below or google on "tetrameric Bence Jones":
ML Gallango et al, "Bence Jones Myeloma with a Tetramer of Kappa-Type Globulin in Serum," Clinical Chemistry, 1980 (full text pdf).
Last edited by Multibilly on Sun May 12, 2013 10:25 pm, edited 1 time in total.
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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
Hi Multibilly,
Crossing my fingers for you and hoping you get good results! Interesting information!
Crossing my fingers for you and hoping you get good results! Interesting information!
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georgia - Name: georgia
- Who do you know with myeloma?: My dad :(
- When were you/they diagnosed?: 2002-MGUS-64yrs; 2013-Plasmacytoma-75yrs
- Age at diagnosis: 64
Re: Light chain deposition disease (LCDD) & multiple myeloma
Yipee. Clean biopsy. No LCDD. Huge relief.
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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
Congrats. What is going on with your kidneys then regarding the salt and protein issues from your first post? Hoping it was something simple and easily resolved.
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