Hi.
I had my first blood test March 2015, which revealed kappa of 230 mg/l.
This August it had risen to 930 mg/l, with a kappa / lambda ratio of approximately 500.
My doctor recommends a "watch and wait" strategy, as I have no significant CRAB symptoms.
I am worried about renal implications, but as I am otherwise quite fit, I am using the time to look into the different treatment regimens.
If anyone has any information on how high levels of kappa free light chains the body can endure without renal impairment, that will be appreciated.
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JohnC - Name: JohnC
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 47
Re: What free light chain levels will cause kidney damage?
Hi John,
I may be wrong, but I don't think there is any set FLC value for the question you asked. Besides, everyone is a snowflake when it comes to how their body responds to monoclonal gammopathies (as an example, my kidneys apparently reject my particular form of FLCs before they can even get inside and can cause any damage).
However, your lambda FLC level must also be lower than normal at about 1.9 mg/L (0.19 mg/dL), given your kappa and FLC ratio figures. Since your lambda is low, kappa is high and your FLC ratio is high, this "might" suggest bone marrow suppression. See this link:
http://www.thebindingsite.com/interpretation-of-freelite-results
Have you discussed the possible bone marrow suppression situation with your doctor? Have your last few CBC tests shown any significant decline in the markers it measures?
Lastly, if you are worried about renal sufficiency, you should also be tracking your serum creatinine levels, at a minimum. Has it been normal and holding fairly steady?
I may be wrong, but I don't think there is any set FLC value for the question you asked. Besides, everyone is a snowflake when it comes to how their body responds to monoclonal gammopathies (as an example, my kidneys apparently reject my particular form of FLCs before they can even get inside and can cause any damage).
However, your lambda FLC level must also be lower than normal at about 1.9 mg/L (0.19 mg/dL), given your kappa and FLC ratio figures. Since your lambda is low, kappa is high and your FLC ratio is high, this "might" suggest bone marrow suppression. See this link:
http://www.thebindingsite.com/interpretation-of-freelite-results
Have you discussed the possible bone marrow suppression situation with your doctor? Have your last few CBC tests shown any significant decline in the markers it measures?
Lastly, if you are worried about renal sufficiency, you should also be tracking your serum creatinine levels, at a minimum. Has it been normal and holding fairly steady?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: What free light chain levels will cause kidney damage?
Hi John,
Have you been diagnosed yet with symptomatic multiple myeloma? Or have you been considered to have smoldering multiple myeloma (or perhaps even MGUS) up until now?
On the issue of what free light chain levels may cause kidney damage, I agree with Multibilly that it will vary from person to person. My impression from what I've read here in the forum, in terms of both physician feedback and patient experiences, is that physicians don't tend to get overly concerned if the free light chain levels are in the 100s of mg/L. Usually you see doctors thinking of starting treatment of some sort no later, however, than when the levels get into the 1000s.
This seems to be confirmed by a statement at this link,
http://www.uptodate.com/contents/pathogenesis-and-diagnosis-of-myeloma-cast-nephropathy-myeloma-kidney
which describes serum free light chain levels of under 1500 mg/L as "low" and being unlikely to cause the sort of kidney damage you often see in myeloma patients.
One of the best ways to see whether, in your case, the level of your free light chains is starting to cause problems for your kidneys is to have a urine protein electrophoresis done, to see if there are free light chains in your urine. There usually are only low levels of free light chains in the kidneys if the serum free light chain levels are below the level that allows the kidneys to process them. If the serum free light chain levels are too high, on the other hand, the kidneys will start to be overwhelmed with processing them, and the free light chains start spilling into the urine at higher and higher levels. That, I believe, is when you can start getting damage to the kidneys.
Have you been diagnosed yet with symptomatic multiple myeloma? Or have you been considered to have smoldering multiple myeloma (or perhaps even MGUS) up until now?
On the issue of what free light chain levels may cause kidney damage, I agree with Multibilly that it will vary from person to person. My impression from what I've read here in the forum, in terms of both physician feedback and patient experiences, is that physicians don't tend to get overly concerned if the free light chain levels are in the 100s of mg/L. Usually you see doctors thinking of starting treatment of some sort no later, however, than when the levels get into the 1000s.
This seems to be confirmed by a statement at this link,
http://www.uptodate.com/contents/pathogenesis-and-diagnosis-of-myeloma-cast-nephropathy-myeloma-kidney
which describes serum free light chain levels of under 1500 mg/L as "low" and being unlikely to cause the sort of kidney damage you often see in myeloma patients.
One of the best ways to see whether, in your case, the level of your free light chains is starting to cause problems for your kidneys is to have a urine protein electrophoresis done, to see if there are free light chains in your urine. There usually are only low levels of free light chains in the kidneys if the serum free light chain levels are below the level that allows the kidneys to process them. If the serum free light chain levels are too high, on the other hand, the kidneys will start to be overwhelmed with processing them, and the free light chains start spilling into the urine at higher and higher levels. That, I believe, is when you can start getting damage to the kidneys.
Re: What free light chain levels will cause kidney damage?
Terry H and Multibilly,
Thanks for that info. It helps explain perhaps why my doctor hasn't been overly concerned with my kappa light chain numbers. Well, he is but he's going to have me try one last cycle of Pomalyst to see if I can get a response. My creatinine etc, are all good. My kappa was at 940 mg/L.
The biggest issue is my neutrophils dropping. Last cycle to 667 and then after 10 days back up to 1350. So I'm starting Pom tonight. I am, honestly, quite concerned about my neutrophils dropping. All my other labs, RBC WBC are all normal.
It's always so helpful to get information from others and I appreciate your comments. And it has helped me see a little clearer his reasoning.
Thanks for that info. It helps explain perhaps why my doctor hasn't been overly concerned with my kappa light chain numbers. Well, he is but he's going to have me try one last cycle of Pomalyst to see if I can get a response. My creatinine etc, are all good. My kappa was at 940 mg/L.
The biggest issue is my neutrophils dropping. Last cycle to 667 and then after 10 days back up to 1350. So I'm starting Pom tonight. I am, honestly, quite concerned about my neutrophils dropping. All my other labs, RBC WBC are all normal.
It's always so helpful to get information from others and I appreciate your comments. And it has helped me see a little clearer his reasoning.
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Christina - Name: Christina
- When were you/they diagnosed?: June2005
- Age at diagnosis: 52
Re: What free light chain levels will cause kidney damage?
John,
The new consensus criteria for the diagnosis of active Multiple Myeloma has much lower sFLC levels.
See the attached Beacon Article on this.
https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/
You will note that under the new standards, if the involved chain hits 100 or greater (yours was 940) and the ratio is 100 or greater (yours is 500) then you would be diagnosed as having active multiple myeloma irrespective of the CRAB features.
The new consensus is that treatment should begin.
There are two other markers that are mentioned in the article. The presence of any one of the three indicate active disease that should be treated.
"Each of these markers has been shown in two or more independent studies to be associated with approximately 80% or higher risk of developing myeloma-related organ damage within two years."
Based on this, if I was you I would seek another opinion. Your concerns are justified.
Ron
The new consensus criteria for the diagnosis of active Multiple Myeloma has much lower sFLC levels.
See the attached Beacon Article on this.
https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/
You will note that under the new standards, if the involved chain hits 100 or greater (yours was 940) and the ratio is 100 or greater (yours is 500) then you would be diagnosed as having active multiple myeloma irrespective of the CRAB features.
The new consensus is that treatment should begin.
There are two other markers that are mentioned in the article. The presence of any one of the three indicate active disease that should be treated.
"Each of these markers has been shown in two or more independent studies to be associated with approximately 80% or higher risk of developing myeloma-related organ damage within two years."
Based on this, if I was you I would seek another opinion. Your concerns are justified.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: What free light chain levels will cause kidney damage?
Hi Ron,
I hope this response finds you well!
I agree that the new IMWG diagnosis criteria includes an MDE definition which comes extremely close to fitting John's situation. While I have a great deal of respect for Dr. Rajkumar and the other esteemed doctors that developed this new diagnosis criteria, I would point out that not all multiple myeloma specialists are on board with starting treatment based on these new MDE definitions.
I would also underscore Dr. Rajkumar's closing statement in the referenced MB article:
"...Finally, no written criteria can substitute clinical judgment. In many cases, physicians will need to continue to use judgment in making decisions on which patients need immediate therapy, and in deciding when continued observation will be in the patients’ best interests"
Having said that, a second (or even third) opinion is always an excellent idea, especially when it comes to the decision of when to start treatment.
I hope this response finds you well!
I agree that the new IMWG diagnosis criteria includes an MDE definition which comes extremely close to fitting John's situation. While I have a great deal of respect for Dr. Rajkumar and the other esteemed doctors that developed this new diagnosis criteria, I would point out that not all multiple myeloma specialists are on board with starting treatment based on these new MDE definitions.
I would also underscore Dr. Rajkumar's closing statement in the referenced MB article:
"...Finally, no written criteria can substitute clinical judgment. In many cases, physicians will need to continue to use judgment in making decisions on which patients need immediate therapy, and in deciding when continued observation will be in the patients’ best interests"
Having said that, a second (or even third) opinion is always an excellent idea, especially when it comes to the decision of when to start treatment.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: What free light chain levels will cause kidney damage?
Thanks for your feedback, everybody, really apreciate it.
Multibilly:
I don't think my doctor has addressed "bone marrow suppression" specifically, but you are right about the corresponding levels; kappa FLC is high, and lambda FLC is low (5.1 mg/l in April, 1.8 mg/l in August 2015). Creatinine levels have been steady between 70 and 80 mmol/l, so that may indicate that renal functions are not at immediate risk.
Terry H:
Yes, I have been diagnosed with active multiple myeloma according to the new IMWG guidelines. (I looked into the daratumumab study for smoldering multiple myeloma, but was not eligible due to too high an FLC ratio). I will talk to me doctor about "urine protein electrophoresis". Thanks for the advice.
Ron:
Yes, you are right about the new IMWG criteria, and that according to them the therapy should start. However, my doctor, as well as two other "second opinions," advise "watch and wait". (The second opinion sources being one European IMWG member and one US specialist.)
On the one hand, I feel there are so many new treatment opportunities that have potential to be available, if waiting a little longer, on the other hand it may be easier to get a better response if treated early.
Also, living in Europe, choices of therapy might be a little restricted compared to US, but that belongs maybe in another thread in this forum.
Multibilly:
I don't think my doctor has addressed "bone marrow suppression" specifically, but you are right about the corresponding levels; kappa FLC is high, and lambda FLC is low (5.1 mg/l in April, 1.8 mg/l in August 2015). Creatinine levels have been steady between 70 and 80 mmol/l, so that may indicate that renal functions are not at immediate risk.
Terry H:
Yes, I have been diagnosed with active multiple myeloma according to the new IMWG guidelines. (I looked into the daratumumab study for smoldering multiple myeloma, but was not eligible due to too high an FLC ratio). I will talk to me doctor about "urine protein electrophoresis". Thanks for the advice.
Ron:
Yes, you are right about the new IMWG criteria, and that according to them the therapy should start. However, my doctor, as well as two other "second opinions," advise "watch and wait". (The second opinion sources being one European IMWG member and one US specialist.)
On the one hand, I feel there are so many new treatment opportunities that have potential to be available, if waiting a little longer, on the other hand it may be easier to get a better response if treated early.
Also, living in Europe, choices of therapy might be a little restricted compared to US, but that belongs maybe in another thread in this forum.
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JohnC - Name: JohnC
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 47
Re: What free light chain levels will cause kidney damage?
One's kidneys will absorb a certain amount of proteins that are filtered from the blood. The lambda molecule is 2x the size of the kappa molecule. After the kidney cannot absorb anymore of the lambda protein, it will try to pass it through the kidneys, but because it is a larger molecule it tends to clog up the kidneys with a waxy deposit. When that happens, the kidneys will slow down filtering out the urine and may even stop filtering. Excess kappa proteins will pass through and can be measured because they are small enough to pass through the kidney.
Check this out:
https://en.wikipedia.org/wiki/Serum_free_light-chain_measurement
Check this out:
https://en.wikipedia.org/wiki/Serum_free_light-chain_measurement
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caregiver
Re: What free light chain levels will cause kidney damage?
My specialist told me the proteins get caught in the nephrons (the filters of the kidney), and turn into crystalline structures that stop the filtering process. I have been told to drink 3 litres of fluid a day to keep my kidneys flushed and flush the proteins through.
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Salzmav - Name: Salzmav
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 52
Re: What free light chain levels will cause kidney damage?
I agree with much of what has been stated.
Especially the last 2 posters--Caregiver and Salzmav.
Protein clearance ( Renal) is not the same for everyone, as loop, nephril size and Protein size vary. Osmolarity also varies. Creatinine clearance is a sign, but so are other items.
I would practice good fluid management and stay close to contact with an MD, in the event of : -decreasing urine output, infection, spike fever, pain in back, dark or bloody urine, etc.
Hopefully, it will be " just" a stone. ( very painful in and of itself !)
If not, drainage, very close observation, further intervention, and meds may be necessary.
You can avoid ATN , or catch it promptly, by being observant and hydrated.
Good luck.
Especially the last 2 posters--Caregiver and Salzmav.
Protein clearance ( Renal) is not the same for everyone, as loop, nephril size and Protein size vary. Osmolarity also varies. Creatinine clearance is a sign, but so are other items.
I would practice good fluid management and stay close to contact with an MD, in the event of : -decreasing urine output, infection, spike fever, pain in back, dark or bloody urine, etc.
Hopefully, it will be " just" a stone. ( very painful in and of itself !)
If not, drainage, very close observation, further intervention, and meds may be necessary.
You can avoid ATN , or catch it promptly, by being observant and hydrated.
Good luck.
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Rneb
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