Anitamaria,
Regarding renal impairment being a function of light chain escape, I think you need to put the magnitude of the FLC numbers into perspective (FLCs themselves are what causes the renal impairment when one has light chain escape).
Per your earlier post "his latest labs showed a FLC Kappa of 3.71, FLC Lambda of 1.35 with a ratio of 2.75" (I'm assuming these numbers are expressed in mg/dL).
These FLC values are not that significant and are in line with what an early MGUS patient might have. I'm not a doc, but I just wouldn't expect these kinds of nearly-normal FLC numbers to impair renal function.
Forums
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Change in multiple myeloma clone at relapse
Thanks Multibilly for posting that link. It describes exactly what has happened to me. I am a Free Light Chain escaper at relapse. My serum light chains have been as high as 3000 mg/L in the last few months, my last one was 904 mg/L and my IGG has been just slightly elevated or normal. At diagnosis IGG was much higher and kappa did not get above 60 mg/L if I remember correctly. I read about all these people concerned about light chains being above 100 mg/L and I think to myself with a kappa level as high as 3000 mg/L at times I must be really screwed then but so far I have not seen adverse effects and my kidney labs have been good. Not that I am not concerned or nervous about this situation. At what level does can my kidneys start be affected? I do not know. With half-life in hours for kappa light chains and such high levels in the serum still I think my kidneys much be working very hard to removing all the light chain and the their limits for light chains to build up that high. And from my past experience feeling the effects of kidney failure is not something that happens over weeks but suddenly comes on in just a few days.
I would be very interested in any information about the dangers of high light chains and at what levels they can start to become a serious concern, but I can see where this really depends on the individuals existing kidney health and other health conditions, so there may not be a general rule for everybody.
I would be very interested in any information about the dangers of high light chains and at what levels they can start to become a serious concern, but I can see where this really depends on the individuals existing kidney health and other health conditions, so there may not be a general rule for everybody.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Change in multiple myeloma clone at relapse
Hi Eric
It's pretty difficult to find research on the light chain only variety and the implications of the relative and absolute changes in light chains vis a vis multiple myeloma progression.
Our doc talked about it with us about six months ago. The half life of FLC are pretty short (ie 2-6 hours). The doc said he's had patients doing well with patients at 8K (mg/L) and those who are really ill at 400 (mg/L). As with most thing myeloma, it's an individual thing. In our case, light chain only means the FLC test, despite its limitations, is used to track the cancer. 24 hour urine is sometimes used as a tracking tool.
It's been a roller coaster ride for us since diagnosis. Diagnosis included renal impairment. Not all renal impairment with multiple myeloma is the same. We've had a nephrologist on our team throughout the course of the disease. We've followed a modified kidney diet and upped fluids to at least 2 L/day. A guideline is divide your weight in pounds by 2. The result is the daily goal for intake, measured in fluid ounces. Creatinine levels above 2.0 may well exclude patients from clinical trials. The docs take a closer interest if the # goes over 3.0.
Hope that helps.
It's pretty difficult to find research on the light chain only variety and the implications of the relative and absolute changes in light chains vis a vis multiple myeloma progression.
Our doc talked about it with us about six months ago. The half life of FLC are pretty short (ie 2-6 hours). The doc said he's had patients doing well with patients at 8K (mg/L) and those who are really ill at 400 (mg/L). As with most thing myeloma, it's an individual thing. In our case, light chain only means the FLC test, despite its limitations, is used to track the cancer. 24 hour urine is sometimes used as a tracking tool.
It's been a roller coaster ride for us since diagnosis. Diagnosis included renal impairment. Not all renal impairment with multiple myeloma is the same. We've had a nephrologist on our team throughout the course of the disease. We've followed a modified kidney diet and upped fluids to at least 2 L/day. A guideline is divide your weight in pounds by 2. The result is the daily goal for intake, measured in fluid ounces. Creatinine levels above 2.0 may well exclude patients from clinical trials. The docs take a closer interest if the # goes over 3.0.
Hope that helps.
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philatour - Who do you know with myeloma?: spouse
Re: Change in multiple myeloma clone at relapse
Philatour,
Thanks for the reply. I suspected that at what levels do light chains become a significant issue varies a lot from individual and your doc seems to have said the same. So what can you do? Just monitor kidney health till it declines on lab test and by then it may be too late to do much? And even then what can you do? Does dialysis remove light chains? How often would you have to have dialysis with a light chain half-life of just hours? Every day? Seems the best strategy is to get the light chain levels down to a reasonably level by finding an effective treatment for the myeloma and that is what I am trying to do now.
I am starting to think I many need to ask for a consult to talk with an internal medicine specialist or kidney specialist about light chains and if they cannot be reduced by reducing the myeloma that is producing them what that might lead to and what the options are, which may not be that good. If at all possible I would not want to wait till it is too late do anything about it. Are there more lab tests than the ones I am currently taking that could give more warning time of impending kidney failure? That is another question I would have.
Thanks for the reply. I suspected that at what levels do light chains become a significant issue varies a lot from individual and your doc seems to have said the same. So what can you do? Just monitor kidney health till it declines on lab test and by then it may be too late to do much? And even then what can you do? Does dialysis remove light chains? How often would you have to have dialysis with a light chain half-life of just hours? Every day? Seems the best strategy is to get the light chain levels down to a reasonably level by finding an effective treatment for the myeloma and that is what I am trying to do now.
I am starting to think I many need to ask for a consult to talk with an internal medicine specialist or kidney specialist about light chains and if they cannot be reduced by reducing the myeloma that is producing them what that might lead to and what the options are, which may not be that good. If at all possible I would not want to wait till it is too late do anything about it. Are there more lab tests than the ones I am currently taking that could give more warning time of impending kidney failure? That is another question I would have.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Change in multiple myeloma clone at relapse
Most centers of excellence that deal with myeloma and/ or amyloidosis should have nephrologists on staff who are experts in light chains + kidney function. Even among nephrologists, this is sort of esoteric.
In all my time dealing with amyloid and myeloma, I've never heard of anyone ever having dialysis in order to reduce light chain numbers. They must not be dialyzable. Of course, people do get dialysis AFTER the light chains have destroyed their kidneys, but it's not to remove them - it's to remove all the other junk that the kidneys can no longer deal with.
I remember when I was researching amyloidosis, I learned that many experts believe that light chains have a directly toxic effect on tissues, and that kidneys seem to be particularly sensitive to this. Remember, not many free light chains are supposed to be floating around the blood out there in the body. They should be tied up in complete antibodies, but because the light chains are faulty, they can't join the other components of antibodies.
In all my time dealing with amyloid and myeloma, I've never heard of anyone ever having dialysis in order to reduce light chain numbers. They must not be dialyzable. Of course, people do get dialysis AFTER the light chains have destroyed their kidneys, but it's not to remove them - it's to remove all the other junk that the kidneys can no longer deal with.
I remember when I was researching amyloidosis, I learned that many experts believe that light chains have a directly toxic effect on tissues, and that kidneys seem to be particularly sensitive to this. Remember, not many free light chains are supposed to be floating around the blood out there in the body. They should be tied up in complete antibodies, but because the light chains are faulty, they can't join the other components of antibodies.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Change in multiple myeloma clone at relapse
Hi Eric
At diagnosis we had plasmapheresis to see if it would knock down the light chains by at least 60%. It worked. It's controversial in that it will not keep the light chains at bay on its own. Induction was CyBorD. Response was terrific for 2 months; light chains started to climb again. Auto stem cell at 5 months. Relapse 8 months afterwards. Post relapse, it's been working our way through treatments to find something that holds the light chains in check. As Edison would have said, we now know a lot of ways which do not curb light chains for a sustainable period.
Not all kidneys have the same injury characteristics. Kidneys may be the more acute problem at times with multiple myeloma; or light chains may be the more acute problem even with ongoing renal impairment. In our case, light chains have been the more acute problem. Started Darzalex today. Will know more in 4 weeks as to responsiveness.
There's a group, the International Kidney and Monoclonal Gammopathy Research Group, working on delineating reduction strategies for free light chains, definitions of type of kidney injury. We are tracking their progress for addressing this crucial aspect of the multiple myeloma disease.
At diagnosis we had plasmapheresis to see if it would knock down the light chains by at least 60%. It worked. It's controversial in that it will not keep the light chains at bay on its own. Induction was CyBorD. Response was terrific for 2 months; light chains started to climb again. Auto stem cell at 5 months. Relapse 8 months afterwards. Post relapse, it's been working our way through treatments to find something that holds the light chains in check. As Edison would have said, we now know a lot of ways which do not curb light chains for a sustainable period.
Not all kidneys have the same injury characteristics. Kidneys may be the more acute problem at times with multiple myeloma; or light chains may be the more acute problem even with ongoing renal impairment. In our case, light chains have been the more acute problem. Started Darzalex today. Will know more in 4 weeks as to responsiveness.
There's a group, the International Kidney and Monoclonal Gammopathy Research Group, working on delineating reduction strategies for free light chains, definitions of type of kidney injury. We are tracking their progress for addressing this crucial aspect of the multiple myeloma disease.
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philatour - Who do you know with myeloma?: spouse
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