increase in kappa free light chains and in ratio with lambda Lt chains

Posted by plmblk @plmblk, 2 days ago

I was diagnosed with MGUS 6 1/2 years ago. Recently the kappa free light chains have increased a fair amount. The monoclonal Band #1 ELP has gone up to .4, and the ratio of Kappa to lambda was 2.62, which doesn't sound very high to me, but both were termed "high". Is this worrisome or not?

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You don't mention whether you have any other conditions or if you're on any meds. What does your doctor say about the current numbers? I have SMM which was diagnosed while I was on prednisone for PMR, and my Kappa lambda ratio has increased from 8.12 to 10.26 since I have been on prednisone, but it's possible that the prednisone is affecting my kappa and lambda numbers differently and causing the change in ratio. I'm on a fast taper off prednisone and won't know for sure until I get to 5mg, which no longer significantly affects my SMM blood work. I'm concerned but optimistic that my new blood work next month will show that I'm still in the SMM range, and not MM.

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I was diagnosed with MGUS 10 years ago and it started ramping up 3 years ago, after getting covid. I'm in SMM range now with an M spike of 1.4 (problematic when 2 or higher), kappa/lambda of 93 (preferably below 20), and kappa of 1,290 (1.65 and less is better), but still not high enough for standard treatment. You are in the wait and see mode, bloodwork every 6 mo to see if your numbers ramp up or stay stable. MGUS does not progress to MM for most people. Next month I will likely start a clinical trial with bispecific antibodies (generally used with refractory and stage 4 MM), to see if progression to MM can be stopped or slowed by years. I had a baseline BMB (bone marrow biopsy) 10 years ago with 5% deranged cells (normal about 2.5% and less), MGUS range. My BMB two years ago was 16%. Things to consider are healthy diet, exercise (weights and aerobic), and managing stress. Having supportive friends/family is good too, even without illnesses. Some people with MGUS/SMM/MM take bioavailable curcuminoids found in turmeric, initial research suggests that at elevated doses the curcumin can slow tumor growth. Whether it works for us is mixed because it is very poorly absorbed (check with a natural grocery store on pill options). https://www.cancer.gov/about-cancer/treatment/cam/hp/curcumin-pdq

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Not sure why those are considered “high”. If you have were diagnosed with MGUS 6 1/2 years ago and your M-Spike is . 4 that doesn’t appear to be alarming. What was it 6 1/2 years ago. Kappa Lambda flc ratio while elevated still seems to be MGUS level.

I was diagnosed with MGUS 2 1/2 years ago. My M-Spike was .6 and flc ratio was 9.1 with lambda being elevated.

I am now at 1.59 M-Spike and 30.1 flc ratio. Intermediate SMM.

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If you take supplements, please discuss with your doctor first. Not all supplements are safe and dosage matters. Long term studies can flip the script on supplement benefits and safety. Look at the recent studies involving fish oil supplements as an example.

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Profile picture for kjoed53 @kjoed53

If you take supplements, please discuss with your doctor first. Not all supplements are safe and dosage matters. Long term studies can flip the script on supplement benefits and safety. Look at the recent studies involving fish oil supplements as an example.

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@kjoed53 Ground flax seed and flax oil can replace fish oil supplements, ground seed is great to add to foods and is high in fiber and Omega 3 and 6. FDA does not regulate supplements, so they can be hit or miss on listed ingredients as well. Their main advantage, at least with curcuminoids, is a bit of hope that they might help.

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Profile picture for kayabbott @kayabbott

@kjoed53 Ground flax seed and flax oil can replace fish oil supplements, ground seed is great to add to foods and is high in fiber and Omega 3 and 6. FDA does not regulate supplements, so they can be hit or miss on listed ingredients as well. Their main advantage, at least with curcuminoids, is a bit of hope that they might help.

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@kayabbott Hope is only an advantage if it's not false hope. It's still a good idea to talk about supplement use, which multivitamins you take, if you take eye vitamins, or any other adjustments you make. If you start running 5Ks your doc needs to know that too to explain the new stress to your legs and possibly new fatigue. Your doctor won't tell you to stop taking something unless it might interfer with treatment or has a known risk. He knows the value of hope too. But the reality is, if you're taking something like an eye vitamins it doesn't always stay in it's lane The body can't sort things out and direct them to specific areas in most cases. They just circulate and end up wherever they're welcome. So talk to the person who knows what might not be welcome

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Profile picture for kansasjayhawk @kansasjayhawk

@kayabbott Hope is only an advantage if it's not false hope. It's still a good idea to talk about supplement use, which multivitamins you take, if you take eye vitamins, or any other adjustments you make. If you start running 5Ks your doc needs to know that too to explain the new stress to your legs and possibly new fatigue. Your doctor won't tell you to stop taking something unless it might interfer with treatment or has a known risk. He knows the value of hope too. But the reality is, if you're taking something like an eye vitamins it doesn't always stay in it's lane The body can't sort things out and direct them to specific areas in most cases. They just circulate and end up wherever they're welcome. So talk to the person who knows what might not be welcome

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@kansasjayhawk Regarding "eye vitamins", are you referring to AREDS2 for AMD? If so, the elevated levels of copper, zinc, and fat soluble vitamins in these, and some multivitamins can cause extra stress if someone has compromised kidneys. Best to check with a nephrologist on that. Primary care doctors are not well versed in supplements or nutrition (I learned that most doctors have limited knowledge of nutrition after I developed celiac disease 16 yo).

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Yes. Areds2 were what I was referencing. Many people are told to take them by doctors who don't understand the parameters and recommendations of the original study. And you're also correct that the role of nutrition is too often ignored or downplayed. But, doctors do understand drug interactions and will read a label if they have to to understand what you're taking. Assuming thedictor is ignorant isn't going to build much trust 🙂

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