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MGUS FLC Ratio concern

Posted by hpatel334 @hpatel334, Jul 11 5:54pm

Hi,
I am 25M, diagnosed with MGUS at age 22 in Dec 2021. Since then my FLC ratio (IGG Lambda K/L = 0.49) has gone to (K/L = 0.23). My M Protein was 0.4 and now it is 0.8. I am concerned about the steady decrease in the ratio and increase in the M Protein. I have had a BMB as well for baseline measurements, and it showed 3.4% plasma cells. My doctor tells me I am stable, but the trend is worrisome. I have even picked up exercising in the last 1 year, added turmeric (started January 2024), and I am vegeterian. Has anyone's ratio changed or improved? I am looking for insight as my age and MGUS diagnosis worries me a lot.

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Mentor
Patty, Volunteer Mentor | @pmm | Jul 12 7:56am

@hpatel334
Hi! You are a statistical anomaly with your youth having been diagnosed at such an early age. How did they discover MGUS when you were diagnosed?

REPLY
1 reply
hpatel334 | @hpatel334 | Jul 12 8:02am
In reply to @pmm "@hpatel334 Hi! You are a statistical anomaly with your youth having been diagnosed at such an..." + (show)
@pmm

@hpatel334
Hi! You are a statistical anomaly with your youth having been diagnosed at such an early age. How did they discover MGUS when you were diagnosed?

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I discovered it while going over some blood work for my liver enzymes. They were elevated at that time, and then returned back to normal. However, I got MGUS diagnosis as a gift of that! I was 22 years old at that time 🙁

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Mentor
Patty, Volunteer Mentor | @pmm | Jul 12 8:56am

@hpatel334
Amazing!
I'm not an expert, but a patient but I believe that my hem/onc doc would be pleased by declining numbers and especially the ratio. Mine were steadily increasing but my last bloodwork showed regression to the lower numbers almost identical to my initial blood work when I was diagnosed three years ago. He didn’t dance, but he did crack a smile which for him is a rare gift.
I find it comforting that progression to multiple myeloma is such a low risk. Beyond that, the advances in treatment over the past decade are remarkable.
The mind/body connection is something that is within my means to control. You are doing all the right stuff with exercise, diet and diligence. Finding that balance that allows us to live life fully and enjoy each day was for me, the next step. My physical self responds when my head is in a good place.
Having said all that, when one gets results that are inconsistent with expectations you do need to ask all the questions. Can you ask your physician to speculate or explain this change? I would be really curious to know as well if you feel comfortable letting me know.

REPLY
1 reply
hpatel334 | @hpatel334 | Jul 12 10:03am
In reply to @pmm "@hpatel334 Amazing! I'm not an expert, but a patient but I believe that my hem/onc doc..." + (show)
@pmm

@hpatel334
Amazing!
I'm not an expert, but a patient but I believe that my hem/onc doc would be pleased by declining numbers and especially the ratio. Mine were steadily increasing but my last bloodwork showed regression to the lower numbers almost identical to my initial blood work when I was diagnosed three years ago. He didn’t dance, but he did crack a smile which for him is a rare gift.
I find it comforting that progression to multiple myeloma is such a low risk. Beyond that, the advances in treatment over the past decade are remarkable.
The mind/body connection is something that is within my means to control. You are doing all the right stuff with exercise, diet and diligence. Finding that balance that allows us to live life fully and enjoy each day was for me, the next step. My physical self responds when my head is in a good place.
Having said all that, when one gets results that are inconsistent with expectations you do need to ask all the questions. Can you ask your physician to speculate or explain this change? I would be really curious to know as well if you feel comfortable letting me know.

Jump to this post

Your ratio going down is good, because your light chains are dominated by Kappa, not lambda. A K/L ratio going down if you are lambda dominant means the lambda chain is going up which is not good news. So I am considered abnormal ratio by that. I really like your encouragement, thank you for your advice! I am yet to meet my physician on Monday so I will know more there! She says I am stable but keeps an eye on these numbers.

REPLY
1 reply
Mentor
Patty, Volunteer Mentor | @pmm | Jul 12 1:13pm

@hpatel334
Watch and wait is a test of our patience. It’s like being surrounded by chaos, but we center ourselves to feel calm in mind and heart. To do otherwise is an exercise in futility. You’ve got this.

REPLY
2121 | @leslie2121 | Jul 13 9:59am
In reply to @hpatel334 "Your ratio going down is good, because your light chains are dominated by Kappa, not lambda...." + (show)
@hpatel334

Your ratio going down is good, because your light chains are dominated by Kappa, not lambda. A K/L ratio going down if you are lambda dominant means the lambda chain is going up which is not good news. So I am considered abnormal ratio by that. I really like your encouragement, thank you for your advice! I am yet to meet my physician on Monday so I will know more there! She says I am stable but keeps an eye on these numbers.

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Hi:
I’m lambda dominant too. My K/L ratio fluctuates between 0.46-0.36.
And another oddity is I have as many as 4 monoclonal peaks- all tiny, unquantifiable, and often seem to “disappear”.
My SPEP has shown 2 “IgM lambda, IgG kappa & IgG lambda”. Only the IgG lambda was identified this last May.
So the docs are scratching their heads but aren’t really concerned I will progress. We are all so unique and difficult to compare our labs.
Patty has excellent advice.
Try not to get caught up in the “what ifs”. Ask all your questions Monday and then enjoy life.

REPLY
1 reply
hpatel334 | @hpatel334 | Jul 15 7:09pm
In reply to @leslie2121 "Hi: I’m lambda dominant too. My K/L ratio fluctuates between 0.46-0.36. And another oddity is I..." + (show)
@leslie2121

Hi:
I’m lambda dominant too. My K/L ratio fluctuates between 0.46-0.36.
And another oddity is I have as many as 4 monoclonal peaks- all tiny, unquantifiable, and often seem to “disappear”.
My SPEP has shown 2 “IgM lambda, IgG kappa & IgG lambda”. Only the IgG lambda was identified this last May.
So the docs are scratching their heads but aren’t really concerned I will progress. We are all so unique and difficult to compare our labs.
Patty has excellent advice.
Try not to get caught up in the “what ifs”. Ask all your questions Monday and then enjoy life.

Jump to this post

Its nice to see that your ratio actually fluctuates! I wish mine had too and did not follow such a decreasing tend over time. Thank you for your words of encouragement. My doctors decided to get me scheduled for another PET Scan to rule out anything serious.

REPLY
1 reply
2121 | @leslie2121 | Jul 15 11:02pm
In reply to @hpatel334 "Its nice to see that your ratio actually fluctuates! I wish mine had too and did..." + (show)
@hpatel334

Its nice to see that your ratio actually fluctuates! I wish mine had too and did not follow such a decreasing tend over time. Thank you for your words of encouragement. My doctors decided to get me scheduled for another PET Scan to rule out anything serious.

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Sounds like they are being thorough.

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