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MGUS FLC Ratio decreasing: Concerned
I am 25 M, and I diagnosed with IGG Lambda MGUS 2 years ago. My protein when diagnosed was 0.4, but now it measures 0.7. It has gone to 0.6 in a year and is now 0.7. My FLC ratio was 0.48, but now is 0.27, at the cusp of out of range. It has always been decreasing since diagnosed but it scares me. Because of my age, my hematologist has put me on a 4-6 month check for now. I even got a BMB last July and it confirmed 3.4% plasma cells involvement, showing MGUS. How much does the ratio fluctuate? I know one chain increasing is not ideal, but it is whats happening and I cannot control it. I am vegeterian, try to not eat junk food and regular exercise. Has anything helped to stay stable?
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I'm 69 F with kappa light chain MGUS. My kappa/lambda ratio (7.76) has been slowly ramping up over the 8 years since diagnosis. Tumeric (curcumin) with black pepper (increases curcumin absorption) helps with tumor suppression in lab tests; don't know if it works with us, but I eat a lot of tumeric (good in curries, stews, hot chocolate). Tumeric is cheaper in Indian markets. I keep a food log (started with celiac 14 years ago) to see if any things hit me (gluten, some legumes and processed foods, and NSAIDs) through bloating, fatigue, or other symptoms. I'm also low sugar and no artificial sweeteners. Excessive weight gain is an issue with various diseases, so I keep my weight down and exercise a lot. Only a small percentage of MGUS progresses to cancer and hopefully ours doesn't, but just having it is stressful. Being vegetarian and minimising junk food is good. Make sure you get enough Omega 3 fatty acids. Escaping mentally is important, doing fun things and avoiding stress. MGUS unfortunately is something we have to live with, hopefully for decades. There are a number of MGUS peer reviewed papers in ResearchGate; they are written to scientists so the terminology can be tricky. I'm a scientist, maybe why my post is written like a geek or obsessive person.
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3 ReactionsHi,
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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1 Reaction@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?
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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1 Reaction@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.
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3 ReactionsYour 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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2 Reactions@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.
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6 ReactionsHi:
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.
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2 ReactionsIts 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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1 ReactionSounds like they are being thorough.