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MGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio
Blood Cancers & Disorders | Last Active: Aug 3 1:59pm | Replies (203)Comment receiving replies
Howdy, I just happened upon this site. I was diagnosed with IGM MGUS back in 2012 and have been followed yearly for lab work. I go in for yearly labs in August and always get an uneasy feeling as this rolls around. Last year my IGM was (827 mg/dl high)and my Kappa light chains were (51.8 High). The Kappa Lambda ratio was also high at 3.65. My monocytes over the last 10+ years run a little high as do my Basophils. I had a bone marrow biopsy in 2012 when my light chains were normal. I ask every year if another bone marrow biopsy is warranted and get told no. I keep getting told treatments at this stage of the game are worse than just living with it. I feel like the numbers over the years tell me this is progressing, but the Hematologists/Oncologists don't seem to get excited. Watchful waiting is what I get told repeatedly, but that is hard to do sometimes. Any advice, Thank You. TK
Replies to "Howdy, I just happened upon this site. I was diagnosed with IGM MGUS back in 2012..."
@tk121
Greetings! I’m glad you stumbled upon us. Welcome!
You might ask your hem/onc doc at what threshold would there be concern. I know exactly what you mean about pre-visit anxiety. I had labs and scans on Thursday as a matter of fact. Typically I am a bit anxious until after I see my hem/onc guy.
Early on, my numbers creeped up and I asked him about the threshold of concern. He took the time to explain his reasoning and I did a bit of reading on my own which reenforced his strategy. I am 72 but definitely NOT in the “hey you have to die of something” camp. I want to know that there is a plan that I can be on board with.
If your hem/onc doc is unwilling or unable to explain the plan to your satisfaction, you might ask for a second opinion. Can’t hurt.
I am convinced that anxiety contributes to my overall health negatively. I make it a point to avoid it whenever possible and to seek out useful information from my providers.
You can ask for a chat with your doc by phone, telehealth or in person before your next appointment if you are stressed. Does that make sense for your situation? Will you let me know how it goes if not earlier, in August?
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I also have MGUS and am under the care of an oncologist who also isn’t worried about my low numbers.
Every 6 mos I get labs done, and a skeletal bone scan done to look for tumors, every year.
So far skeletal survey is negative, no tumors thank god!
I did have a bone marrow biopsy done 7-8 yrs ago by another oncologist where I was living then.
That was negative also.
I’m not really understanding these kappa light chains etc, but I leave it to the professionals to manage my tests.