How high should my Kappa light chain continue to rise before I worry.?

Posted by tmcclint92 @tmcclint92, Apr 11 7:51pm

My Kappa light chains continue to rise each time I have my labs run. They are now 90. The ratio rises also. But everything else including my Ig numbers are good. How high is too high? I was diagnosed with MGUS in April 2021, 2 months later in June 2021, they said I had Smoldering Myeloma. Two months later in August they diagnosed me with Multiple Myeloma. They put me on RVD therapy for 2 months and things looked good. Then they told me I was back to MGUS. Is that possible? All along my Kappa light chains continue to rise a little everytime. I just don't feel they're getting the big picture and I don't feel like they're taking anything seriously. My 1st bone marrow biopsy in August 2021 showed 30% cancer cells. The second one in November 2022 showed 3%. I just had another one yesterday and while I was lying there, the NP made a remark to the technician helping her, "That's weird, it's dry." Not exactly what you want to hear. And I could feel her moving the needle up and down several times. After she was done she said everything was fine. Who knows? I won't get the results back for 2 weeks. One oncologist told me I was a cancer doctors worst nightmare because they didn't know what to do with me because some numbers are good yet others are not so they don't know how to treat me. Meanwhile I'm on no kind of maintenance drug. I haven't been on anything since October of 2021 after 2 months of chemo. Does anyone have any advice?

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kayabbott | @kayabbott | Apr 12 8:13am

I was diagnosed with MGUS 8 years ago (I'm 69) and my kappa and kappa/lambda have slowly been ramping up; kappa is now 132 mg/L and kappa/lambda is 13. My hematologist says these plus other markers aren't high enough yet for a bone marrow biopsy. I do take 2000 mg/day of bioavailable curcumin (the active ingredient in turmeric, which is otherwise poorly absorbed); we'll see if that affects labs. No MGUS symptoms yet. I like to think of the plasma cells as being deranged, rather than precancerous. Here is one link for kappa MGUS: https://pubmed.ncbi.nlm.nih.gov/32772824/#:~:text=The%20reference%20standard%20to%20classify,and%20(3)%20monoclonal%20immunoglobulin.

Ginger, Volunteer Mentor | @gingerw | Apr 12 1:29pm

@tmcclint92 Is your doctor a hematologist oncologist? If not, can you be referred to one? I see that the results you posted come from Indiana State University. Many of us will tell you to try to see a specialist who has experience with MGUS and multiple myeloma, rather than a general practitioner.

If the concensus is "you are an oncologist's nightmare" have you considered being seen at Mayo Clinic? I'd wager they won't say that! Here is the link to request an appointment at Mayo Clinic: http://mayocl.in/1mtmR63
What do you think, want to give that a try?
Ginger

aczatx47131 | @aczatx47131 | Apr 13 8:57am

Hematologists treated all kinds of blood cancers. They are generalists. A myeloma specialist treats SMM, MGUS and myeloma mostly.

There are websites to help you find a myeloma specialist. I watched videos on Healthtree.org and found a specialist to help me with biochemical relapse. I just called him up and made an appointment.

I have IgA kappa myeloma. Only 20% of myeloma patients are IgA kappa, about 6,000 people in US. The M-spike is not reliable for us. We need serum immunoglobulin to determine if the myeloma is progressing. My Austin hematologist did not know this. My Atlanta specialist did.

A myeloma specialist could help answer your questions.
https://healthtree.org/myeloma/community/directory
Here is a SmartPatients.com conversation with resources for Newly Diagnosed myeloma folks. You will have to register with SmartPatients.com to read the conversation.
https://www.smartpatients.com/conversations/resources-for-newly-diagnosed#top
My Austin hematologist said I needed a second line of treatment when my kappa numbers reached 200. However I have no CRAB symptoms so I am not starting second line yet. My Atlanta specialist knew about biochemical relapse. All of this is explained in videos at Healthtree.org University.

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