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How high should my Kappa light chain continue to rise before I worry.?
Blood Cancers & Disorders | Last Active: Jul 24 8:56pm | Replies (7)Comment receiving replies
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.
Replies to "Hematologists treated all kinds of blood cancers. They are generalists. A myeloma specialist treats SMM, MGUS..."
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You were diagnosed with MM with a kappa level of 200? I have IgA kappa MGUS (9 years), and my hematologist told me it wouldn't be SMM until my kappa levels likely got into the 1000's (currently 378 and kappa/lambda is 32). My IgA is ~700, and my bone marrow biopsy last summer had 15% plasma cells; doctor said my other bloodwork and absence of any CRAB symptoms indicated still MGUS. As with you, minimal M spike. A BMB os 10% plasma cells is the general start for SMM, but the deranged plasma cells are not evenly distributed in the marrow, so my percentage may be less.