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How high should my Kappa light chain continue to rise before I worry.?
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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Can anyone comment whether the serum FLC kappa to lambda ratio range is the same as the bone marrow FLC kappa to lambda ratio range? That is, roughly 0.26 - 1.65 if normal?
@kayabbott thanks for the UK link. That’s one of the most understandable explanations I’ve read. ❤️
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1 ReactionAre you seeing a myeloma specialist? If not, get one even if you have drive a long way. My light chain ratio is 93 (I have light chain smoldering mm). My myeloma specialist told me not all light chains are the same: by way of example, mine are not damaging my kidneys so I don’t need treatment. You need to consult with a myeloma specialist about YOUR light chains.
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1 Reaction@barbarian1
Hello! Somehow I found this post of yours from last year, so glad I did! It makes me feel better knowing I'm not asking for anything out of the ordinary for MGUS patients.
My numbers are just a bit higher than yours, I've practically begged for an initial bone marrow biopsy due to the MGUS, other bothersome symptoms, and the fact my brother had multiple myeloma and a sister had ALL which mutated into AML, but my local general oncologist (very qualified and professional, but not a hematologist even) said he wouldn't do a biopsy until my numbers rise dramatically!
Your post gave me inspiration to ask for a 2nd opinion and convince my primary doctor I'm not wanting to stop seeing my current oncologist, that I really like him and feel he's totally qualified, but I just want an MM specialist. Wishing you well on your journey!
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2 Reactions@barbarian1 I'm no Dr but yes they are low. Get a 2nd opinion.
I think some of these tests are so doctors can find another willing patient.
@siouxbee19 goD can bless and save u. Just pray. ❤️🙏
@siouxbee19 God bless u! 🙏
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1 Reaction@siouxbee19
Your post is giving mixed signals which is totally okay, but it's obvious that you're not happy and don't have full confidence in your current oncologist. That's okay too. Please get a 2nd opinion for your own peace of mind.