New to kappa light chain testing
Hi! I am new to this free light chain results as I had blood work done last August by a hematologist. I had high Kappa free light chain of 26.0 but the other two tests lambda and ratio were normal. The hematologist said my tests that she tested me for were normal. After experiencing some health issues lately I did my own research and discovered my light chain results myself as my red blood count stays somewhat low. I informed my PCP of my find and she referred me to a cancer specialist. On his first findings my Kappa light chain has gone down to 22.2 and the other two tests were normal. I'm new at this and am scared to death that it could be Cancer etc. Can anyone that has had experience with this inform me a little more. I do have another appointment scheduled with my Cancer doctor. I haven't been diagnosed with anything yet but am so scared of a cancer diagnosis..
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@kayabbott recently diagnosed w WM per BMB results Oncologist at Lowell Gen Hosp Cancer Ctr
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4 ReactionsGet a Bone Marrow Biopsy done w Local AND the Twilight Sedation in hospital daycare. Don't just get local cause there is anxiety anticipating painful needle into Bone w pressure from marrow and bone samples retracted. I recently got it done (same way) to diagnose my white blood cells WBC in my bone marrow producing excess (4200) abnormal # IgM antibodies (proteins) that led to diagnosis of Waldenstrom Macroglobulinemia (WM) a rare treatable blood cancer. No side effects from biopsy procedure. So don't freak out cause many blood test abnormal results aren't even cancer but best to know. Good luck. Lmk how u do.
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3 Reactions@barbarian1 That does hit one hard. I hope you have a good support network, and there are a lot more treatment options than even a few years ago. Once my high risk SMM reaches the threshold for treatment, I will start I-VRD. If my numbers hit a plateau, it could be a year or years, otherwise months. My doctor said I would have more energy once my kappa levels decrease. https://my.clevelandclinic.org/health/diseases/17951-waldenstrom-macroglobulinemia
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3 Reactions@barbarian1
I copied all my blood work results into the Claude app for clarification and to help with my questions for my oncologist. It's tedious but also interactive, and while I'm not advocating for it to supercede doctors, it has has been spot on so far. I find it a good tool which paired with this forum can be reassuring.
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3 Reactions@kjoed53 I've been diagnosed w Waldenstrom Macroglobulinemia for watch & wait w followup hema/onco visit June 5th
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1 Reaction@kjoed53 Claude app?
@barbarian1
Watch and wait is the best option for that I'm guessing. I'm also guessing that you have had a bone marrow biopsy already.
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1 Reaction@barbarian1
Claude is an AI app. It's free. I use it to understand my blood work prior to my rheumatologist or hematologist/oncologist visits. I also used it to explain my PET scan results. I like knowing what to expect and what to ask at each visit. It helps me to process what I hear faster so I'm not dwelling on one point and missing the next.
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3 Reactions@barbarian1
Did my bone marrow and fat biopsy in March at the Mayo Clinic without sedation .. local only..no problem what so ever.
No worries
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3 Reactions@kjoed53 yes I did. Ty.