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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.

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Replies to "You were diagnosed with MM with a kappa level of 200? I have IgA kappa MGUS..."

Hello, kayabbott,

I hope my reply is helpful to you. Healthtree has wonderful videos with nationally recognized hematologists explaining details of myeloma. I have found these to be very helpful. In fact, that is how I found my myeloma specialist.

As I remember, I was diagnosed with myeloma in May 2019 when my kappa/lambda ratio was consistently over 100 for a number of weeks. My BMB showed around 15% of plasma cells.

In September 2019 I had a stem cell transplant which achieved a very good partial response. I was not in remission after the SCT. I have the 1q gain mutation.

I began Velcade every 14 days as maintenance therapy in November 2019. Slowly my kappa levels rose from the 30s in Nov 2019 to 200 in August 2023. When my kappa level reached 200 consistently, I was considered to be in biochemical relapse. Biochemical relapse means, as I understand it, that my kappa levels are above 200 but my hemoglobin, creatinine, and calcium are within normal limits and that I have no bone lesions. In other words, I have no CRAB symptoms, just high kappa levels.

On myeloma.org, there is an article that states that M-spike measurements are not reliable for IgA kappa myeloma because the little kappa molecule does not separate cleanly during SPEP. I have always had two M-spikes. So my myeloma specialist in Atlanta advises that I watch my kappa levels and the measurement of my IgA immunoglobulin to determine if my cancer is progressing.

Now my IgA fluctuates between 1200-1400. My two M-spikes vary from 0.7 to 0.9 and 0.2 to 0.3.

My kappa levels are around 215-230. So I am still in biochemical relapse because I have no CRAB symptoms. I am still in my first line of treatment, Velcade.

I think my kappas are stable because I sprinkle 1 teaspoon of the spice, turmeric, on my food four times a day. If I snack on popcorn, I sprinkle turmeric on my popcorn.

Every six months I get either a PET scan or an MRI, alternating them, to see if I have myeloma bone lesions.

Since the lines of treatments are not unlimited, I want to continue on Velcade as long as possible. I have neuropathy which I manage with diet, exercise, and shoes with adequate support.

Let me know if I may be helpful to you.

Claire