M-Spike, High Kappa and Kappa/Lambda Ratio
After experiencing chronic diarrhea for > four weeks, I decided to contact my gastro doctor. He ordered blood work and performed a colonoscopy and upper endoscopy with various biopsies. The colonoscopy, upper endoscopy and biopsies showed no sign of cancer or microscopic colitis, however the blood work showed a quite elevated IgA level. He referred me to a hematologist/oncologist who did further blood work, the results of which showed:
• Borderline low white blood count
• Borderline high red cell distribution width
• Low lymphocytes
• Low monocytes
And the most troublesome results:
• Kappa Free Light Chain Level: 290.7 mg/L, well outside of the 3.3-19.4 mg/L acceptable range
• Kappa/Lambda Ratio: 45, well outside of the .26-1.65 acceptable range
• IgA Level: 2111 mg/dL, well outside of the 70-400 mg/dL acceptable range
• IgG level of 698 mg/dL, barely outside of the 700-1660 mg/dL
• M-Spike: 1.29
There are other data points outside the reference ranges, but these are the ones that concern me most. I had been overseas when I received the results and asked my hematologist if I should cut my vacation short to come home for further evaluation/tests. He urged me not to do so and told me it can wait. I managed to enjoy my vacation but now that I returned I can't stop worrying. I'm following up with my hematologist to see what the next step is. I'm scared.
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This all seems like encouraging news to me.
What do you think?
I think so too. But what I shared with you all are just snippets of larger reports that I read, much of which I don't quite understand without the aid of someone's interpretation, I'll feel more optimistic when I see my hemo-onco and he confirms my understanding and fills in the gaps of my understanding. But, yes, encouraging.
I spoke with my doctor today. He said my osteoporosis is likely due to the plasma cell dyscrasia, as it's not likely someone my age (57) would have osteoporosis. He's prescribing something for it.
He confirmed that the PET-CT scan showed no lesions, so it's confirmed that I don't have any one of the CRAB criteria. However, as I think I mentioned in an earlier post, my FLC ratio climbed quite a bit to a little below 90.
My doctor spoke with one of the leading myeloma specialists at a myeloma center of excellence about my case, who said delaying treatment would probably be best as it seems I'm on sort of a borderline, and once I start treatment, that's it - I'll likely need to be treated for the rest of my life. As far as a formal diagnosis, my doctor said, "we're not there yet". I think I'm smoldering inching towards active, but not there yet. I'll be seeing my hema-onco in May.
Always ask where they graduated in their class, Kakc19. Some doctors graduate at the top and some at the bottom. You were very wise to change doctors.
I think your assessment of where you are is right. I’ve heard a FLC above 100 is where they get concerned.
Have you tried curcumin? Many good results found from the somewhat limited studies on stopping or slowing progression.
My FLCs dropped ~25% after starting 3-4 gms/day. I’m probably repeating myself here.
I would try curcumin, however I'm concerned about how I would tolerate it given my comorbidities of esophagitis and urinary tract issues (neither related to MM).
I'm a little confused about the free light chain reading. The absolute number of IgA is above 2200, and the absolute number of free kappa light chains is above 300. Understanding that you're likely not a physician, do you (or anyone else) know if one has a high free light chain reading (with associated high FLC ratio) AND a high heavy chain reading, does it mean a likely case of light chain myeloma? I had been of the understanding that the conditions for light chain myeloma is when NO heavy chains are made and ONLY light chains exist in excess.
“About 15% of patients have light chain myeloma. In this type of myeloma, the myeloma cells secrete only light chain protein and no heavy chains. It is also known as "Bence-Jones myeloma" (after the doctor who discovered it).”
You are correct- the above is copied & pasted from the IMF website.
I’m not a doctor but read about MGUS a lot since my diagnosis.
Since you have an M spike I think that rules out LC myeloma?
Where do you buy bioavailable curcumin?
TIA!
Kathy
Walmart is one, but a number of grocers carry it. We buy Qunol and I take 1000 mg twice a day with meals. I don't have any side effects from it and I'll see with my bloodwork in a few months if it has any effect on kappa levels. You can also search using "bioavailable curcumin" but there are a lot of them out there and no telling if some are overpriced spam. The below link has info on changes that make curcumin better absorbed by the GI tract.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7144558/#:~:text=To%20date%2C%20the%20curcumin%20formulation,to%20unformulated%20curcumin%20%5B15%5D.