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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I think of my relationship with my doctor as a partnership where I ask any questions that arise re: my care. I definitely respect their knowledge and experience - I will never know as much as they do!
But I want to be included in the decision making process and understand why they order tests and/or treatment, what they suspect or are looking for.
I think you have a reasonable question and it’s okay to ask those. It’s not disrespectful and a confident provider welcomes engagement and questions, in my opinion, vs a passive patient.
I had 24 hour urine and bone marrow biopsy while being diagnosed. Right before bone marrow biopsy, the MD said she didn’t think it was necessary. I said the more information the better. She did perform BMB that day.
I did switch oncologists after that and he ordered a CAT scan as well.
I am a nurse and I strongly encourage you to advocate for yourself. You are not overstepping since it is your health.
Best of luck❤️
Thanks, @kakc19. I did speak with my hematologist. He said radiology will not approve the request for scans without the results of the bone marrow biopsy, i.e., a reason for the scans. I was surprised to hear this. I thought a doctor's order was "law" to be followed no matter what. I guess I don't know how things work.
I have elevated light chains and so far it is because I have a primary Immune Deficiency called CVID (common variable immunodeficiency disease). I was sick as a child but I was not diagnosed until my early 20’s when a friend was in medical school and she saw my bloodwork. I got a new primary care Dr who also specialized in Infectious Disease. He figured everything out my first visit after the bloodwork came in. I have low IgG and IgA but elevated IgM because my immune system is attacking my liver and has been for 10 + years. I also have CKD from it. I was in a coma in 2017 for a month and I was sent home on Hospice and they kept going around my house and they were stealing from me. I was 90 lbs and in a wheelchair and had to have 24 nursing for over a year.
If you see a good Hematologist/Oncologist they should be able to do further testing and try to get answers now before the bone marrow biopsy. I get bone marrow biopsy’s, PET scans regularly.
I would imagine that they at least order a PET scan!!! I would ask why the Dr isn’t doing at least that pre BMB.
@kappaking that’s odd about the scans. The BMB provides what many hematologist/oncologists consider a definitive diagnosis, but scans to identify bone lesions and other considerations are also telling. I read this and other studies, then had a discussion with my doc before deciding if a bone marrow biopsy was right for me.
https://www.nature.com/articles/s41408-020-0319-0
I had a bone marrow biopsy 8 years ago, soon after diagnosis of MGUS through 24 hr urine and bloodwork. Its purpose was to have a baseline to compare to if I have another one some day (kappa/lambda still ramping up but not there yet). I am 69 so had osteo bone density scans, and later scans that haven't shown calcium desorption or lesions. I have kappa light chain MGUS, celiac, collagenous colitis, long covid, and pretty much everything but hoof and mouth disease.
I saw my hematologist yesterday to discuss the results of my BMB&A, which showed approximately 15%-20% neoplastic plasma cells. My doctor said, while not yet issuing a formal diagnosis, he thinks my case is somewhere between MGUS and SMM, and that judging by the trend of the labs, treatment in my future seems likely. He provided me with the name of a top myeloma specialist at a major myeloma center located in my general area and when the time comes, will be referring me to him. I believe I'll be in great care.
But before I reach that point, I'm scheduled for a bone density test and a full-body PET scan this Friday.
Well, shoot! The good thing is you got this thorough work up & have found an experienced team.
You are ahead of many people who don’t have this opportunity. I’m hoping you get a good report on the imaging on Friday. And that you stay healthy for a long time!
Sounds like your hematologist is professional and thorough ordering essential tests and referring you to a Myeloma specialist. Best to you going forward, hopefully you don't any further.
Recently, I've had the following tests:
- Bone marrow biopsy: showed cellular makeup of 15-20% plasma cells
- Cytogenetic analysis: waiting on the results
- FISH: waiting on the results
- Bone density imaging: showed osteoporosis in the lumbar region of spine; otherwise unremarkable
- PET-CT scan: no evidence of additional suspicious lytic or blastic lesion; no abnormal hypermetabolic activity to suggest malignancy at this time