Hi all,
I'm sorry to be here, but I'm comforted at the same time by everyone's experience.
I have been diagnosed with small fiber neuropathy, confirmed by biopsy. Was negative for Congo red. SO, after much blood work, I have been referred by my neurologist to a hematologist / oncologist.
All I know so far is that my kappa light chain is elevated 2.54, the cut off is 1.94. I don't know my lambda, but the nurse said my ratio was elevated as well. Because I'm 36, this is concerning, she said.
My appointment is tomorrow and I will have a full body scan and CBC before my appointment.
I was in the hospital about 3 weeks ago and my blood counts were fine. Slight elevation in my white blood count, but I had been on prednisone for 3 days.
The nurse at the cancer center said I had good kidney function, calcium levels are good, and my urine was good. I do have a history of chronic back pain – 2 herniated discs and degenerative disc disease in my lumbar spine. So obviously I'm on pins and needles today.
Thanks for taking the time to read my post!
Forums
7 posts
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countrygirl - Name: Countrygirl
- Who do you know with myeloma?: IgG MGUS
- When were you/they diagnosed?: September 2016
- Age at diagnosis: 35
Re: No diagnosis but elevated kappa FLC & kappa-lambda ratio
I should also mention that when I asked about my SPEP, she said well you don't really have one, and there is no M-spike.
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countrygirl - Name: Countrygirl
- Who do you know with myeloma?: IgG MGUS
- When were you/they diagnosed?: September 2016
- Age at diagnosis: 35
Re: No diagnosis but elevated kappa FLC & kappa-lambda ratio
Hi everyone,
I saw my hematologist / oncologist yesterday and had my bone scan before the appointment, so unfortunately couldn't find out if they found anything :/ I'm being told that, for now, I will be classified as having IgG kappa MGUS.
As I wrote above, my kappa light chains are slightly elevated at 2.54. I cant remember my lambda, but my ratio is 3.3.
My M-spike was too small to even quantify.
All my other blood work was good and everything is in the right range.
Pending anything concerning on my scan, she doesn't want to see me for a year.
Just wondering how all this sounds to everyone. What are the chances that everything else looks as it does, but I'm full of lytic lesions?
Sorry, I'm just freaking out!
I saw my hematologist / oncologist yesterday and had my bone scan before the appointment, so unfortunately couldn't find out if they found anything :/ I'm being told that, for now, I will be classified as having IgG kappa MGUS.
As I wrote above, my kappa light chains are slightly elevated at 2.54. I cant remember my lambda, but my ratio is 3.3.
My M-spike was too small to even quantify.
All my other blood work was good and everything is in the right range.
Pending anything concerning on my scan, she doesn't want to see me for a year.
Just wondering how all this sounds to everyone. What are the chances that everything else looks as it does, but I'm full of lytic lesions?
Sorry, I'm just freaking out!
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countrygirl - Name: Countrygirl
- Who do you know with myeloma?: IgG MGUS
- When were you/they diagnosed?: September 2016
- Age at diagnosis: 35
Re: No diagnosis but elevated kappa FLC & kappa-lambda ratio
Hi Countrygirl,
I'm not a doc, but the chances of you having lytic lesions or other myeloma-related fallout is very small given your light chain values and lack of hypercalcemia, lack of anemia, and good renal function.
Since they weren't able to quantify your M-spike, but they diagnosed you with IgG kappa MGUS, you must have had a serum immunofixation test that picked up some monoclonal protein of the IgG kappa variety.
For peace of mind, I might ask to be re-tested in 6 months instead of one year. If your numbers are the same (or turn out completely normal) after 6 months, a one-year test cycle would then seem about right.
Let us know how your scan results turn out and good luck.
I'm not a doc, but the chances of you having lytic lesions or other myeloma-related fallout is very small given your light chain values and lack of hypercalcemia, lack of anemia, and good renal function.
Since they weren't able to quantify your M-spike, but they diagnosed you with IgG kappa MGUS, you must have had a serum immunofixation test that picked up some monoclonal protein of the IgG kappa variety.
For peace of mind, I might ask to be re-tested in 6 months instead of one year. If your numbers are the same (or turn out completely normal) after 6 months, a one-year test cycle would then seem about right.
Let us know how your scan results turn out and good luck.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: No diagnosis but elevated kappa FLC & kappa-lambda ratio
Thank you so much for your input. My scan turned up nothing (yaaaaa), but now my neurologist has me panicking about amyloidosis, I have a message sent to my oncologist as she didn't feel the fat pad biopsy was necessary, and I just want to know her reasons for this. I have also asked for a 6 month recheck as well. I'm so thankful for your input!
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countrygirl - Name: Countrygirl
- Who do you know with myeloma?: IgG MGUS
- When were you/they diagnosed?: September 2016
- Age at diagnosis: 35
Re: No diagnosis but elevated kappa FLC & kappa-lambda ratio
Got new blood work back. Breathing again for 4 months!
IgG - 1070 mg/dl (751-1560)
Serum Protein Electrophoresis
Total Protein 8.4 High g/dl 6.3-8.2
Albumin % 61.1 % 55.8-66.1
Alpha 1 3.9 % 2.9-4.9
Alpha 2 9.0 % 7.1-11.8
Beta 12.1 % 8.4-13.1
Gamma 13.9 % 11.1-18.8
Monoclonal protein present, too small to quantitate. Abnormal band, previously identified.
Previously reported as: Monoclonal IgG kappa immunoglobulin identified on Sep 2, 2016.
Serum Free Light Chains
Kappa Free Lt Chain 2.62 High mg/dl 0.33-1.94
Lambda Free Lt Chain 0.85 mg/dl 0.57-2.63
Kappa/Lambda Ratio 3.08 High 0.26-1.65
IgG - 1070 mg/dl (751-1560)
Serum Protein Electrophoresis
Total Protein 8.4 High g/dl 6.3-8.2
Albumin % 61.1 % 55.8-66.1
Alpha 1 3.9 % 2.9-4.9
Alpha 2 9.0 % 7.1-11.8
Beta 12.1 % 8.4-13.1
Gamma 13.9 % 11.1-18.8
Monoclonal protein present, too small to quantitate. Abnormal band, previously identified.
Previously reported as: Monoclonal IgG kappa immunoglobulin identified on Sep 2, 2016.
Serum Free Light Chains
Kappa Free Lt Chain 2.62 High mg/dl 0.33-1.94
Lambda Free Lt Chain 0.85 mg/dl 0.57-2.63
Kappa/Lambda Ratio 3.08 High 0.26-1.65
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countrygirl - Name: Countrygirl
- Who do you know with myeloma?: IgG MGUS
- When were you/they diagnosed?: September 2016
- Age at diagnosis: 35
Re: No diagnosis but elevated kappa FLC & kappa-lambda ratio
That seems like great news and is promising. Keep your head up. You will almost surely have a lot of time where you can make it to the next bridges of treatment options. Like my doctor told me yesterday, the toolbox is already filled with options and keeps getting fuller.
Much Love
Much Love
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PositiveChris - Name: Chris
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 11/28/2016
- Age at diagnosis: 42
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