[sandra256]

26 years old, may have multiple myeloma

by sandra256 on Wed Apr 01, 2015 2:54 pm

Hi everyone

I am 26 years old and very frightened.

My story starts with going for a physical and finding protein in my urine. I got referred to a urologist. Everything looked fine. Then got referred to a nephrologist due to the protein in urine.

Long story short, got a kidney biopsy and it shows that I have MesPGN (mesangial proliferative glomerulonephritis). More blood work was recommended.

What caught my nephrologist's attention was that the kappa and lambda came back positive on my kidney biopsy. She then sent me to get some more lab work. Both kappa and lambda's are high, but my ratio is normal. She believes that I could have multiple myeloma. She has referred me to a hematologist, which I am waiting on the appointment.

I am very frightened from everything I have read online. I have two beautiful children of age 4 and 7. Thinking about not being able to watch them grow is very depressing and sad

Looking for some more information and hope.

[Toni]

Re: 26 years old, may have multiple myeloma

by Toni on Wed Apr 01, 2015 3:11 pm

I am not a doctor nor am I well informed on myeloma, but my understanding is that elevated kappa and lambda free light chains with a normal ratio is not indicative of myeloma. This is what I've learned:

Elevated concentrations of both kappa and lambda with normal kappa/lambda ratio may be due to:

1. Renal impairment (common);
2. Over-production of polyclonal FLC from inflammatory conditions (common);
3. Biclonal gammopathies of different FLC types (rare).

[sandra256]

Re: 26 years old, may have multiple myeloma

by sandra256 on Wed Apr 01, 2015 3:53 pm

These are my test results for the free light chains

Kappa free - 34.04 mg/l (normal range is 3.3-19.4 mg/l)
Lambda free - 84.83 mg/l (normal range is 5.7-26.3 mg/l)
Kappa/lambda ratio - 0.40 (normal range is 0.26-1.65)

I do have renal impairment, currently at CKD stage 3.

My nephrologist was worried by these numbers. She said these numbers are not good according to my age.

[antelope1225]

Re: 26 years old, may have multiple myeloma

by antelope1225 on Wed Apr 01, 2015 5:07 pm

Hi Sandra,

I am sorry to hear of your diagnosis with MesPGN.

I agree with Toni that you shouldn't assume you have multiple myeloma.

Here is a link to an article about MesPGN and I also included a little write up from the article. The thing I wanted you to notice is the last sentence (3-year renal survival was 93%)

R Waikhom et al, "Non-IgA mesangioproliferative glomerulonephritis: a benign entity?", Nephrology, Dialysis, Transplantation, Nov 2011 (link to full text of article)

"In a retrospective study from Norway with a median follow-up of 34.8 months, it was reported that the progression to ESRD was similar for both IgA and non-IgA mesangioproliferative glomerulonephritis. The 3-year renal survival was 93%."

I hope they find the cause for your injured kidneys and that it can be treated easily.

Cathy

[Toni]

Re: 26 years old, may have multiple myeloma

by Toni on Wed Apr 01, 2015 5:22 pm

Please remember I am a "layperson" just like you, so you must discuss your concerns with your physicians.

When is your appointment with the hematologist?

Do you have test results for the following:

• Creatinine
• Calcium
• Hemoglobin

Do you know if you've had any tests to check for monoclonal gammopathy - immunofixation electrophoresis?

[Toni]

Re: 26 years old, may have multiple myeloma

by Toni on Wed Apr 01, 2015 5:23 pm

Oh, it looks like Cathy provided you with some good information

[sandra256]

Re: 26 years old, may have multiple myeloma

by sandra256 on Wed Apr 01, 2015 6:44 pm

Cathy and Toni,

Thank you for the response. The reason I am assuming that it could be multiple myeloma is because my nephrologist mentioned the possibility of it being that because of the free light chains. I am waiting on the call from the hematologist for an appointment.

My creatinine is currently at 1.5 and my GFR is at 50. These tests and the free light chains as well as the lupus panel have been tested.

[sandra256]

Re: 26 years old, may have multiple myeloma

by sandra256 on Wed Apr 08, 2015 2:03 pm

Good day everyone

As I mentioned above, I'm 26 yrs old diagnosed with MesPGN from a kidney biopsy, biopsy suggested additional blood work. My current creatinine level is at 1.5 and my GFR is at 50. This is what came back from the additional blood work I had done. Please feel free to help me interpret these results.

The SPEP came back normal I think

  Normal Values
TP (PEP) 7.7 6.3-8.2 gm/dL
Albumin 56.80%
Alpha-1-Glob 3.75%
Alpha-2-Glob 9.62%
Beta Glob 14.40%
Gamma Glob 15.42%
Albumin (PEP) 4.37 2.75 - 4.80 g/dL
Alpha-1-Glob 0.29 0.11 - 0.45 g/dL
Alpha-2-Glob 0.74 0.50 - 1.04 g/dL
Beta Globulins 1.11 0.60 - 1.21 g/dL
Gamma Globulins 1.19 0.65 - 1.80 g/dL

However the UPEP came back different

Ur Total Pro 27.10 0.0 - 12.0 mg/dL
Ur Total Pro 27 1 - 12 mg/dL
Albumin, Ur 55.31%
Alpha-1 9.43%
Alpha - 2 6.79%
Ur Beta 19.00%
Ur Gamma Glo 9.48%
Urine Albumin 14.93 mg/dL
Ur Alpha1 2.55 mg/dL
Alpha - 2 1.83 mg/dL
Ur Beta 5.13 mg/dL
Ur Gamma Globu 2.56 mg/dL
Creat, Random Urine 71.00

Ur Pro/Cre 381.6 0.0 - 30.0 mg/dL

Does this mean I might have multiple myeloma, light chain myeloma?

Moderator's Note:

This posting originally was in a thread of its own, and was left the way for a while so that some of the initial responses below were made when the discussion was a separate thread. We realized, however, that it might be best to put the postings back into Sandra's original thread, which we've now done. Our apologies for not having done it earlier.

[Multibilly]

Re: 26 years old, may have multiple myeloma

by Multibilly on Wed Apr 08, 2015 3:27 pm

Hi Sandra,

Did they run a serum immuofixation (IFE) test? If so, what were those results?

On your SPEP results, is there a separate notation that you can find on the report that states a value for your M-spike (it might instead be called "monoclonal protein", "M-Protein", "paraprotein", etc). It may also be listed as an entry called "Abnormal Protein Band 1", etc.

For the benefit of others reading this post, note that Sandra's earlier serum light chain tests came back with:

Kappa free - 34.04 mg/l (normal range is 3.3-19.4 mg/l)
Lambda free - 84.83 mg/l (normal range is 5.7-26.3 mg/l)
Kappa/lambda ratio - 0.40 (normal range is 0.26-1.65)

[sandra256]

Re: 26 years old, may have multiple myeloma

by sandra256 on Wed Apr 08, 2015 3:52 pm

Multibily

Thank you for your response. No, there is no separate notation stating anything with the M-spike. And I have looked again on my lab report to make sure, and there is not a serum immuofixation test (IFE) that was run.

However, there is another value that i missed under the SPEP. Its the A/G Ratio (PEP). Could that be the M-spike you're referring to?

And thank you for adding the serum free light chains test results as well.