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Questions and discussion to help forum members determine if they may have multiple myeloma, smoldering multiple myeloma, or MGUS.

Do I have myeloma?

by MrsM on Mon May 04, 2015 7:54 pm

Hello, Im new to the Forum.

About a month ago, i was sick with a bad cold so I went to my family physician and he ordered a CBC. A few days later, the nurse called and told me that I have severe anemia and I have been referred to my local cancer institute for testing.

So a few days later, I meet the oncologist and he asks me some questions and examines me and sends me to the lab for blood work and writes me a script for iron. So 3 weeks go by and finally I receive a call from the nurse telling me I need to come into the cancer institute to go over my test results. So I went to my appointment on Friday, May 1st, and I sign in and they send me straight to the lab for more blood work.

After that, I go to the examination room and wait for the oncologist. She comes in and informed me my iron is still very low and I will need to get an infusion. She also told me I have kappa free light chains in my serum, but no M-spike, and she wants to do a 24-hour urine test on me to check for Bence-Jones proteins. So I'm currently collecting urine right now so I can turn it in tomorrow.

So apparently they are suspicious that I have myeloma?

I was able to log in and look at my labs, but I do not understand them. Can someone clear this up for me??

Albumin is 46.5 L
Alpha1 4.7
Alpha2 11.3
Beta1 6.6
Beta2 is 7.4 H
Gamma is 23.5.H

I'm so anxious and scared. I'm 37 and I have 2 little kids.

MrsM
Name: Mrs M
Who do you know with myeloma?: I have MGUS
When were you/they diagnosed?: May 2015
Age at diagnosis: 39

Re: Do I have myeloma?

by Multibilly on Mon May 04, 2015 8:08 pm

Dear MrsM,

Welcome to the forum.

If you don't have an M-spike, the chances are "pretty good" that you don't have any sort of mono­clonal gammopathy such as multiple myeloma.

Do you know what your serum free light chain values were? Everyone has some free light chains in their blood – this is normal. But, if the serum free light chain numbers are quite a bit off, then further testing might be suggested.

The free light chain numbers would be reported as a kappa, lambda, and ratio value (please include the units of measure).

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Do I have myeloma?

by MrsM on Mon May 04, 2015 8:57 pm

Serum Immunotyping? Or Serum Protein Electrophoresis? Both were done. That is why I'm confused.

These are my Serum Immunotyping levels:

Albumin is 46.5 L
Alpha1 4.7
Alpha2 11.3
Beta1 6.6
Beta2 is 7.4 H
Gamma is 23.5.H

I don't know what the SPE showed :(

MrsM
Name: Mrs M
Who do you know with myeloma?: I have MGUS
When were you/they diagnosed?: May 2015
Age at diagnosis: 39

Re: Do I have myeloma?

by Multibilly on Mon May 04, 2015 9:17 pm

MrsM,

The numbers you listed are from your serum protein electrophoresis test results. I'm looking for the results of a different test.

If you are looking online at your various test results, there should be a completely separate lab test called a "Serum Freelite Assay", or a" Free Kappa/Lambda" or "Free Light Chain" test or something like that. It will be the only test that has values with the words "kappa" and "lambda" in the test results. This is the test that your nurse used to tell her that you have free light chains in your serum. Those are the values I'm after.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Do I have myeloma?

by MrsM on Mon May 04, 2015 10:38 pm

I found the test. I can see where there is no M-spike in the gamma region, but it's not com­plete­ly flat either. There is a slight "bump"in the gamma region. At the bottom it says "kappa free light chains detected", and that is it. No values listed.

But I'm sure the oncologist knows exactly what the values are. Probably why they are checking for Bence-Jones protein.

MrsM
Name: Mrs M
Who do you know with myeloma?: I have MGUS
When were you/they diagnosed?: May 2015
Age at diagnosis: 39

Re: Do I have myeloma?

by Multibilly on Tue May 05, 2015 6:54 am

Bence-Jones proteins is just another term for free light chains when they are measured in one's urine. Unlike having some free light chains in your blood (within a normal range), having free light chains in one's urine (Bence-Jones proteins) is not normal.

If you want to try and understand more about free light chains before your next appointment, this is a good document to start with.

Best of luck to you with your follow-up tests.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Do I have myeloma?

by MrsM on Tue May 05, 2015 5:14 pm

Thank you.

MrsM
Name: Mrs M
Who do you know with myeloma?: I have MGUS
When were you/they diagnosed?: May 2015
Age at diagnosis: 39

Re: Do I have myeloma?

by MrsM on Sat May 09, 2015 10:24 pm

My results came back from my 24-hour UTP. My results says no monoclonal proteins detected. So I guess this means I'm negative for multiple myeloma?

My kidney function is normal, but I'm spilling a lot of protein and I'm not sure why. Now the question is, why do I have elevated kappa free light chains and high beta and gamma on my SPE, but it's not showing up on my UPE?

I have had problems that have plagued me for months. My bones hurt, sore liver, my fingers and toes hurt, and I'm frequently sore all over for no reason at all and recently discovered my liver is enlarged. I do not have hepatitis and I have hypertension. I was having these symptoms months before i even knew something was possibly wrong. Now my urine test came back negative for Bence Jones proteins. I'm relieved, but am I truly ok? Or am i just undetectable?

Urine Total Protein 24 Hour

UTP 5.0 mg/dL
Total Volume 1950 ml
24Hr UTP 98 High

Creatinine Clearance

U Creat 127.9 mg/dL
CREAT 0.68 5/1/15 mg/dL
AAestGFR 125 mL/min
GFR 125 mL/min
CreatCl 255 High

Urine Protein Electrophoresis

UPE Interp:
Protein electrophoresis pattern appears normal

UTP 5.0 mg/dL
UAlb% 14.4 %
UAlp1% 20.3 %
UAlp2% 12.1 %
UBeta% 12.7 %
UGamma% 40.5

Urine Immunotyping

UIT Interp:
No monoclonal proteins detected

MrsM
Name: Mrs M
Who do you know with myeloma?: I have MGUS
When were you/they diagnosed?: May 2015
Age at diagnosis: 39

Re: Do I have myeloma?

by Dr. Jatin Shah on Mon May 11, 2015 10:48 pm

The blood work and urine work look reassuring. The actual blood levels of the free kappa and lambda light chains would be important.

It's also important to find out why you are so anemic and have low iron levels.

Young females may be iron deficient from monthly menses, and I agree with iron replacement therapy. However, if that does not correct anemia, additional workup may be necessary to understand why you are anemic.

All the best.

Dr. Jatin Shah
Name: Jatin Shah, M.D.
Beacon Medical Advisor


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