[North-East]

Newly diagnosed with smoldering myeloma

by North-East on Sun Feb 15, 2015 12:16 am

Hi, I'm Lu,

My daughter (30 years old) was diagnosed with MGUS about a year ago. She was sent to a hematologist after protein was found in her blood when she donated blood to the Red Cross. Her hematologist told her there could be a familial tendency for multiple myeloma, so she asked me to get tested. I agreed, thinking my tests would be negative, believing it would make her feel better. To my surprise I had some pretty high numbers. Yikes!

Kappa free light chain level is 1293.7 mg/L.
Kappa / lambda free light chain ratio is 219.27
M-spike 72.89%

No CRAB symptoms. My bone marrow biopsy is pending (my biopsy was Wednesday).

I have some confusing lab results. My serum

IgA 21 mg/dl (Normal range 81-463)
IgG 294 mg/dl (Normal range 694-1618)
IgM <13 mg/dl (Normal range 48-271)
WBC 3.5.

Has anyone seen all their immunoglobulins low like this?

Interesting thing to me is that I rarely get sick. I do have symptoms of

• Fatigue - Put this off as a part of aging
• Peripheral neuropathy in my feet and ankles - No I'm not diabetic; saw a foot doctor and he said it was caused by back issues
• Frequent headaches with occasional dizziness - Thought this was sinus problems
• Joint pain - Figured this was arthritis.

So there you have it, my story up to this point. I'm in the shock and fear stage, but doing my best to stay optimistic.

Thank you for this opportunity to share and learn.

[Ian]

Re: Newly diagnosed with smoldering myeloma

by Ian on Sun Feb 15, 2015 8:11 am

Hello Lu, and welcome to the forum.

I'm sorry to hear about your diagnosis. It's good, however, that you are getting all the different tests done to help understand exactly what your diagnosis is and what your next steps going forward should be.

Your kappa free light chain level certainly seems high. Just to confirm, was this result from a blood test of your free light chains?

Also, did you have a serum immunofixation (IFE) test done and, if so, what was its result?

And one last question - You mentioned your M-spike in percentage terms. Do you have the result as an actual level, in either g/dL, mg/dL, or g/L?

Without answers to some of the questions I just asked, it is difficult to know why your immuno­globulin levels are as low as they are. It may be that you have a rare type of myeloma (IgD or IgE), or it could be that you have what is known as non-secretory myeloma. It's also possible that myeloma could be the incorrect diagnosis in your case (I say this because, not being a doctor, I don't know enough to know if some other disease or condition, such as an infection, might cause the test results you've seen).

Given your high kappa free light chain level and kappa/lambda ratio, you should be aware of a recent change in the diagnostic criteria for myeloma. The change is described in this article:

SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014.

Please note, however, that the light chain-related criteria discussed in the article are for results of the serum (blood) free light chain test.

Another member of the forum (Multibilly, who is a great resource) recently posted a nice summary of the different kinds of tests that are run to help diagnose and monitor myeloma patients. You may find it helpful.

There are also imaging tests done to determine to what extent someone may have bone lesions or areas of the bone marrow that have been affected by myeloma. Previously, the standard imaging testing was a x-ray skeletal survey, but MRI and PET/CT is being used increasingly as alternatives to the skeletal survey. Dr. Prashant Kapoor, who posts sometimes here in the forum, has this nice overview of the different methods and what they can be used for:

P Kapoor, "To PET or Not to PET," Beacon forum posting, Jul 24, 2014.

Finally, if you have not already been seen by a physician who specialises in multiple myeloma, I would highly recommend that you make an appointment with one. Myeloma is a very rare disease that is also very individualised, so it is very beneficial to be under the care of a myeloma specialist, rather than a standard oncologist or general haematologist-oncologist.

If you let us know generally where you are located (country and region), there will be people here in the forum who can give you advice as to where the nearest myeloma specialist might be. This link will take you to a list of U.S. myeloma treatment centers.

Let us know if you have any further questions. There are many people here in the forum who can be of help.

Good luck!

[Multibilly]

Re: Newly diagnosed with smoldering myeloma

by Multibilly on Sun Feb 15, 2015 9:07 am

Hi Lu,

Ian provided a really good and complete set of suggestions and questions. I am writing simply to reinforce his advice to seek out a multiple myeloma specialist.

Best of luck with all this.

[North-East]

Re: Newly diagnosed with smoldering myeloma

by North-East on Sun Feb 15, 2015 11:24 pm

Thank you, Ian and Multibilly, for responding to my post,

My kappa free light chain and kappa / lambda ratio are both serum results. My M-spikes are only presented as a percentage on my lab print outs and I have no idea how to convert them to an understandable reading. There were no ranges posted with this.

I did have a bone survey done, which was negative. I'm not sure why these are even done because I believe they would show only larger lesions.

I am seeing a hematology / oncologist, but I don't believe he is a myeloma expert. He was helpful in answering some questions I had, but he didn't Know why my IgA, IgG and IgM readings were so low.

What is an IFE test? I don't see anything like that on my lab results. My monoclonal spike in beta of 72.89 was on 24 hour urine.

I live about 45 minutes from Buffalo NY.

I have been reading everything I can google, which can sometimes be difficult to decipher. I have found this site very helpful. It's wonderful to hear from others who are going through the same struggles.

I want to be the best advocate I can for myself and others on this journey.

I look forward to learning more, Lu

[Multibilly]

Re: Newly diagnosed with smoldering myeloma

by Multibilly on Mon Feb 16, 2015 8:40 am

Hi Lu,

If you go back to your Serum Protein Electrophoresis (SPEP) test and tell us what your total protein level is and exactly how your M-spike percentage was listed, we can likely tell you what your absolute M-spike level is. Usually, one just takes the M-spike percentage and multiplies it by the total protein number on the SPEP to get the absolute M-spike value.

Were there any notes on the SPEP test (the notes may be anywhere on the report)? If so, what exactly did those notes say? What were the other protein values that were listed on the SPEP? Are you sure your SPEP reports the M-spike as 72.89% and was that number actually listed as an "M-spike"?

The IFE is simply the serum "immunofixation test". Look for a lab that has the word "immunofixation" in the report title. It should include some notes about the kind of monoclonal protein that was found. What did those notes say?

[Cheryl G]

Re: Newly diagnosed with smoldering myeloma

by Cheryl G on Mon Feb 16, 2015 12:10 pm

Hi Lu,

Just to round out what Multibilly wrote, if you're 45 minutes from Buffalo, then Roswell Park Cancer Institute is probably the closest major myeloma treatment and research center to you. Dr. Philip McCarthy, who is well known as a myeloma researcher, is there.

Other options, depending exactly where you are, might include the Cleveland Clinic or the Wilmot Cancer Institute in Rochester. The Cleveland Clinic has several myeloma specialists, including Dr. Jason Valent, who posts here in the forum often.

[North-East]

Re: Newly diagnosed with smoldering myeloma

by North-East on Mon Feb 16, 2015 5:51 pm

Hi, Multibilly,

My serum protein electrophoresis showed a total protein of 6.4 g/dL, range is 6.2-8.3, so it is normal. The M-spike I reported, 72.89%, is from my urine 24-hour PEP and immunofixation. The total protein in the 24-hour test was high at 171, with a range of 0-149. I also had a protein/creatinine ratio of 112, with range of <85.

Notes say: "Immunofixation electrophoresis of the urine protein demonstrated a band of kappa light chain, which was not associated with heavy chain type IgG, IgA, or IgM. Monoclonal free kappa light chain in the presence of the nephrotic syndrome may suggest systemic amyloid oasis or light-chain deposition disease. Clinical correlation and follow-up is suggested."

Gosh, I didn't even see that note before. I wonder what tests I need to further investigate the possibility of systemic amyloid oasis or light-chain deposition disease?

I haven't had a serum IFE test done.

Under my serum kappa/lambda free light chain with ratio test the notes say:

"Ratios outside the normal range are attributed to the presence of monoclonal free light chains. Monoclonal free light chains are found in serum of patients with multiple myeloma, Walden­strom's macroglobulinemia, mu-heavy chain disease, primary amyloidosis, light chain deposition disease, MGUS, and lymphoproliferative disorders. Measurement of free light chain concentrations in serum is useful for diagnosis, prognosis, monitoring disease activity and following response to therapy.

Once again thank you so much for your helpful remarks and for taking the time to help me.

[Multibilly]

Re: Newly diagnosed with smoldering myeloma

by Multibilly on Mon Feb 16, 2015 6:45 pm

Sorry, I'm useless in interpreting urine test results since I have no personal experience with those tests. But the M-spike people normally refer to with multiple myeloma is not derived from the urine tests.

Rather than trying to sort out what's going on from only these tests, you would be best served seeing a multiple myeloma specialist. Given the results you do have, Cheryl's idea of going to Roswell Park is a great suggestion. Dr. McCarthy is indeed one of the greats in multiple myeloma research. Roswell Park would be able to fill in any gaps on your testing and quickly make a diagnosis.

Hope this helps.

[jhorner]

Re: Newly diagnosed with smoldering myeloma

by jhorner on Wed Feb 18, 2015 2:03 pm

Hello Lu,

I have smoldering multiple myeloma and my Immunoglobulins were all low. I had all the same symptoms you have but unlike you I was sick all the time with bacterial infections. I have a biclonal gammopathy, both lambda and kappa on the IgG, so I wasn't making any "normal" IgG. Even though your IgG is low, it is likely mostly normal keeping you from getting recurring infections.

Low immunoglobulins is called "immunoparesis" in myeloma circles and it is actually quite common to have suppressed "uninvolved" immunoglobulins but having low involved immunoglobulins is more unusual though not unheard of. You indicated that you have Kappa light chains but there was no reference to the associated immunoglobulin and your urine indicates "light chains" only, therefore having all low immunoglobulins may be plausible?

As advised by everybody else in this forum, you should f/u with a specialist but I just wanted to let you know that low immunoglobulins is a common presentation in myeloma.

J

[K_Shash]

Re: Newly diagnosed with smoldering myeloma

by K_Shash on Wed Feb 18, 2015 2:53 pm

Hi Lu,

Yes, mine was a similar case as yours, as far as the low serum IgG, IgA and IgM. All those were leaking into the Urine in my case:

In early December 2014 my Lab Test showed:


UPEP:
Test Result Normal Range

IgA 38 mg/dL 40-375
IgG 495 mg/dL 600-1600
IgM 12 mg/dL 30-190

And the 24-hour Urine collection showed:

U Protein random: 201.8 mg/dL
U Creat random 100.0 mg/dL
Urine Protein (24h) 2650 mg/TV 0-150
Tot Vol U Cre 1313
U Albumin 3.8%
U A-1 Globulin 2.3%
U A-2 Globulin 3.7%
U Beta Globulin 5.0%
U Gam Globulin 85.2%

U PEP Interpretation:

Spike in Gamma Region and homogeneous Band in Beta region.

end of test report

My kappa light chains, free were over 1,000 at about this time, my skeletal X-rays showed numerous but recent lesions (no rings, hence no restrictions on physical activities) and my bone marrow biopsy (BMB) showed 30% plasma cells. My induction chemo was started on December 17 and I have been posting my experience on my topic: About to start my treatment...

What I learned was that mine is a case of IgG - kappa myeloma. It seems that the small 'IgG with the kappa LCF' molecules can leak into the urine and a separate blood test can detect the kappa and lambda LCF's in the blood.

I came across your initial post and have not studied all the replies and the references cited therein. However, your post reminded me of my test results and thought I would share them with you right away.

K_Shash