[dogmom]

Husband just diagnosed with multiple myeloma

by dogmom on Wed Dec 16, 2015 12:47 pm

My husband has just been diagnosed with multiple myeloma. He is 58, never been sick a day in his life other than colds, usual stuff, and not much of that.

He started the last of October with back and chest discomfort, but put it off to the redo we had just finished on our kitchen. I am a medical lab tech and a stickler for yearly physicals. Ours was due the week after the redo. It showed him mildly anemic with a hemoglobin of 11.5, so doc ordered a EGD and colonoscopy to rule out bleed. All clear. His serum creatinine is elevated at 1.9. ESR at 68. Serum protein 8.4, serum albumin 4.5, 1+ protein in urine. Primary doc sent Bence Jones and immunofixation electrophoresis.

Came back positive for multiple myeloma. Serum IgA 1802, repeat hemoglobin 10.2, urine creatinine 71.9, urine protein 233, urine protein / creatinine ratio 3107.

He is having pain in rib area and small amount in lower back, so we are sure he has bone and kidney involvement, but no symptoms of kidney failure full blown. His serum calcium is normal at 9.3 but upper limits of normal.

I understand multiple myeloma from a clinical aspect, but all that seems to fall by the wayside when it becomes personnel. He has an appointment on January 7th with the director of the multiple myeloma department at Sarah Cannon Cancer Institute and Research Center at Centennial Medical Center in Nashville , TN. Considering the next two weeks are holiday weeks, that was as soon as we could get. I have researched the MD and am very satisfied with his credentials and qualifications.

I went through breast cancer treatment 11 years ago and a breast cancer forum was of great help to me. So here I am.

[Little Monkey]

Re: Husband just diagnosed with multiple myeloma

by Little Monkey on Wed Dec 16, 2015 2:24 pm

Welcome to the forum; unfortunately.

Have they done an MRI on you husband's ribs and back yet, or are they waiting for the multiple myeloma specialist to make that decision on January 7th?

[dogmom]

Re: Husband just diagnosed with multiple myeloma

by dogmom on Wed Dec 16, 2015 2:48 pm

No, no MRI yet. They did do a chest x-ray right after he starting having pain in his chest in October (before myeloma was suspected) and it showed clear. Our primary said the first things the onc would do would probably be bone scans and a bone marrow and this I agree with.

[JimNY]

Re: Husband just diagnosed with multiple myeloma

by JimNY on Wed Dec 16, 2015 7:02 pm

Did your husband have serum protein electrophoresis (SPEP) and serum immunofixation electrophoresis (IFE) tests done?

The IFE would tell you whether your husband has a monoclonal protein in his blood and what type of monoclonal protein it is.

The SPEP will tell you how much monoclonal protein is present in the blood, if one seems to be present. The level of the monoclonal protein in the blood will be labeled "M-spike", "abnormal protein band", "monoclonal protein", "monoclonal protein band," "paraprotein level", etc.

The other blood test that would be useful to have run is a serum free light chain assay.

The oncologist will want the SPEP, IFE, and serum free light chain test results when you meet with him in January, so there is no sense in waiting to have them done, if they haven't been done already. Your local doctor can order the tests now so you don't have to wait until January to have them ordered.

To understand what test results are important for determining whether someone has multiple myeloma, smoldering multiple myeloma, or MGUS, see this article:

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

[dogmom]

Re: Husband just diagnosed with multiple myeloma

by dogmom on Wed Dec 16, 2015 9:05 pm

The M is <4 G is 290 A is 1802 and when our primary called me the results she said it looks like A type. This is on the serum protein immunofixation test.

[JimNY]

Re: Husband just diagnosed with multiple myeloma

by JimNY on Wed Dec 16, 2015 10:51 pm

Do you have your husband's actual lab results in front of you, or are you just going from notes you took from a phone conversation with the doctor?

If you don't have the actual lab results in front of you, then there's not much more that can be said at this point. It sounds like your husband had a serum immunofixation and it determined that he has an IgA monoclonal protein in his blood. That makes sense given his IgA level, which is elevated at 1820 mg/dL, when the normal range is about 60 to 360 mg/dL.

His IgA level suggests that he could have an M-spike as high as about 1.6 g/dL, but it would be good to know what the M-spike is on his SPEP, which he probably had done if he had an immunofixation test done.

It also would be good to know whether he had the free light chain assay done and, if so, what the results were for his kappa and lambda serum free light chain levels and his kappa/lambda ratio.

He really should have the serum (not urine) free light chain assay done if it hasn't been done already.

[dogmom]

Re: Husband just diagnosed with multiple myeloma

by dogmom on Wed Dec 16, 2015 11:08 pm

No he did not have the free light chain test done. I do have copies of his lab results, that is actual numbers not the graph part. Yes it was a SPEP and a Bence Jones protein on urine. That is what our primary used to determine the myeloma diagnosis that prompted her to send him to the hematologist / oncologist.

[dogmom]

Re: Husband just diagnosed with multiple myeloma

by dogmom on Thu Dec 17, 2015 10:15 am

What is the difference between lambda, kappa, IgG, and IgA? Is one of these worse than the other or are they all equally treatable? My husband's IgA is the one that is elevated (1802) and he has not had the free light chain test yet, but has had a Bence Jones protein on urine that is positive.

[JimNY]

Re: Husband just diagnosed with multiple myeloma

by JimNY on Thu Dec 17, 2015 10:43 pm

DM,

The body produces different types of immunoglobulins. Each immunoglobulin molecule consists of two types of molecules: heavy chain molecules, and light chain molecules.

The heavy chain parts of the molecule are labeled IgA, IgG, IgM, etc.

The light chain parts of the molecule are labeled either kappa or lambda.

So there are "IgA kappa" immunoglobulins floating around in the blood, "IgA lambda", "IgG kappa", "IgG lambda", etc.

There also are "free" light chains -- kappa and lambda -- floating around in the blood. These are the light chain parts of the immunoglobulin molecules, but they are not attached to any heavy chains.

Multiple myeloma patients typically overproduce one particular type of immunoglobulin -- for example, IgG lambda. The amount of this excessive "monoclonal" immunoglobulin is what is measured by the "M-spike" and detected by the serum immunofixation test.

When a multiple myeloma patient overproduces one particular immunoglobulin, such as IgG lambda, he or she also usually overproduces the light chain part of that immunoglobulin -- in this case, the lambda light chain.

About 80 percent of multiple myeloma patients have an M-spike and an elevated free light chain level when they are first diagnosed.

Another 15 percent of multiple myeloma patients do not have an M-spike, but have an elevated light chain level at diagnosis.

Most of the rest of newly diagnosed patients are "nonsecretory" at diagnosis. They have multiple myeloma in their bones, and it is doing damage to the body, but the multiple myeloma is not "secreting" any excess amounts of immunoglobulins or free light chains.

Multiple myeloma patients with IgA multiple myeloma apparently are more likely to have myeloma cells with genetic abnormalities that can make the disease more difficult to treat. So the prognosis for these patients can be somewhat worse than for patients with, for example, IgG multiple myeloma. See this forum thread for some discussion on this subject:

https://myelomabeacon.org/forum/is-iga-multiple-myeloma-aggressive-t3855.html

I'm not aware of any studies showing a difference in prognosis between myeloma patients with kappa versus lambda disease.

Hope this helps a bit.

You can learn a lot from previous discussions in the forum, and you can find useful discussions using the FORUM (not site) search box. Just be sure to search for specific keywords, rather than phrases. So search for keywords like "transplant" or "kappa" or "IgA", rather than phrases like "why does my stomach hurt" or "best treatment for newly diagnosed patients".

[Multibilly]

Re: Husband just diagnosed with multiple myeloma

by Multibilly on Thu Dec 17, 2015 10:59 pm

DM,

JimNY provided a great summary, as usual.

But note that there is one potential difference between kappa and lambda free light chain patients that is highlighted by Dr. Landau in the link below. Also note that none of the characteristics listed by JimNY or Dr. Landau are givens for any particular combination of an immunoglobulin and a free light chain (whose combination is referred to as an "isotype"). These listed traits just tend to sometimes occur more often for a given isotype.

https://myelomabeacon.org/forum/kappa-lambda-free-light-chains-t3833.html#p21748