[megadele]

Trying to understand...

by megadele on Sat Aug 31, 2013 9:54 am

Hi,

I posted in here last week with my story, and I am hoping to get some more clarification on something. I am a 33 y/o female. My serum protein electrophoresis came back clean, but my urine protein electrophoresis showed "A SLIGHT RESTRICTION IN THE GAMMA REGION THAT MAY INDICATE THE PRESENCE OF A MONOCLONAL IMMUNOGLOBULIN." A script is in the mail for me to have a urine immunofixation done to get a better picture.

My questions are: (1) Since my serum was normal and the abnormal protein only showed up in the urine test, is there any chance that this could be myeloma? Or does this automatically indicate levels so low that I can rule out myeloma and assume only MGUS or SMM? (2) Should I automatically assume at this point that I at least have MGUS? Or could the "[possible] presence of a monoclonal immunoglobulin" be caused by something else entirely? And how strong is the "may indicate" verbiage in the test results? Do they know from my UPEP that I definitely have an abnormal protein and they're just using soft language to avoid unnecessary alarm until further testing? Or do they truly not know if I have an abnormal protein until the immunofixation test? I'm very unclear from this report exactly what they found. (3) Is the "M-spike" that I read about in various articles, etc., about myeloma identified during the immunofixation test; or is that identified in some other test?

I know I'll have answers within the next few weeks after I get the immunofixation completed and results back. But I'm just trying to brace myself and prepare for all the possibilities. I am already a cancer survivor (diagnosed breast cancer less than a year ago; presumed cancer-free now). If there is another cancer on my horizon, I want to start mentally preparing for that possibility. Thanks so much for any insights/help in understanding these results.

[NStewart]

Re: Trying to understand...

by NStewart on Sat Aug 31, 2013 11:54 am

The UPEP, or urine immunofixation, will show whether there is a monoclonal protein and what level it is in your urine. Both the SPEP, serum immunofixation, and the UPEP are used as part of the diagnosis for Myeloma. It depends on where the elevated protein is showing up - blood or urine. In addition to one of these tests, your doctor should be ordering a CBC, chemistry panel, a total protein blood test, bone marrow biopsy and at least a skeletal survey to confirm the multiple myeloma diagnosis. I would not panic yet. Take a deep breath and wait for the results of the urine immunofixation. You might even contact the International Myeloma Foundation to get more information. They have people you can talk with by phone and lots of brochures to help explain the disease, tests, etc.

Here's hoping that you don't have multiple myeloma since you've already dealt with one cancer diagnosis in the last year.

Nancy in Phila

[megadele]

Re: Trying to understand...

by megadele on Sat Aug 31, 2013 2:55 pm

Nancy, thank you for your response and for mentioning the IMF. I've visited their website and have found some helpful information there to answer my questions. It seems that there are many parts/steps to diagnosing multiple myeloma, which is why I guess I've been so confused; not just a simple one-test diagnosis. My husband keeps reminding me to just wait till I get the next test, to not make any assumptions, but waiting certainly is not my strong suit! I was encouraged to read on the IMF website that there are sometimes other causes behind an M-spike, including "inflammation, autoimmune, and/or allergic reactions and even other types of cancer." I'm wondering if my breast cancer is somehow related? Again, I just need to wait and see...

[megadele]

Re: Trying to understand...

by megadele on Thu Sep 05, 2013 7:04 pm

So, I heard back today on my urine immunofixation, and there were no abnormal proteins or heavy or light chains found. (Yay!) My question is, should I still be concerned given the abnormal urine electrophoresis, or does this mean I'm in the clear? Just wondering if there is any follow-up that I should be anticipating or requesting. Thank you.

[Dr. Ken Shain]

Re: Trying to understand...

by Dr. Ken Shain on Sat Sep 07, 2013 2:00 pm

It sounds as though you may not have a monoclonal paraprotein-negative SPEP and IFE, and now Negative UPEP and IFE (SFLC?). Again, complete the work-up outlined by your oncologist. CBC (looking for anemia), CMP (looking for renal insufficiency, hypercalemia, albumin), beta -2 microglobulin, and imaging studies (looking for lytic dsease).

A bone marrow biopsy is a consideration; however, without more data suggestive of a malignancy it is probably unnecessary at this point. Hopefully, it was a reactive process and not a plasma cell disorder.

Best of luck.