[NancyjsBrown]

Have monoclonal gammopathy, maybe multiple myeloma

by NancyjsBrown on Tue Nov 10, 2015 3:53 pm

Hi all,

I don't even know where to begin. I went to a neurologist because of peripheral neuropathy. I seriously thought the doc would tell me I had disk issues in my neck or something. I had lumbar fusion in 2012. Blood work came back and next thing I know, she's is sending me to a hematologist because of "abnormal protein with M spike" in my blood. Was able to get an appointment that day.

The hematologist asked me if I knew why I was there, to which I answered "no". She began explaining about all these proteins and immunoglobulins and what have you. I admit, my eyes glazed over. So then she mentions the multiple myeloma thing and how I need further testing, etc.

I did ask her if I did indeed have the monoclonal gammopathy thing and she said yes, but they need to make sure I don't have multiple myeloma. She did say that although my proteins were abnormal, they weren't really high. So I leave there more than a bit scared.

More blood work done ~~ check
24 hour urine test done ~~ check
Full bone scan done ~~ check

Got a call from the nurse this morning. Now they want to do a skeletal survey because apparently the bone scan only showed disk degeneration (no surprise). At some point in the conversation the nurse mentioned the word "myeloma". So, now I'm really terrified. This next test is scheduled for November 12th. I suppose the doc will call me after she has all the results.

Is this skeletal survey a normal part of diagnosing?

I know you all are awesome and have all your numbers from lab work. This is still so new to me I don't even have my lab work.

I guess what I'm looking for is a bit of reassurance. In December 2013, I had an ascending aortic dissection. Only 10-20% of folks survive ~~ I'm very blessed and thankful to be alive, but it took a toll on me and my daughters. I'm 58, divorced, and have barely mentioned this to my grown daughters. Have only told 2 friends, because really, there isn't much to tell at this point, right?

Oh gosh, now I'm rambling. Sorry.

Thanks everyone

[Multibilly]

Re: Have monoclonal gammopathy, maybe multiple myeloma

by Multibilly on Tue Nov 10, 2015 5:19 pm

Hi Nancy,

Welcome to the forum. Try and take a deep breath and relax a bit. I realize that this is a very overwhelming time and most of us on this forum remember this very anxious time when we were first getting diagnosed. I also completely remember that feeling of being "glazed over" at my first hematologist visit when I was first being diagnosed. But things will quickly improve as you better understand just where things are with your diagnosis.

When you say "scan", what kind of a scan did you have? Was it actually a "bone scan" (bone scintigraphy) or was it a PET/CT or CT scan? In general, bone scans are not recommended for diagnosing multiple myeloma.

A skeletal survey (a series of xrays of your entire body) used to be the imaging standard for use with the initial diagnosis of monoclonal gammopathies. However, the current recom­mendations for a newly diagnosed patient with a monoclonal gammopathy calls for a whole body MRI or PET/CT, not a skeletal survey. See the new diagnostic criteria here:

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

This is not to say that a skeletal survey is useless (far from it), but I would be personally pushing for a PET/CT or whole body MRI since they will be much better in picking up any issues that could be associated with a monoclonal gammopathy.

Do you know what your M-spike value was that first sent you to the hematologist? I realize you said you don't have copies of your lab reports, but all you have to do is simply call the doctor's office(s) that did them and they can provide you with copies (or they might also be online and ready for you to view, depending on what kind of reporting setup your doctors have). Once you know which lab reports you have access to, folks on this forum can guide you as to which are the key items to look for.

Without knowing any of your lab values, it's hard to say what you may be dealing with. How­ever, all folks with multiple myeloma start off with a condition known as MGUS. This stage is almost always benign and the chance of it developing into multiple myeloma is only about 1% per year. So that could be what you are dealing with. But again, it's impossible to say without knowing any of your lab figures.

Most importantly, folks on this forum would strongly recommend seeking out a top myeloma specialist instead of a hematologist who might only occasionally deal with multiple myeloma. If you let us know what city you are in, folks on this forum can help point you to some of these specialists. I can't emphasize this point enough.

Folks on this forum are always happy to help you. I hope this helps a bit.

[Mister Dana]

Re: Have monoclonal gammopathy, maybe multiple myeloma

by Mister Dana on Thu Nov 12, 2015 1:33 pm

Just agreeing with Multibilly here. The PET/CT test is amazing. You get a shot of glucose (sugar) tracer to which radioactive fluorine has been chemically attached. It concentrates wherever you have inflammation or cancer. The scanner does a CT scan of almost your whole body while also detecting positron radiation coming from the tracer. A computer decodes all the signals and overlays the images for the radiologist to examine for "hot spots" like bone lesions or plasmacytomas. Don't worry about that big hot spot at your bladder; that is just your urine already getting rid of the tracer . No worries about the tracer anyway, as it's radioactivity decays very quickly.

[GinnyD]

Re: Have monoclonal gammopathy, maybe multiple myeloma

by GinnyD on Sat Nov 14, 2015 5:23 pm

Hi Nancy.

I'm here for the same reason. Went in for testing for Parkinson's Disease, got a call from the Movement Disorder Specialist yesterday saying that she has all of my labs/scans/tests back, and I do have PD, but I also have an M-Spike. She referred me to an oncologist, and used the words, "Multiple Myeloma."

So here I am.

37 years old. Married. Two small children.

And really annoyed.

But also thankful that I found this site. Thanks for sharing.