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

Re: Could I have multiple myeloma?

by akers54 on Mon Jul 04, 2016 11:45 am

I kinda thought that was all it meant. It's hard to remain calm when the doctors start mentioning things like cancer. And it was a holiday weekend, so that left me wondering for an extra day. But I'm glad my appointment is first thing in the morning.

Thank you again for replying.

akers54

Re: Could I have multiple myeloma?

by akers54 on Tue Jul 05, 2016 10:34 am

I went to the doctor today. They referred me to a hematologist / oncologist at the Cleveland Clinic.

I asked about my M-spike level and he said 455. But that can't be right, can it? Did he mean 4.55? He seemed to think I have myeloma. He talked to me about treatments.

akers54

Re: Could I have multiple myeloma?

by Multibilly on Tue Jul 05, 2016 1:43 pm

You can't have a total IgA of 1100 mg/dL with an IgA M-spike of 4.5 g/dL. Maybe this will help you understand why I say this.

The way to think about your total IgA when you have an IgA monoclonal gammopathy is as follows:

Total IgA = IgA M-spike + Normal IgA

In your case, your total IgA = 1100 mg/dL.

A normal IgA level is between 41 and 414 mg/dL (note that the normal range for your testing company might be slightly different; this is why it's always good when you post a lab number to include the units of measure and the normal, or "reference", ranges).

So, assuming you have a normal (healthy, polyclonal) IgA level in the middle of the normal range, that would be about 220 mg/dL. Therefore, your IgA M-spike should be something like 1100 mg/dL - 220 mg/dL = 880 mg/dL = 0.88 g/dL (+/- ~ 0.2 g/dL).

So, it's likely that your M-spike was actually reported as 455 mg/dL (0.455 g/dL), which is a pretty small M-spike. In this case, there might be an extra amount of normal (polyclonal) IgA in your blood due to something such as an infection. The extra polyclonal IgA might allow for the possibility of a relatively small 0.455 g/dL IgA M-spike accompanied by a total IgA level of 1100 mg/dL.

Make sense? In any case, multiple myeloma specialists know how to sort all this out. There is also a new, crafty test to help specialists accurately measure monoclonal IgA disease burden.

When you see the specialist at the Cleveland Clinic, make sure to ask for paper copies of all your lab tests (unless they are posted online already). This is something you want to routinely do at every appointment.

Let us know how things turn out the Cleveland Clinic.
Last edited by Multibilly on Tue Jul 05, 2016 6:48 pm, edited 1 time in total.

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

Re: Could I have multiple myeloma?

by sadiamitil on Tue Jul 05, 2016 5:25 pm

Hello Akers54!

My husband is going through the same experience. I know this is a difficult time, but stay strong.

I pray and hope everything will be alright very soon for you. I think MGUS does not always develop into active myeloma. So we should stay positive and hopeful :)

All the best
regards

sadiamitil
Name: Sadia R
Who do you know with myeloma?: Husband, Osteosclerotic myeloma( POEMS)
When were you/they diagnosed?: Augus, 2016
Age at diagnosis: 38

Re: Could I have multiple myeloma?

by akers54 on Thu Jul 07, 2016 9:28 pm

Thank you, the doctor clarified my M-spike is 1.6 g/dl. My monoclonal protein level was 455.6 mg/dl. And it was IgA. If that makes any sense? I'm sure the oncologist will tell me more Tuesday. I will be praying for your husband and you!

akers54

Re: Could I have multiple myeloma?

by Multibilly on Fri Jul 08, 2016 8:50 am

Hi Akers54,

Thanks for clarifying these numbers. But note that the terms used in multiple myeloma can be a little tricky.

Your M-spike figure is actually the monoclonal protein level in your blood (aka M-protein, paraprotein level, etc). A 1.6 g/dL M-spike is still a pretty modest figure and doesn't necessarily suggest symptomatic multiple myeloma (as opposed to MGUS or smoldering multiple myeloma).

I'm not quite sure what the 455.6 mg/dL figure actually represents. It could be a serum free light chain number or something else altogether.

In any case, just be sure to ask for copies of all your current lab results when you see your doctor and let us know what happens next Tuesday.

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

Re: Could I have multiple myeloma?

by JimNY on Fri Jul 08, 2016 9:25 am

Welcome to the forum, Akers54.

Multibilly has been giving you some very helpful feedback, as he usually does. I just thought I'd add one or two things.

Although most people with multiple myeloma and MGUS have only one type of monoclonal protein, such as IgA or IgG, it is possible to be "biclonal" -- that is, to have two types of monoclonal protein. In that case, a person's M-spike is calculated as the total of each of the two types of monoclonal protein they have.

So, hypothetically, your 1.6 g/dL M-spike could be the total of a 455 mg/dL (0.455 g/dL) IgA monoclonal protein level and 1.145 g/dL of some other type of monoclonal protein.

I say "hypothetically" because I don't think this is really what is going on in your case. Your IgG and IgM immunoglobulin levels are so low that you can't have 1.145 g/dL of either IgG or IgM monoclonal protein to give you a total M-spike of 1.6 g/dL, So something isn't quite right about the numbers you've been given.

I think that Multibilly is on to something when he says that your 455.6 mg/dl number is probably something other than a monoclonal protein level. As he suggested, it could be either your kappa or lambda free light chain (FLC) level. You might want to check this.

I don't think any of this will really be cleared up until you have your lab results in front of you and can review them carefully.

JimNY

Re: Could I have multiple myeloma?

by akers54 on Fri Jul 08, 2016 11:38 am

It does all seem very confusing. She had sent me a message on my chart answering my questions and that's how she explained it. That an M-spike refers to a monoclonal protein that was found on my labs, with level of 1.6 g/dl. Your serum monoclonal protein level was 455.6 mg/dl. And was an IgA level. Yes he has given me so much insight. Thanks so much Multibilly!

akers54

Re: Could I have multiple myeloma?

by akers54 on Fri Jul 08, 2016 6:06 pm

I have one more question about something I don't understand. They said I have a high beta level and low gamma. Does anyone know what that may mean? Or what it is?

akers54

Re: Could I have multiple myeloma?

by Multibilly on Fri Jul 08, 2016 10:25 pm

These are the levels of different fractions of proteins that are measured by your serum protein electrophoresis (SPEP) test. These indications are more useful to the pathologist who is interpreting the SPEP graph than they would be to you. But if you really want to get into the nits of what they mean, you can review this article:

O'Connell, T.X., et al., "Understanding and Interpreting Serum Protein Electrophoresis," American Family Physician, 2005 (full text of article)

But rather than get caught up in understanding these SPEP fractions at this time, I might suggest that you instead get a better handle on some of the more basic lab results, such as your serum free light chains, IgG / IgA / IgM, M-spike, creatinine, calcium, and hemoglobin levels. Those are the key markers that you will be concerned with over time.

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

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