[MrsM]

Newly diagnosed with MGUS

by MrsM on Sat Sep 12, 2015 12:02 am

Hi, everybody.

I'm a 38 year old mom of 2 young children, and back in May I went in for a physical and I found out my iron level was very very low. Like a 5. My family physician told me I might be bleeding from some­where, so he sent me to a gastro to get a colonoscopy, and yes, I was bleeding in my colon.

Gastro fixed it and I thought that was the end of it.

So I went back to my family physician about 2 months later to see if my iron level improved, and the next day a nurse called and told me not to freak out, but I'm being referred to an oncologist because my iron did not look any better and something else could be wrong.

So after several labs I was told I have MGUS, but I'm not totally convinced I have it. I have never had a bone marrow biopsy. I just had the Freelite test ran on Friday, and I'm currently waiting on those results. Yet I was diagnosed with MGUS before I even had the Freelite test. So how can the oncologist say I have MGUS if he had not ran all of the tests?

[Little Monkey]

Re: Newly diagnosed with MGUS

by Little Monkey on Sat Sep 12, 2015 8:48 am

Did they mention anything about M-spike (monoclonal protein) findings?

[mrozdav]

Re: Newly diagnosed with MGUS

by mrozdav on Sat Sep 12, 2015 9:00 am

MrsM, I was diagnosed with MGUS after a blood test revealed a higher than normal IgA. This triggered further testing which did not include a bone marrow biopsy. I did not have a biopsy until more than four years later when it appeared that my MGUS was converting to smoldering myeloma. So, if your question is whether your doctors can know that you have MGUS without performing a bone marrow biopsy, the answer is "yes." Of course, they will do several other tests on your blood serum and urine to confirm the diagnosis.

I am so sorry that you have received this news. Wait for the other test results that are pending and see what happens. The situation may be much better than you currently think.

[Multibilly]

Re: Newly diagnosed with MGUS

by Multibilly on Sat Sep 12, 2015 9:13 am

Hi MrsM,

Welcome to the forum!

Little Monkey asks a good question.

Often times, a GP will look at your standard blood tests and see if your total serum protein or globulin levels are high. If one or both are high, he/she might then order what is known as an immunofixation (IFE) and/or serum protein electorphoresis (SPEP) test. The first would tell you if you have any monoclonal (cancerous) protein, and the second test would tell you how much monoclonal protein there is (what Little Monkey calls the "M-spike"). If either of these came back positive for monoclonal protein, they would then very likely run a free light chain assay to see how those guys are behaving. But a doc could give an initial diagnosis of "MGUS" based on just the IFE and SPEP test results and then take it from there (which is where it sounds like where you are right now).

I was originally diagnosed with MGUS based on the sequence of tests I mentioned above (first with an IFE and SPEP) and was then later upgraded to smoldering multiple myeloma once I had more lab tests done, which were followed by a bone marrow biopsy and full-body radiologi­cal imaging.

It would be good to get copies of all the lab tests that they have done so far (they might be online and they are your property, regardless), to see what your doc is basing his diagnosis on so far. The IFE and SPEP tests would be the most telling tests.

Also, how is your hemoglobin level doing given your low iron count?

Hope this helps.

[MrsM]

Re: Newly diagnosed with MGUS

by MrsM on Sat Sep 12, 2015 11:08 am

Also, how is your hemoglobin level doing given your low iron count?

My hemoglobin level is an 8.5.

[Multibilly]

Re: Newly diagnosed with MGUS

by Multibilly on Sat Sep 12, 2015 1:16 pm

I won't mince words here ... that's quite a low hemoglobin level and I'm guessing you must be show­ing symptoms like fatigue as a result of that low hemoglobin level. Monoclonal gammop­athies can certainly cause anemia, and that's one of the more common symptoms of multiple myeloma. But it's not a given that a monoclonal gammopathy is to blame for your low iron and hemoglobin levels, and only a doctor can make that determination.

Assuming for now that your IFE and SPEP tests already indicated a monoclonal gammopathy such as MGUS, and given your low hemoglobin, I might recommend seeking out a good myeloma specialist to help interpret the next set of test results and suggest any next steps. If you let us know what city you are in, folks on the forum can make some recommendations on where to find these specialists.

[MrsM]

Re: Newly diagnosed with MGUS

by MrsM on Sat Sep 12, 2015 3:26 pm

Yes, I'm extremely tired and I have pain all over. I have days when i feel like I have the flu and then a few days later I feel ok. I live in Madison, Alabama.

[Multibilly]

Re: Newly diagnosed with MGUS

by Multibilly on Sat Sep 12, 2015 4:00 pm

You might want to consider a visit down to the University of Alabama at Birmingham, pending what your next test results show.

https://myelomabeacon.org/resources/treatment-centers/#Alabama

Dr. Luciano Costa is a well respected hematologist / myeloma specialist there.

I'm not a doc by any means, but I wonder if you might discuss a blood transfusion and/or iron injections with your doc next time you see him? I'm assuming you are already taking some oral iron supplements?

Let us know if we can help with any questions and good luck.

[MrsM]

Re: Newly diagnosed with MGUS

by MrsM on Mon Sep 14, 2015 9:57 am

Thank you. I will keep you posted!

[blessthischick]

Re: Newly diagnosed with MGUS

by blessthischick on Mon Sep 14, 2015 1:24 pm

Hello MrsM,

I agree with Multibilly 8.5 is very low.

Something to add to the pot ... have you got heavy periods? What about any upper GI symptoms? Have you got black stools? This could indicate bleeding from further up your gut. What caused the colonic bleeding? Sorry if you have already told us that.

Kay