[costrander]

Newly diagnosed with MGUS - what should I expect?

by costrander on Mon Nov 30, 2015 11:25 am

I went to the rheumatologist for pain in my back, hands, and feet. She had blood drawn and it came back with an "abnormal protein band 1" at 1.2 g/dL (12 g/L). Apparently that is high considering I am only 36.

My PCP sent me to a hematologist who did more tests. My abnormal protein band was the same, but then my IgG is elevated at 1653. My serum lambda free light chain is elevated at 29.6. I also had a bone biopsy and a full skeletal survey because of the pain in my bones, but it showed nothing except some bone spurs in my back.

The oncologist says that right now it is not anything more than MGUS, but I have to be tested every 3 months (because of my age) for quite a while. They also say that there is a 1-2% chance of it becoming multiple myeloma every year.

What should I expect?

This 1-2% does not seem like a big number, but if you add it up, by the time I am 50 that is almost a 30% chance I will have myeloma and that if my protein band just showed up in the last year. If I have had it for several years without knowing then it increases.

[Little Monkey]

Re: Newly diagnosed with MGUS - what should I expect?

by Little Monkey on Mon Nov 30, 2015 10:24 pm

It's hard to predict the fate of persons with MGUS. I mean, there are certain indicators which may suggest a poorer prognosis, but that is not %100 either.

If you do develop any type of bone lesions, the doctors will put two and two together knowing that you have MGUS, you would skip the whole "multiple trips to the ER" trying to figure out what is what, wondering if it sciatica etc.

You also might go through your whole life without moving past the MGUS stage,

[MMFeb16,15]

Re: Newly diagnosed with MGUS - what should I expect?

by MMFeb16,15 on Tue Dec 01, 2015 8:20 am

I was in MGUS at your age. I do not remember my clinical data except protein above ten percent, bone marrow biopsy (BMB) in the twenty percent range. My physician those days said not to worry.

Three years ago, after almost thirty years, my current physician sent me to a hematologist as my blood protein was high. I was going for check-up every six month. Last year August onward, every three month.

In February, it was declared to be at stage IIA, and I started my treatment in March with 25 mg of Revlimid plus 20 mg of dexamethasone per week and Zometa every three months.

I have finished cycle seven, and I am close to remission based on my blood test result and BMB.

I hope my history helps you.