[Nomareel]

Slightly new, have MGUS, but moving towards smoldering

by Nomareel on Sat Oct 04, 2014 11:32 pm

At age 29, I had a physical which my GP thought I should follow up on. Turns out I had a lesion on my right humerus and, with my elevated white blood cell counts, they automatically thought I had plasmacytoma. I went through a year of testing – bone marrow biopsy, needle biopsy at the lesion site, to eventually an invasive opening to direct site of lesion. All were inconclusive, as they found nothing, so I was diagnosed with MGUS. This was 8 years ago.

At present, my numbers have been increasing and my onc wants me to have another bone marrow biopsy. Sigh. I need to educate myself some more on this. When I asked if he thought I would stay in MGUS for 20 years, he said he thinks not. And that I'll likely be moving into the smoldering stage.

I've been really down about this. Hoping to learn more about my condition from this forum.

[Ian]

Re: Slightly new, have MGUS, but moving towards smoldering

by Ian on Sun Oct 05, 2014 4:56 am

Welcome to the forum, Nomareel. As you already seem to have noticed, there are lots of people here who should be able to help you and you try to determine what is going on with your disease and what to do, if anything, if things change.

I'm sorry that your lab results suggest you may be progressing to smoldering myeloma. I hope the bone marrow biopsy proves your fears to be unwarranted.

If you have any questions that we can answer, please let us know.

Good luck!

[Multibilly]

Re: Slightly new, have MGUS, but moving towards smoldering

by Multibilly on Sun Oct 05, 2014 7:47 am

Nomareel,

Welcome to the forum.

Your doc is likely just trying to prepare you for the "chance" that your bone marrow biopsy might come back with a plasma cell percentage higher than 10%. Remember, if you are diagnosed with SMM based on a new bone marrow biopsy, you very well may end up going through the rest of your life in a smoldering multiple myeloma condition...and never require treatment or be any worse for it.

You don't mention what your key serum markers are now (M-Spike, free light chain values, hemoglobin, creatinine and calcium)....nor what they were when you were first diagnosed with MGUS.

[Nomareel]

Re: Slightly new, have MGUS, but moving towards smoldering

by Nomareel on Sun Oct 05, 2014 8:04 am

I'm not good with medical terms but I do know that I was flagged because my protein levels are too high. He keeps mentioning IgG, but it just doesn't register with me.

[Multibilly]

Re: Slightly new, have MGUS, but moving towards smoldering

by Multibilly on Sun Oct 05, 2014 8:21 am

Nomareel,

Understood you may not deal that well with medical terms/numbers. IgG is the most common kind of immunoglobulin to be involved with MGUS, SMM, etc.

Again, remember my earlier comments regarding SMM. Progressing from MGUS to SMM doesn't mean that you would require any sort of treatment ... and you may very well stay in that category the rest of your life.

So, try to take it one day at a time and get through your next bone marrow biopsy. We are happy to help along the way with trying to answer any questions.