I was just diagnosed and I’m very worried. I’m 49

To all those reading my other post, let me explain in more detail what’s going to happen after being told you have MGUS. There are three types of Immunoglobulin your MGUS must be classified into one of them. IgG is the most common, IgA is rarer and IgM is the rarest. IgM is what mine is classified as. Next it’s classified as Kappa or Lambda, Lambda is the more dangerous I would say , So mine is IgM Kappa. Next classification is it light chain or heavy , think of it as this “Y”, the two upper parts are light chain and the bottom is the heavy. Mine is Kappa light chain IgM, a rare form of MGUS, with me so far. Your 24 hour urine collection will determine if your body is producing the dreaded M Protein, also known as paraprotein. It will be called your M Spike, it will be this protein that will indicate if your MGUS is progressing towards a cancer. The number you don’t want to see your M Spoke is “.5” (point 5) mine is .56, yep, that indicates my MGUS is progressing towards the “Big C”. Not to scare you, but people with IgM are more likely to progress into cancer than the other two, IgG & IgA.

Progressing, in order for your MGUS to progress, your M Spike will keep going up, as will your White Blood Cells, your T Cells and other symptoms. Depending on what form of cancer you are progressing. If you start to progress, Multiple Myeloma is usually what you’ll get. But you can also progress to Leukemia, Hodgkin’s Lymphoma, Non Hodgkin’s Lymphoma, and Waldenstrom Macroglobulemia. Indications are that I’m headed for WM.

Just remember this, because you have MGUS, you could go the rest of your life without getting cancer. Only 1 out of every 100 will progress to cancer and I’m the unlucky one. MGUS is a slow progressing symptom, most times you will develop it in your 60’s or later. You could also have it for 20 years and never know it till it’s accidentally discovered or it causes a symptom. If your in the 1%, most cancers are slow to progress but you can get a very aggressive one. That’s the one you need to catch as early as possible to start treatments. I hope I didn’t scare you, I’m just trying to be helpful and realistic. That’s why I set up my funeral last week. Like the Boy Scout motto says, “Be Prepared!”

Which Mayo Clinic do you goto? I was diagnosed recently and trying to decide where I go.