@theadosi
Hi,
I can tell you depending on your numbers, the diagnosis can be scary at first because a simple google search will always show multiple myeloma. So don’t be anxious, and like I told my parents I’m worried you should be worried and I’m not worried. While I was going through this, my mom was also finding out that she had cancer so you can imagine. But once you actually do more research on sites like the Mayo Clinic, pub med medical journals you’ll get a better understanding of what having MGUS means and how to live with it. I do always suggest for everyone first starting out is put together an Excel spreadsheet with your main blood numbers, which would be your M Spike immunoglobulins your Kappa lambda number as well as the ratio and a few others but it’s important to know what you’re looking at most people with MGUS will never progress to multiple myeloma. It’s 1% a year in terms of progression rate while most people with MGUS are diagnosed at an older age so 1 % a year isn’t much at 65. So it is important to check your numbers now if you go to the iSTOPMM study you can find a helpful calculator on whether or not to get a bone marrow biopsy. I do suggest, if you haven’t already see a hematologist oncologist (Hemoc) and you wanna find someone who specializes in myeloma or plasma cell neoplasm because some hematologist aren’t as well educated in a lot of the new research that’s out now. With all medicine, everything is evolving so educate educate educate. I was diagnosed when I was 37 and then my m-spike was just .08 now about 6-7 years later it’s doubled and 8% involvement. Does your doctor have you on a blood work schedule? I have bloodwork every four months but because of all of my blood work numbers and other things I’m considered high risk MGUS low risk SMM. But remember in the end, it’s our job to be our own advocates so it’s important to do the research and try to make sure you find the most up-to-date information. There’s also a international myeloma foundation that has a lot of info and they will send you a lil booklet to your house. One which I find very helpful for newbies is one on “understand your test results” and “MGUS/ SMM” . Also, your physical and mental health are incredibly important for your well-being. You need to make sure that eating clean and healthy becomes an everyday routine while eating healthy will not stop any progression if there’s going to be some but God forbid it does progress MM you are in a better situation having good physical and mental health than none at all. Also, once you start doing some research on the stuff that goes in our body in the United States as opposed to other countries then you start to realize why so many things that we eat in America are illegal in other countries. I love gardening and love vegetables so I made a huge vegetable garden not only does it allow me to taken healthy foods, but also aids and mental health.