MGUS diet: Any tips on food to enjoy or prevent progression?

Memorial Sloan Kettering Cancer Center is doing research on diet and nutrition. Dr Urvi Shaw. Check it out. Also on YouTube.

I found out this year that i have MGUS. I am scared and was told to go back to my doctor every 6 months. This feels like… wait and see until you get multiple myeloma…like a ticking time bomb. Can anything be done to prevent the progression to MM?

I think it’s important to note that a very small percentage of patients with MGUS progress to smoldering or multiple myeloma.
I am not an expert. I try very hard to stay away from Dr. Google. Dr. Google seems to focus on worst case scenarios. I was diagnosed about a year ago and I have bloodwork done every three months to ensure that there is not progression. Indeed, there has been virtually none since my first set of bloodwork. I’m grateful for that. Most people don’t have any symptoms with this blood disorder. As a matter of fact, it is usually diagnosed because they are looking for something else. That was the case with me. They did bloodwork in conjunction with a spot I had on my spine which turned out to be osteoarthritis. That’s when they found the M protein in my blood.
Is your physician a hematologist/oncologist? I think it’s important to snag one of those docs and one who has experience with MGUS.
Welcome to the group, although I’m sad that you have to go through the anxiety.

I am seeing a hematologist/oncologist at UCLA. He wants me to get a blood test every six months and see him once a year. My PC doctor discovered it when he tested me for neuropathy. Thank you for your kind words and upbeat message.

@pmm You took the words right out of my mouth! Absolutely right, a small percentage of people progress to smoldering myeloma, and a small percentage of those progress to multiple myeloma. Most people go for years with a simple MGUS diagnosis, even though they may feel it is super critical, thanks to Dr. Google. That is why we rely on and trust our doctors to monitor things.

@momsys You're certainly not the only one who has gone through this. With the latest technologies, finding abnormal values is easier, but it can certainly lead to anxiety and "oh, no! Now what!?" Falling down the rabbit hole of Dr. Google is easy to do. Ask me, been there, done that! UCLA has great doctors, and you're welcome to come here and ask questions. And vent. And share your experience. We're fellow patients, and getting others' viewpoints helps us all.
Ginger

The answer to your question is no. I saw something wrong with my standard bloodwork in 2019 that my regular doctors fluffed off as nothing. So I had to get another pcp because of transportation restrictions. So I asked him to check my blood and do a specialized blood workup. Within 48 hours the cancer clinic in my hospital wanted to see me immediately.

Being a health activist for my body, I was soon seeing an Oncologist/ Hematologist. Bad news followed, I had MGUS. My story is to long and complicated but let me give you the beginning basics. You are at the very beginning of a long journey with the diagnosis of having MGUS. It’s a shock to learn you could get cancer from it but your chances of getting it are 99 to 1 you won’t. In other words, only 1% of all people with MGUS will get cancer. Either Multiple Myeloma, Leukemia or one of the Lymphomas.

Unfortunately, I’m in that 1% as my bad guys progress into it. So stop getting upset, it’s a waiting game right now for both of us. You’ll be going thru a multitude of blood tests and a 24 urine collection to begin your MGUS classification. You could go the rest of your life without a problem. So sit down, relax and eat a bowl of your favorite snack, mine is Strawberry ice cream. I could go into more detailed information but it would only confuse you. So stop worrying, it’s up to your body to decide what’s going to happen, that could be 20 years from now, I’m working on year #4. Good luck,
Becky 1024

I was diagnosed with MGUS also. I get bloodwork every 6 months. I also had a bone marrow test done. It's been about 3 years, no progression of disease. I was concerned for a while, now, I don't worry at all. I eat anything I want and I love my red wine too. I'm thankful for my great Dr's at Mayo clinic, and for monitoring me. I hope you can feel some comfort and thankfulness for the early detection, and being monitored. Try not to worry.

Me…I’m wondering if that’s what did it.

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!”