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

Posted by sstillwell @sstillwell, Aug 13, 2021

Hello-any tips on foods to avoid and foods to enjoy that help prevent progression of MGUS? I’ve read avoid radish, cherries, processed, fried. Focus more on fruits. Anyone adhered to special diet and have not had MGUS progress for years? Thank you, Susan

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gina5009 | @gina5009 | Feb 26, 2023

Along with the MGus, I have Trigeminal Neuralgia. I have to take Pregabalin which has already put 10 lbs on me. This I definitely did not need. When you are as inactive, as I am, it is not how much you eat, it is how little you move. I probably eat less than I have in my whole life, and weigh more. I have been told, if the scale goes up any higher, I will probably have to find another medication (not easy). Any suggestions would be greatly appreciated.
Gina 5009

Patty, Volunteer Mentor | @pmm | Feb 25, 2023

You’re welcome! Bon appétit!

Ginger, Volunteer Mentor | @gingerw | Feb 25, 2023

In reply to @pmm "My friend, who is a true Southern cook (reformed), introduced me to smoked turkey legs as..." + (show)

@pmm Interesting study! Fresh fruit and wheat bread! I have been told with my kidney disease, to limit wheat bread, but I eat little of it anyway. No white bread except sourdough, which gives me a great taste. Since last September I have lost and kept off 12 pounds. which was already after a 20 pound weight loss. Once in a great while I have an ounce of wine, sipping it slowly. For fresh fruit, my go to is an apple. Recently due to low potassium levels, I was allowed to add bananas and oranges back to my diet, in addition to taking a potassium supplement. For me, it is a big project balancing my myeloma with my kidney issues, and getting the correct amounts of everything.

A couple of month's ago I bought a package of smoked turkey necks at the store, and really liked the taste of them in a soup! I will look for smoked turkey legs next time. Thanks for that idea.
Ginger

Patty, Volunteer Mentor | @pmm | Feb 25, 2023

My friend, who is a true Southern cook (reformed), introduced me to smoked turkey legs as a protein for soups and beans. It doesn’t have the high sodium content that you get with ham, but the smoked turkey gives you a lot of flavor. I also add fresh spinach to anything and everything. I’m not a fan of a lot of the green, leafy vegetables, so I think that this is enriching my C, A, K and E intake. I have to do gluten free due to celiac and wish I got extra points that resulted in weight loss for the foods I give up.
Fruit. Green veggies. I’m trying to eat more of this and give up sugar. I avoid aspartame.

I have cut back significantly on Chardonnay which lately gives me a dull headache so it’s lost it’s appeal significantly anyway. Retirement helped significantly in my need to consume liquid fortification. Whew!
I did read this …has some interesting information.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6211667/

Patty, Volunteer Mentor | @pmm | Feb 24, 2023

Thank you! Sensible meals.

I can’t give up shrimp. Otherwise pretty similar to the way I cook. I love to cook and try new recipes. I am trying

Ginger, Volunteer Mentor | @gingerw | Feb 24, 2023

In reply to @pmm "Ginger, what kind of foods move the needle for you? I try to avoid red meat..." + (show)

@pmm Ha ha! I had a reply typed out but my computer hiccuped it into another dimension.

I eat mostly chicken and fish. Very little red meat, but it's always been like that. I experiment with soups and stews alot, and the slow cooker can be a great platform for simple meals I like fresh veggies. Being prone to gout, I severely limit pork, and do not eat shellfish or purines like mushrooms.

Recently I found paprika is great for kicking up flavor, and I use a salt-free multi spice seasoning like Lawry's or Dash in almost everything! Don't be afraid to try new combinations. As a dialysis patient, I tend to lose a lot of protein in that process, and freely make up protein shakes [berries, almond milk, protein powder, greek yogurt], hard boiled eggs. Because I tend to have little appetite, I have stopped looking only for "reduced ft/calorie" items so much, and am happy to find something I'll eat!
Ginger

Patty, Volunteer Mentor | @pmm | Feb 24, 2023

Ginger, what kind of foods move the needle for you? I try to avoid red meat although we do use ground beef in some dishes. Mostly chicken with as much fish as I can stand. I wish I liked it more.
Generally speaking I know fruit and veggies are important.
Some MGUS patients endorse a Mediterranean diet as helpful. My hem/onc doc says eat healthy but there isn’t sufficient data to support one diet over others.
I suspect his diet isn’t all that great but shhhhh don’t tell him I said that.

Ginger, Volunteer Mentor | @gingerw | Feb 23, 2023

In reply to @butkus51 "Thanks very much! I have MGUS however the emerging issue is consistently low IgG, IgA, IgM..." + (show)

@butkus51 Once again, your case shows to all of us that we are each in the same boat, but have different seats/views. MGUS and any chronic condition can come with attached complications. Those may or may not be related. My kidney disease is not related to the MGUS and subsequent multiple myeloms advancement. But there are things that bleed over and we are right to educate ourselves. Following a diet that is beneficial to us as an individual [reminder we are all different!] can really help us. I have anemia also, due to the myeloma, and kidney disease. For me, I get injections but also work hard at having a good source of protein and healthy food. Difficult when I have no appetite, but it's a challenge I accept.
Ginger

butkus51 | @butkus51 | Feb 23, 2023

In reply to @becky1024 "To all those reading my other post, let me explain in more detail what’s going to..." + (show)

@becky1024

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!”

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Thanks very much! I have MGUS however the emerging issue is consistently low IgG, IgA, IgM levels. I've also have pernicious anemia (give myself monthly B12 injections) and in 2016 had a massive pulmonary embolism requiring clot busting drugs. Have since been seeing both a respirologist and hematologist. Several months ago the former asked if immunoglobulin replacement therapy had been discussed...I'm speaking with my hematologist today...notwithstanding 5 Covid injections plus flu & pneumonia jabs recently tested positive (again) for Covid and undergoing treatment with Paxlovid...will be glad to share what I can...as others heard when first diagnosed with MGUS it's asymptomatic however as I and others subsequently experienced MGUS is not just a single thread but potentially a myriad of intertwined issues...the Mayo site continues to be a great resource

omemee | @omemee | Nov 30, 2022

In reply to @colleenyoung "Hi @sstillwell, welcome. Let me bring some fellow MGUS members into this conversation like @kandc317 @iain49..." + (show)

I have read many articles supporting curcumin to help with MGUS patients. I just had some bloodwork done. Does anyone have information on what a 2.17 IGA Kappa light chain number mean. It’s a lot higher than a year ago. Lambda was ok.

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