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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dazlin | @dazlin | Aug 3, 2022

In reply to @mommatracy5 "I was just diagnosed and I’m very worried. I’m 49" + (show)

@mommatracy5 , I understand your worry. Feeling worried is quite natural. I was upset also when I found out, and so was my family. I still feel concerned before each test. Now after a few years of no progression, I see my worry has only added more stress and un happiness in my life...for evidently, no good reason. I'm still fine, nothing has changed, so why would I entertain such worrisome thoughts. I'll deal with whatever happens, if and when it happens. I've been through sooooo many other types of medical tests, and a few surgeries that all looked super scary...but each turned out either negative for disease, or something was caught before it developed. It was always a great relief and happy, thankful ending...I could kick myself for ever worrying. I'm not doing that anymore!! Again, I understand your concern, and 49 is young...that may be a plus in your case. Kick out the bad thoughts, and continue your testing...then go from there. Please enjoy each day...worry robs us of joy.

Patty, Volunteer Mentor | @pmm | Aug 4, 2022

@mommatracy5 I am firmly rooted in the “try and keep your worry to a minimum” camp. The stress of worrying about impending doom can actually make you feel bad. With MGUS The statistics are really on your side. Make sure you go in and get your check ups every three months or every six months as recommended and rely on your bloodwork. Your body will tell you what’s going on. And probably… Not much.

The upside of all of this attention to your blood chemistry is that not much is going to sneak in there and zap you while nobody is looking. Sometimes I think I have way too much information about my body chemistry. They will watch your kidneys… That’s always a good thing. At any rate, with good medical care you should be on top of what is happening health wise.
Try to relax. Enjoy each day.

Ginger, Volunteer Mentor | @gingerw | Aug 4, 2022

In reply to @mommatracy5 "I was just diagnosed and I’m very worried. I’m 49" + (show)

@mommatracy5 Tracy, please pull up a chair, and a cup of coffee or tea. Ice water if you prefer, or lemonade. Let's chat.

Getting a diagnosis that takes us by surprise, and makes us fearful, is sure to put a cloud over our day. Been there, done that, got the t-shirt. Sometimes we have an inkling something isn't right, other times, it sneaks up on us. Let's focus on what happened to you. Now, recall that each of us is different. Our life story, our medical history, how we got to where we are today.

Our bodies are miracle machines. All those systems working independently and then together, to keep us going! Getting the MGUS diagnosis may not lead to anything more. For many, it is simply that, and monitored for years to come. It is important that you find confidence in your medical team, that you feel they listen to you and won't lead you astray. Educate yourself, but do not dwell on the negative. Be your own best advocate. Develop or continue healthy habits, including exercise, eating, relationships, hobbies, work. Find what is meaningful in your life. If you feel the need for help to cope with matters, emotionally or mentally, please do reach out to a trained professional.

I was diagnosed with MGUS in 2017. Because I am an overachiever, and just can't let well enough be left alone, I advanced into smoldering myeloma in 2018, then multiple myeloma kappa light chain in 2019. But that is definitely not how the big majority of people go, okay?

I guess what I am saying, in a nutshell, is to not get your head and heart too wrapped up in the words of your diagnosis. Follow your doctor's advice to you, and don't fail to give your input to them. There are a lot of important things in life to consider, and we simply cannot put a lot of energy into something we cannot control. Please be gentle on yourself. If this resonates with you, let me know.
Ginger

aaamadre | @aaamadre | Nov 26, 2022

In reply to @mommatracy5 "Me…I’m wondering if that’s what did it." + (show)

Me, Pfizer

pcb | @pcb | Nov 27, 2022

I have been diagnosed with mgus for a bit over a year. I also have lung sarcoidosis, which was found at the same time. A friend, not a doctor, suggested I go on an anti-inflammatory diet. My recent blood work shows slight improvement in every area. If you can find a nutritionist you trust it is worth a try. In my case everything I eat is organic or fresh caught ( I am a pescarian). There is no caffeine, sugar, dairy, alcohol, wheat, and none of the nightshade vegetables. Basically it is not much fun and a lot of work but I feel better, the numbers are better, I lost 20 lbs and my blood pressure has gone down 40 points. The mgus and the sarcoidosis have not progressed in this last year. Good luck!

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.

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!”

Jump to this post

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

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

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 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