MGUS diet: Any tips on food to enjoy or prevent progression?
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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@bigbob5461
Bob, I’m so glad that you got a chance to speak to your doc. And I’m glad you are asking all the questions! I’m happy to answer what I can and give you support. One of these days I’ll be asking members for support. We are all in a small boat together in the vast sea of life. Sometimes the water gets choppy.
Hugs.
Patty
Patty: so thankful and appreciative of your taking time to respond with comprehensive detail.
All new to me. As of now report from Cleveland Clinic is: no Mprotein from 24 hour urine test, not anemic, no kidney disease, no reason for bone marrow test. I’m scheduled for follow-up in February. Going forward.. I’m increasing my exercise activity, striving for better diet high in antioxidants —fruits, vegetables and drink to counter the lessened antibodies. And, I met with my GP yesterday for 45 minutes and he listed same goals in addition to stay hydrated take multiple vitamin. All I’ve heard is that MGUS is asymptomatic -hence no symptoms. Big thing is I need to constantly STOP thinking about it—and LIVE. Take care.. thanks again for your input. Bob
Hello..thanks again for your feedback..spent 45 minutes with my GP yesterday…the time spent was very positive..the results from the Cleveland Clinic were…no Mprotein from 24 hour urine test, no kidney disease, not anemic, no reason for bone marrow scan..I’m very much an over thinker/analyzer and think some of my feeling is self induced..as MGUS is asymptomatic ..I’ve been too much of a couch potato and am planning to amp up my exercise and change diet to foods and drink with high antioxidants. I’m scheduled for follow-up at clinic in February. Going forward I need to think positive and stop thinking about it. My heart and BP are fine..glucose elevated…working to get that down.thanks again..have a great weekend ..Bob
I got the diagnosis of MGUS in 2021 but a couple years before that I had occasional but recurring days that I felt “off” and sometimes had to spend the weekend resting which was unusual for me. I still have those recurring days that I feel unwell, but I’m unsure if it is because there are way too many nights I don’t sleep well. When I was first diagnosed, I saw the hematologist every 3 months for labs, then the second year he changed it to every 6 months. I think you will find if your MGUS progresses as slowly as mine you will not be thinking of it as much. I keep a spreadsheet of my labs and so I can see at a glance how the numbers are changing. I also told my hematologist that I want to go in and have my blood drawn 1 week or two before I see him- which I can access on the patient portal- so I will have all my questions written down when I see him. Has your general practitioner run tests to rule out any other causes for feeling unwell such as blood sugar or heart issues? My MGUS numbers are relatively low compared to others. Are you seeing a hematologist? Did they give you some idea of where your numbers fall? I have not had a bone scan or bone biopsy because my numbers are low. Try not to worry because I was told the risk of progression is about 1% per year of it progressing to cancer. Taking small steps to improve your overall health I believe will pay off. I’m not sure if the Sloan Kettering Center is still accepting people for their plant based diet studies. I live too far away to participate.
@bigbob5461
When I was first diagnosed, medical people used the word “benign” when they talked to me about MGUS. It was not benign to me in that it could potentially change the trajectory of my life. But looking around and seeing what other health issues others are dealing with puts it in perspective for me. It’s not cancer and I will most likely die of something else if I am not an overachiever (which I do not intend to be).
1. Possible symptoms include annoying peripheral neuropathy in my feet. It is some bad, but it is Irritating. It’s sometimes makes it hard for me to sleep. It also makes me a little wobbly. So a career as world class gymnast is probably off the table. Not to make light of it because it has slowed me down, but I am still very active and try to stay fit.
2. I would like to see a neurologist, and I have been trying to break into that tight little medical clique for over a year. I’d like to get their opinion about possible remedies for the neuropathy. Every six months, I see an oncologist/hematologist for the MGUS.
3. I try to look at the glass half full rather than the glass being half empty. Instead of facing chemotherapy or some other very invasive treatment, I may not have to treat anything as it is unlikely for my MGUS To progress. We are all different so of course one can’t say with absolute certainty, but the statistical risk of progression is 1 to 2% per year.
Having to deal with this at all is not only disappointing, but it can be depressing. I think it’s important for us to utilize our support systems. Talk to trusted friends, get therapy, join a support group, chat with the good people here on this forum.
4. I probably did think about it on a daily basis when I was so newly diagnosed. Nobody ever calms down because somebody tells you to calm down, but I hope that you will trust me when I say that it does get better. It becomes the new normal and something that you probably won’t think about much at all, unless it’s time to go see the doctor again. Then I think about it. But every time I have gone, my numbers are very much the same. Sometimes there’s a little bump here or there but then the next time they go down again. I try to stay in real time and live each day well without cluttering it up with fear and anxiety.
5. Before my retirement I was a medical social worker. I felt then and I feel now that it is such a privilege to talk to people about their fears, but also to be happy with them when things go well.
6. Yes by all means, live your life! Do the things you want to do. Maybe this is a good time to do those things that bring you joy. Spend time with people who make you joyful.
7. Being worried about damage to other organs is a relatable concern. I don’t mean to be Pollyanna here, but when you think about it, you’re going to get excellent preventative medical care because of the MGUS. You’re going to get frequent blood draws and bone scans, perhaps even bone biopsy to look at your bone marrow. They’ll monitor your kidney function and your liver function and look for lesions on your bones. Otherwise you might never even know you are ill, because so much of it would be symptom-free initially. so if something does happen, whether it has anything to do with multiple myeloma or not, there can be early intervention. Who gets that kind of routine preventative healthcare?
8. One of these days maybe they’ll figure it out and there will be a way to treat MGUS. I certainly hope so. Until then we have to do those things that we know contribute to healthy lifestyle such as diet, exercise, and some of our members are having some success with turmeric…curcumin supplements. There are also some studies that are being conducted on plant-based diets. Feel free to jump in on some of those discussions.
Bob, do you mind sharing a little more about your diagnosis. How did they discover the paraprotein and do you see a hematologist/oncologist?
Good Morning! I am a member of Mayo Clinic because I was diagnosed with MGUS last September 2023.
To answer your question above, IBS is IRRITABLE BOWEL SYNDROME, which can come and go with symptoms depending on diet.
I have been seeing a Hematologist/Oncologist since last Fall and so far everything is stable even though I have a high IgG and low ratio. So far I have had a PET scan (normal no lesions), 24 hour urine (normal no protein) and all my other blood work is normal except that I am anemic (I have Thalassemia Minor which is a hereditary anemia), nothing to do there right now even though my Hemoglobin has dropped from 9.9 to 9.6 in a year.
I have not had a bone marrow biopsy, however, I am sure it will come up in the near future just to see where I am in the process of this journey of the unknown MGUS.
Take care everyone and it is nice to have a group that we can all chat with about our concerns with MGUS!
Sandy
Sorry just saw your last post..what is an IBS FLARE UP??
Good morning to you: really appreciate your taking time for me. Your feedback is helpful. Prior to the diagnosis—I was feeling unstable and just night right..but I thought whatever it is I will get a medication or treatment to correct it. Hearing that there’s virtually nothing..it’s hard to think that I’ll have this rest of my life…given this is 2024 and you would think a doctor somewhere will find something…my question is; how long have you had MGUS—what symptoms do you have—and how do you not think about it everyday?? For me it’s only been a week and it’s constantly on my mind.. furthermore I’ve been a couch potato too long and have to get my rear in gear re exercise and gain better eating habits…less sweets more fruits and vegetables and foods high in antioxidants..to combat the lessened antibodies. Overall I feel weak with less energy..I need to get my energy back..as of now it will be hard to walk one mile. Thanks again..appreciate any feedback you have. Bob
I forgot to mention in my reply that I was diagnosed with MGUS in 2021 by a gastroenterologist I was seeing because I kept experiencing IBS flare ups.
Good morning @bigbob5461, so nice to meet you! I am like you in that my mind thinks that my body is still 40, but I think that works in our favor. There is so much science now on the power of positive thinking and I have always been one to challenge my body and tell it “you can do this.” With that said, I think there are very people at age 82 (or 70!) that can say they feel as good as they did at 40 so I think we should count ourselves blessed thus far. I have been dealing with insomnia for 4+ years so that is definitely a factor in my perceived health. But the neuropathy I initially experienced is gone and I have very few days of aches and pains despite having degenerative discs. Up until I developed plantar fasciitis last December, I was walking 3-4 miles every day. All my life I have loved walking and did it on weekends before I retired. About 6-7 years ago I decided to walk to the next town which was 12 miles round trip! I find that walking is wonderful for my mental health and gives me a sense of accomplishment. I am having to baby my one foot now that has plantar fasciitis. There is an active study going on at the Sloan Kettering Cancer Institute on a plant based diet to prevent or slow the progression of MM. Also I have seen some studies on the benefits of Curcumin. Last year my hematologist stated that my monoclonal protein numbers are much lower in comparison to most of his patients even though they have slowly been climbing and have not stabilized. He said he didn’t think it would ever progress to Waldenstrom’s or MM. I have consulted with 2 different naturopathic physicians and neither one could give me any answers on MGUS. I don’t have any other health issues and all my other labs look great so I’m gonna keep doing everything I can with diet, exercise, some supplements, prayer and trying to keep a positive attitude. If I can help you in any way, please let me know.