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

Sorry just saw your last post..what is an IBS FLARE UP??

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

@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?

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.

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

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

@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

Yep. Stay well

I was tested and had increased alpha lightcells and a Protein M that was false. My understanding is as long as the Protein M is not found, there is no cancer.

I am lost here and from reading this post and responses it has been informative. I still do not get the connection to MM?

@bobweller
It’s estimated that 3% of people under 70 and 5% of those over 70 (if I remember correctly) have the M Paraprotein. I suspect the incidence is much higher because unless there are symptoms, the M paraprotein is usually discovered because they’re looking for something else. There are three diagnoses (and some subtypes) for those of us with this pesky M paraprotein. MGUS is not cancer. It’s a “precursor” condition, but that’s not even really accurate because many people who have MGUS will not progress to cancer. Smoldering myeloma and multiple myeloma are blood cancers. Not everybody who has MGUS will get smoldering or multiple myeloma, but everybody who has smoldering multiple myeloma or multiple myeloma had MGU first. At least that is my lay person’s understanding. The risk of progression is very small for MGUS patients. 1% to 2% a year.
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
So if you don’t mind sharing, will there be follow up on your false positive blood test?