Is there anything to help stop or slow progression of MGUS?
I am wondering if there is anything anyone is doing to stop or slow the progression of MGUS. I m recently diagnosed and have a lot to learn. My oncologist said there is nothing that can be done. Also could some of you share how long you have had MGUS. I am like I’m sure like all of you very concerned about my MGUS processing. Thank you.
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I was first diagnosed with MGUS in 2002 - 24 years ago. I have not progressed yet so maybe I have some credibility. I should add that my hematologist for 19 of those years was certain I would progress: this was because my dad had smoldering myeloma; a paternal first cousin died of acute myelomonocytic leukemia; I had and have immunoparesis - IgM and IgA. Anyway, I had to have bloods drawn every 3 months and I saw him at least twice a year. That hematologist retired and my current hematologist, a very well known and respected MM specialist does not think I will progress. I suspect he is relying on all sorts of clinical variables - some of which are just “gut based.” I don’t know. Probably Lady Luck has played a role. Possibly taking a statin drug and also an anti-inflammatory (Celebrex) MAY have helped. (There is research supporting the role of statin drugs in preventing myeloma and also contradictory research for celebrex. ) However, i have led a happy life; been buried in my work - and still am at age 83; am physically active - walking four miles a day and swimming - in my own private pool; am and have always been mainly a vegetarian although I eat seafood; sleep well; have not had any colds, flus, etc. in more than 15 plus years; had nine Covid shots and all other recommended vaccines; do not travel except in our boat for recreation; do travel by car once s year 1500 miles one way for health care now - before it was more often.
Many people have MGUS: They just don’t know it. The research shows that those of us who are aware tend to
Live longer and fare better if we do progress. My advice to you is to “live your life.” There is research supporting the role of maintaining a normal BMI and also a plant based diet a I translate that to mean a fruit and vegetable, fish and seafood diet. And don’t forget to engage in exercise you enjoy.
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11 Reactions@dcuste
Good afternoon. Been awhile since we chatted but I wanted to thank you for letting us know about Stelo CGM. I finally ordered two (1 months worth) to try after my A1C labs keep showing 1 point away from prediabetes. What a great tool it is. I was shocked to see my blood sugar spike when I ate rice cakes! This will definitely help me stay on track and keep my blood sugar under control. How have you been doing? Have you found any supplements or anything else that has helped on a consistent basis? If I remember, you have IGM MGUS like I do. Mine was diagnosed in 2021 and my IGA and IGG have improved and IGM is holding steady around the 670 mark with normal light chains. Bone marrow biopsy was normal. I have been using a red/near infrared machine at home consistently after it cured my plantar fasciitis so quickly (a miracle really) and also has been a great help with degenerative disc pain so I am hopeful that it will also help control the MGUS somehow. I hope you are well.
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1 Reaction@amyboylan1 Whole foods plant based. Very little, if any, processed foods including oils. It is time consuming but you can prep ahead a few days and that helps. We have learned to keep many foods in glass canning jars and use a suction thing to seal it. This keeps berries and other fruit in the fridge much longer without chemicals. We also started canning our own sauces so we know what is in them.
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2 Reactions@ajbonett hi, I am feeling desperate. Could you please give me some idea of the diet you are following?
@1oldsoul I'm not a fan of tofu, so we use lots of beans, mushrooms, and nuts. We have learned to use lion's mane mushrooms as a meat substitute in teriyaki dishes, shaved "steak" sandwiches, etc. We use Forks Over Knives for lots of recipes and information.
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2 Reactions@ajbonett
Thank you for sharing that information. Can you give us an idea what your diet looks like in the form of proteins?
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1 Reaction@1oldsoul I was in one of the Nutrivention studies. We were given the supplements for several months at the beginning of the study but did not change our diet at that time. The diet came AFTER we stopped taking the supplements. I saw improvement in my numbers with the diet. I also felt better and had more energy. I had the placebo for the supplements and saw no change at that phase. Currently, I am in the SMM stage and am considered stable. I've gotten away from the diet a bit from the holidays, but am going back hardcore this week because I feel so much better when I am on it. Feel free to reach out if you have more questions.
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4 Reactions@colleenyoung
It was my understanding when I first read about this clinical trial a couple of years ago it stated the participants were also provided curcumin and omega 3 supplements with the diet, yet there was no mention of the supplements in the results. Just pondering how the researchers were able to determine where to attribute the benefit? Perhaps others are asking this same question or did I miss something?
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1 Reaction@colleenyoung
Yes,thank you !
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1 Reaction@jellyboo hey there! Thanks for providing the link to the study. I don’t know if I’m reading incorrectly but looks like the diet only helped 10% slow progression. I wonder if it has more to do with lower BMI that resulted from the diet. Wish there were more studies.