Is there anything to help stop or slow progression of MGUS?

Posted by amyboylan1 @amyboylan1, Oct 12, 2024

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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@gweiman

Great news, and congratulations on your progress. What is MSK. Where can I learn more about the plant based whole food diet?

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https://www.mskcc.org/cancer-care/clinical-trials/22-175
Here is a link to the trials altho it doesn’t give much info about the diet itself.
Congratulations to @ajbonett !
That is amazing. If you have a diet link or info you can share with the forum and which supplements you took (algae omega 3 and Curcumin?) we would appreciate it. I understand that some participants were provided the meals so you may not have a diet list. Keep us posted!

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@ajbonett

I was diagnosed with MGUS about 2 1/2 years ago and have now progressed to Smouldering Myeloma. I joined a medical study out of MSK called a nutrivention study. Basically, they are looking to see if they can stop the progression of MGUS and Smouldering Myeloma through using a whole-foods, plant-based diet. I started the diet at the beginning of August and by the end of the month my M-Spike and light-chain ratio had dropped by more than half. I am now almost 3 months in and will have new labs drawn next week. I can't wait to see if they have dropped even further. I have also had a big drop in my inflammation which has helped my energy levels and lost 23+ lbs as of this morning. I feel like a new person. My husband is doing it with me and his cholesterol has dropped from borderline to perfect levels and he has lost 15 lbs.

Starting the diet wasn't as tough as we thought it would be. It's the elimination of dairy that is the hardest for us. But we have done a lot of research, gathered some fun recipes, and look at it as an adventure. We are learning to cook without oils, and we use mostly mushrooms and beans instead of tofu or "vegan meats." I forgot to mention that I limit my "added sugars" to less than 5 grams per day, and some days have no added sugars. Limiting the sugars is very important because cancer often uses them as "food" to grow.

I will also tell you that while my "study hematologist" and endocrinologist were thrilled with my results in such a short time, my regular hematologist was not. Earlier this week was the first time he saw my study results. He actually seemed a bit annoyed that I was going this route and feeling great. He kept asking if I was hurting anywhere and downplayed my test results even though they were there in black in white. I was very disappointed in him not acknowledging that I was doing better without any medical intervention.

So, to answer the question of both you and the OP... YES! There is something you can do. You will need to set your mind to it, but it is so much better than waiting and doing nothing, and then taking harsh drugs in a battle that you could possibly have avoided. I wish you well whatever you choose to do. Feel free to reach out privately if you want more information.

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This is so positive. Thank you. Would you be willing to share some of your recipes or recommend how I might find some. I really want to try this diet. I feel like I have no control and am wondering how I might be able to help myself. I am really scared of the progression. Thanks so much.

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Great news, and congratulations on your progress. What is MSK. Where can I learn more about the plant based whole food diet?

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@sheryl71

Yes, I was told the same thing nothing can be done about it. I'm what they call obesity and I have fatty liver disease but if I lose weight it will help out a lot. I don't know how I feel about this because If I lose weight which I want to do I don't believe it will help out the MGUS. I'm new to it and also why I'm here . I wanted to see what everyone is doing with the MGUS? I just went (Friday Oct 11th) for blood work to be done every 6 months now but Im worried because to me the levels are high and they go up and down . I hurt all the time but the Dr says its not MGUS I get worried about it I'm tried all the time and very little I know about it. I don't if everyone else has this or not and maybe it can be something else but I just had a physical and blood work Dr runs a full panel of blood work and it shows everything is good. My thyroid is low but now other tests show nothing to worry about My Igg is 2,202 which is high my Kappa Flc is 4.26 which is high and my Kappa/Lambda Flc is 2.82 which is high my total protein is 9.4 which is high and my IgG in April was 1,861 meaning it has went way up

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I was diagnosed with MGUS about 2 1/2 years ago and have now progressed to Smouldering Myeloma. I joined a medical study out of MSK called a nutrivention study. Basically, they are looking to see if they can stop the progression of MGUS and Smouldering Myeloma through using a whole-foods, plant-based diet. I started the diet at the beginning of August and by the end of the month my M-Spike and light-chain ratio had dropped by more than half. I am now almost 3 months in and will have new labs drawn next week. I can't wait to see if they have dropped even further. I have also had a big drop in my inflammation which has helped my energy levels and lost 23+ lbs as of this morning. I feel like a new person. My husband is doing it with me and his cholesterol has dropped from borderline to perfect levels and he has lost 15 lbs.

Starting the diet wasn't as tough as we thought it would be. It's the elimination of dairy that is the hardest for us. But we have done a lot of research, gathered some fun recipes, and look at it as an adventure. We are learning to cook without oils, and we use mostly mushrooms and beans instead of tofu or "vegan meats." I forgot to mention that I limit my "added sugars" to less than 5 grams per day, and some days have no added sugars. Limiting the sugars is very important because cancer often uses them as "food" to grow.

I will also tell you that while my "study hematologist" and endocrinologist were thrilled with my results in such a short time, my regular hematologist was not. Earlier this week was the first time he saw my study results. He actually seemed a bit annoyed that I was going this route and feeling great. He kept asking if I was hurting anywhere and downplayed my test results even though they were there in black in white. I was very disappointed in him not acknowledging that I was doing better without any medical intervention.

So, to answer the question of both you and the OP... YES! There is something you can do. You will need to set your mind to it, but it is so much better than waiting and doing nothing, and then taking harsh drugs in a battle that you could possibly have avoided. I wish you well whatever you choose to do. Feel free to reach out privately if you want more information.

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Yes, I was told the same thing nothing can be done about it. I'm what they call obesity and I have fatty liver disease but if I lose weight it will help out a lot. I don't know how I feel about this because If I lose weight which I want to do I don't believe it will help out the MGUS. I'm new to it and also why I'm here . I wanted to see what everyone is doing with the MGUS? I just went (Friday Oct 11th) for blood work to be done every 6 months now but Im worried because to me the levels are high and they go up and down . I hurt all the time but the Dr says its not MGUS I get worried about it I'm tried all the time and very little I know about it. I don't if everyone else has this or not and maybe it can be something else but I just had a physical and blood work Dr runs a full panel of blood work and it shows everything is good. My thyroid is low but now other tests show nothing to worry about My Igg is 2,202 which is high my Kappa Flc is 4.26 which is high and my Kappa/Lambda Flc is 2.82 which is high my total protein is 9.4 which is high and my IgG in April was 1,861 meaning it has went way up

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Thanks for responding. So you have a ratio too. I wonder why I was not put on that medication.
I have m spike, high Kappa light chains and a ratio

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@amyboylan1

Thanks. I also have a ratio with my light chains and an elevated kappa cell score

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As do I Amy. My Kappa free light chains have been high all along. I’m on Zanubrutinib for a year now and my paraproteins have not continued to go up but neither have they gone down. I’m stable is about the best I can currently say.

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@1oldsoul

I have found good results for inflammatory pain in general with Qunol Turmeric Enhanced Absorption 1500 mg (in 2 capsules) which has 95% Curcuminoids. Make sure to check your iron while on Turmeric supplements since it may lower iron absorption in some individuals. I believe there are different versions so I have included a pic. I also have MGUS diagnosed in 2021 with high IGM and low IGA and IGG with normal light chains and have not needed a bone biopsy or PET scan yet. I am 70 years old and in good health and have always eaten a mostly plant based diet with very little processed foods. Meaning my diet emphasizes whole foods rather than what you find in a box or already prepared. Several months ago I switched to Doctors Best Curcumin with Meriva on the advice of a naturopathic physician. I go in for labs next month (every 6 months) so we’ll see if it makes any difference. I have also started Red Light therapy using the Redrush 400 from Redtherapy Co mostly for Plantar fasciitis on my left foot and degenerative disc in my lower back and in only 2 weeks I have noticed 50% or better reduction in pain and swelling in my heel so I am very encouraged! It was recommended by Energy Blueprint and if you use that name as a coupon code you will get a discount. (Saved me $100!) Since I have always walked 2-4 miles every day since I retired in 2019 the plantar fasciitis was not healing although I had to limit my walks to 2 miles and now I am slowly increasing to 3 again! There are some studies (check Sloan Kettering Memorial) that a 100% plant based diet may have beneficial outcomes for MGUS/MM. I will update here in November if there are any beneficial changes in my labs.

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Thank you so much.

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@amyboylan1

Thank you so much. Could you tell me the name of the tumeric you use please. I just have regular tumeric capsules from Costco

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The curcumin that I use is Qunol brand, but there are a number of supplement companies. Good to check reviews online. FDA does not regulate supplements so no guarantee on what one gets. I also take a multivitamin, B complex, fish oil, and calcium but mostly because of other health stuff. It is good to get a complete bloodwork count of your vitamin D, electrolytes, and other markers.

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