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

Posted by amyboylan1 @amyboylan1, Oct 12 10:14pm

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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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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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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@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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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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@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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@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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@gweiman

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

Jump to this post

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I was diagnosed with MGUS in 2022. I had a M spike in my bloodwork. I had a bone marrow biopsy which evidenced a gene mutation MYD88 which then led to 2023 diagnosis of Waldenstrom’s Macroglobulinemia, a rare non-Hodgkins blood cancer. I am asymptomatic and age 73. I get bloodwork now every six months “watch and wait” scenario. I feel fortunate knowing all this but I do live a “normal” life knowing my protein levels change with every blood draw.

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My MGUS founded over 12 years ago. I'm 54 years old now. They haven't got any treatment or advices, only blood tests once a year and I can only hope that the results are as bad as every other year. When I was working at the school where were mold (I'm sick from mold since 1980), the IgA get higher. But here in Finland nobody knows anything about MGUS or how I quickly I'll got infected by viruses, COVID or adeno or so. I don't even remember, when I felt myself healthy. I think I have long COVID, but here in Finland they don't even notice that either. So lonely with my problems.

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