1. < Blood Cancers & Disorders

Stopping Myeloma at the MGUS Stage

Posted by carolesg @carolesg, Jul 14 1:29pm

This has been a recurring theme of mine since dx in 2005 with only a 0.4 Mspike which has now become still more or less stable at 0.5 but with three different “peaks” of both kappa and lambda light chains. I live in Philadelphia where I watch University of Pennsylvania TV ads touting their latest approach to cancer by “intercepting” it at the earliest stages. Voila! Why are we not doing this with myeloma? We could literally stop it in its nasty tracks. Oh yes, I know, it’s because not everyone with MGUS will progress. But if your body is no longer remaining static at a relatively benign Mspike, I say, let’s do something. Think of the hundreds of hours spent agonizing, researching and the countless test monitoring.

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mattymatilda | @mattymatilda | Aug 5 2:31pm

What Numbers need to change in order for you to be certified to have multiple myeloma? I can’t seem to find any information on that.

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1 reply
ajbonett | @ajbonett | Aug 5 8:57pm
In reply to @carolesg "Nutrivention seems to possibly imply nutritional intervention. I wonder if this study is examining whether a..." + (show)
@carolesg

Nutrivention seems to possibly imply nutritional intervention. I wonder if this study is examining whether a meat-free diet will cause MGUS to stop progressing. It’s an interesting proposition. My husband and I were never big meat eaters but we stopped eating meat entirely almost 20 years ago. While my disease has “progressed” from one simple Mspike of 0.4 kappa, in 19 years I now have three bands, one including Lambda, mostly light chains and 0.5 M spike, but have not progressed to actual myeloma. Thank you for all your helpful information and best to you. Carole

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It is nutritional intervention using a whole food plant-based diet, but it is much more than simply removing meat from your diet. I work with a nutritionist every month who sends me resources, answers questions, and teaches me how to make it work for proper nutrition. The diet is basically vegan, so no meat, dairy, or other animal products. Sugars and oils are also severely limited. I'm only a few days in so I'm still finding my way.

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Mentor
Patty, Volunteer Mentor | @pmm | Aug 6 9:58am
In reply to @mattymatilda "What Numbers need to change in order for you to be certified to have multiple myeloma?..." + (show)
@mattymatilda

What Numbers need to change in order for you to be certified to have multiple myeloma? I can’t seem to find any information on that.

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@mattymatilda I think that’s because there are several variables involved. It’s not a static number. I got this from the myeloma association.
Monoclonal Gammopathy of Undetermined Significance (MGUS) and smoldering multiple myeloma (SMM) are both clonal plasma cell proliferative disorders that can progress to multiple myeloma (MM):
MGUS
Affects about 3% of people over 50 and 5% over 70, and has a 1% per year risk of progressing to MM. MGUS is usually asymptomatic and is often discovered by chance during blood tests for other reasons. Risk factors for MGUS progressing to MM include M-protein levels over 1.5 g/dL, the size and type of M protein, the number of bone marrow plasma cells, and FLC ratio results.
SMM
An intermediate stage between MGUS and MM, SMM is characterized by more than 3 g/dL of serum M protein and more than 10% clonal plasma cells in the bone marrow, but without evidence of end-organ damage. SMM is asymptomatic, but has a 10 times higher risk of progressing to MM than MGUS in the first five years after diagnosis. Positive PET/CT results are also associated with a higher risk of progression to symptomatic disease.

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8positive | @8positive | Sep 12 8:47am

I have been doing pescatarian and trying as much as possible to avoid inflammatory foods like tomato eggplant although sometimes have potatoes.
What I haven’t done is avoid milk and wheat.
Has anyone found casein or gluten avoidance to slow the progression?

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1 reply
Mentor
Patty, Volunteer Mentor | @pmm | Sep 12 9:57am
In reply to @8positive "I have been doing pescatarian and trying as much as possible to avoid inflammatory foods like..." + (show)
@8positive

I have been doing pescatarian and trying as much as possible to avoid inflammatory foods like tomato eggplant although sometimes have potatoes.
What I haven’t done is avoid milk and wheat.
Has anyone found casein or gluten avoidance to slow the progression?

Jump to this post

@8positive
I have celiac disease, so of course I’m not eating gluten. My numbers have stayed pretty stable. I haven’t voluntarily ingested gluten in a decade or more, so I don’t have any control data that supports that a gluten-free diet has a lower rate of progression.
I suspect a lot of it has to do with coexisting conditions and other variables that make it hard to generalize the impact of something like diet. The Level of compliance is another variable. My spouse will say that he’s been on a gluten-free diet as long as I have because we just don’t keep gluten products in the house. I suspect, however, that he makes a run for the closest donut shop whenever I am not in tow. 😂. I can hardly blame him!

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1 reply
8positive | @8positive | Sep 14 1:09pm
In reply to @pmm "@8positive I have celiac disease, so of course I’m not eating gluten. My numbers have stayed..." + (show)
@pmm

@8positive
I have celiac disease, so of course I’m not eating gluten. My numbers have stayed pretty stable. I haven’t voluntarily ingested gluten in a decade or more, so I don’t have any control data that supports that a gluten-free diet has a lower rate of progression.
I suspect a lot of it has to do with coexisting conditions and other variables that make it hard to generalize the impact of something like diet. The Level of compliance is another variable. My spouse will say that he’s been on a gluten-free diet as long as I have because we just don’t keep gluten products in the house. I suspect, however, that he makes a run for the closest donut shop whenever I am not in tow. 😂. I can hardly blame him!

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I made rice biscuits just three ingredients 3 cups rice flour 3 cups potato starch 1/4 cup sugar ( I know it’s bad but without sugar my hubby won’t eat them) 1/8 tsp baking soda 1 cup olive oil 1 cup boiled water 1 cup cool water mix and drop spoonfuls on cookie sheet bake 350F for 20 minutes

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1 reply
Mentor
Patty, Volunteer Mentor | @pmm | Sep 14 1:28pm
In reply to @8positive "I made rice biscuits just three ingredients 3 cups rice flour 3 cups potato starch 1/4..." + (show)
@8positive

I made rice biscuits just three ingredients 3 cups rice flour 3 cups potato starch 1/4 cup sugar ( I know it’s bad but without sugar my hubby won’t eat them) 1/8 tsp baking soda 1 cup olive oil 1 cup boiled water 1 cup cool water mix and drop spoonfuls on cookie sheet bake 350F for 20 minutes

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It’s amazing how they have improved GF flour as well over the past few years. The 1:1 flour is incredible.
Thanks for your recipe!
Patty

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