What’s the science on diet and MGUS/SMM?

Posted by pmm @pmm, Sep 19 8:33am

Is there any evidence that progression of MGUS or SMM is slowed by dietary changes? Avoidance of types of food? Addition of specific spices to the diet?

Interested in more discussions like this? Go to the Blood Cancers & Disorders group.

There was a lively discussion of Curcumin on FB which made me curious.

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Since I have so many things wrong with my body, some rare, some very rare, I do a lot of research on this subject. So I can verify the answer to your question and it is yes but complicated. Since I have two very serious problems with my blood and heart, plus my kidneys, immune system, peripheral neuropathy and brain, I researched using this simple question. Is this good or bad for my (specify condition) including cancer and my Kappa light chain IgM MGUS that’s slowly progressing to either MM, NHL or WM. Example: Is potassium good or bad for my Stage 3 CKD. Answer: Bad

When I focused on my MGUS, I asked are tomatoes good or bad for my MGUS progressing to cancer? The answer was Bad. Why I asked? It seems certain cancers cells love an acidic blood level and cause them to multiple easier. Then came this answer, an acidic blood level can repress breast cancer cells from multiplying rapidly. This answer was noted from a survey on the topic. I’m unsure of what cancer it mentioned but I believe it was breast cancer and it was reported from a study and not a definite fact. So yes, according to that question and answer, certain things can be good or bad depending on the type of cancer. I asked about foods, drinks, vitamins, vegetables, fruits. On the topic of one food, it was good for one condition but bad for another condition. So I chose to eat it since it helped my one condition that was more dangerous to me and I’m paying the price from the other condition. So I hope this answers your question. But remember this, how much help or damage something will do to your body is subjective at best. @becky1024

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@pmm

There was a lively discussion of Curcumin on FB which made me curious.

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Hello, like everything else in the world of food & supplements, the answer is maybe. I think, from reading your posts, that you are doing a lot of research, so you know that the information is "all over the board" and hard data is difficult to find. One of the problems, when it comes to studies of slowing/preventing progression. is that research grants are usually for a couple of years – that doesn't always give us the long term data we need to draw conclusions.

For myself, I try to avoid Facebook discussions, except maybe on closed, monitored groups when it comes to my health. Too much opinion & speculation (positive & negative) and not enough facts. Also too many people selling their book/supplement/cure…with or without proof.

All that said, there is some evidence-based material on curcumin possibly being helpful, I found a couple of small research studies. I will provide the links & let you dive in.
https://www.myelomacrowd.org/myeloma/community/articles/curcumin-gets-positive-results-small-mgus-smoldering-study
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3445886/
And the good news is, there is at least one clinical study underway:
https://clinicaltrials.gov/ct2/show/NCT04731844
Sue

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Thank you, Sue. You are correct in your characterization that I am a reader. I find the information about this is certainly all over the place. I have this on my list to discuss with my hem/onc doc in October when I next go in.
The dominoes can certainly fall precariously when one makes changes like adding supplements. I always err to the side of caution.
I agree about the FB groups. So much bad information. When one particularly insistent individual pontificated at length with great authority, he was asked if he is a physician. He replied that he is not, but has “studied medicine” all his life. 🙄
I am just a fly on the wall. I will always consult my provider. I do like to be as informed as possible so I don’t waste either of our time.
You provided good information. Thanks.

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@pmm

Thank you, Sue. You are correct in your characterization that I am a reader. I find the information about this is certainly all over the place. I have this on my list to discuss with my hem/onc doc in October when I next go in.
The dominoes can certainly fall precariously when one makes changes like adding supplements. I always err to the side of caution.
I agree about the FB groups. So much bad information. When one particularly insistent individual pontificated at length with great authority, he was asked if he is a physician. He replied that he is not, but has “studied medicine” all his life. 🙄
I am just a fly on the wall. I will always consult my provider. I do like to be as informed as possible so I don’t waste either of our time.
You provided good information. Thanks.

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You said, "He replied that he is not, but has “studied medicine” all his life. 🙄" My kids say "He got his degree at Google U"

If you want to dive into a really deep ocean of more scientific information, you can try searching at google.scholar.com Here is an example of what I found by using the words MGUS and curcumin:
https://journals.sagepub.com/doi/full/10.1177/1534735415622013
Sue

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Thanks for the IGM Kappa MGUS discussion. In response, here is an assortment of thoughts. Regarding Curcumin, careful because it is a blood thinner. I met a legally blind woman in my Opthamologist’s office who had bleeding inside her eye. She had been taking six Curcumin daily. She was ordered to stop! I do not take it because I’m talking a daily baby aspirin.

Regarding which sources to trust: I do not do any social networking, rather contact friends directly via email. On Google, PubMed and NIH are more reliable.

Regarding diet, for OSTEO arthritis it is best to avoid the nightshade family: tomatoes, potatoes, eggplant and peppers. I also avoid things containing sugar or other sweeteners because they are inflammatory. My usually painless bone-on-bone knees confirm these ideas. Feedback comes within a day or so.

Wishing everyone well!

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@sueinmn

You said, "He replied that he is not, but has “studied medicine” all his life. 🙄" My kids say "He got his degree at Google U"

If you want to dive into a really deep ocean of more scientific information, you can try searching at google.scholar.com Here is an example of what I found by using the words MGUS and curcumin:
https://journals.sagepub.com/doi/full/10.1177/1534735415622013
Sue

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Thank you! I will check that out.

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@raye

Thanks for the IGM Kappa MGUS discussion. In response, here is an assortment of thoughts. Regarding Curcumin, careful because it is a blood thinner. I met a legally blind woman in my Opthamologist’s office who had bleeding inside her eye. She had been taking six Curcumin daily. She was ordered to stop! I do not take it because I’m talking a daily baby aspirin.

Regarding which sources to trust: I do not do any social networking, rather contact friends directly via email. On Google, PubMed and NIH are more reliable.

Regarding diet, for OSTEO arthritis it is best to avoid the nightshade family: tomatoes, potatoes, eggplant and peppers. I also avoid things containing sugar or other sweeteners because they are inflammatory. My usually painless bone-on-bone knees confirm these ideas. Feedback comes within a day or so.

Wishing everyone well!

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Thank you, Ginger. Your affirmative responses are always appreciated! Ginger is my favorite tea.

Wishing you everything good.

Gail

Gail Reynolds Natzler

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@pmm

Thank you, Sue. You are correct in your characterization that I am a reader. I find the information about this is certainly all over the place. I have this on my list to discuss with my hem/onc doc in October when I next go in.
The dominoes can certainly fall precariously when one makes changes like adding supplements. I always err to the side of caution.
I agree about the FB groups. So much bad information. When one particularly insistent individual pontificated at length with great authority, he was asked if he is a physician. He replied that he is not, but has “studied medicine” all his life. 🙄
I am just a fly on the wall. I will always consult my provider. I do like to be as informed as possible so I don’t waste either of our time.
You provided good information. Thanks.

Jump to this post

I like to try to help others, especially if their doctor has given them next to no guidance or information on their condition or test results, even though I do not feel as comfortable as many in interpreting test results. It's so nice to see people doing their own homework at reliable places, which is what I have always done before I ever "pontificate" or comment on a topic, or start any "therapy" or diet myself. When it comes to diet and supplements, each person should make their own decisions based on their body and their diagnosis and risk level. I am a strong advocate of consulting with specialists before changing what you eat or ingest as supplements if you have any kind of active disease. That is why I spoke with my MGUS/MM expert at Mayo Clinic yesterday for 45 minutes. For me anyhow, he felt my diet and supplements were fine and could not hurt – and might help.

As with everything else, we all have free choice to do as we wish as far as diet, weight control, smoking, alcohol intake, and many other things, including who we trust as our doctor. Some people listen to their neighbors or random people online to make very serious decisions or judgments. I am not one of those people. I have three doctors who know me and my health quite well whom I trust. I always ask their opinions before changing anything in my diet or lifestyle that might affect what has now become a much more serious diagnosis and future. When I post articles/videos on social media they are always from men and women or organizations (National Cancer Society for example), who are very well respected experts in their fields. Again, the viewer/reader can believe what they say or suggest or not.

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@circawdm

I like to try to help others, especially if their doctor has given them next to no guidance or information on their condition or test results, even though I do not feel as comfortable as many in interpreting test results. It's so nice to see people doing their own homework at reliable places, which is what I have always done before I ever "pontificate" or comment on a topic, or start any "therapy" or diet myself. When it comes to diet and supplements, each person should make their own decisions based on their body and their diagnosis and risk level. I am a strong advocate of consulting with specialists before changing what you eat or ingest as supplements if you have any kind of active disease. That is why I spoke with my MGUS/MM expert at Mayo Clinic yesterday for 45 minutes. For me anyhow, he felt my diet and supplements were fine and could not hurt – and might help.

As with everything else, we all have free choice to do as we wish as far as diet, weight control, smoking, alcohol intake, and many other things, including who we trust as our doctor. Some people listen to their neighbors or random people online to make very serious decisions or judgments. I am not one of those people. I have three doctors who know me and my health quite well whom I trust. I always ask their opinions before changing anything in my diet or lifestyle that might affect what has now become a much more serious diagnosis and future. When I post articles/videos on social media they are always from men and women or organizations (National Cancer Society for example), who are very well respected experts in their fields. Again, the viewer/reader can believe what they say or suggest or not.

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Excellent personal guidelines to follow when evaluating medical information, especially online, and before posting information online on social networks, @circawdm.

Do you have multiple myeloma? I'd like to learn a bit more about your journey.

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@colleenyoung

Excellent personal guidelines to follow when evaluating medical information, especially online, and before posting information online on social networks, @circawdm.

Do you have multiple myeloma? I'd like to learn a bit more about your journey.

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My journey began with a mother who had very rare autoimmune disorders, diabetes, etc. She died at an early age and was very miserable for the last 15 years of her life. Given, that was in the late 80s and they did not know nearly as much as they do now, for the most part, her illnesses have not advanced much from what I read by way of treatments. She trusted Mayo Clinic and went there 2-3 x a year with my father as her support system. Having a support system (which I do not now) is so helpful.

I started 10+ years ago with peripheral neuropathy symptoms in my feet. All the doctors I saw attributed it to my very flat feet and to my very low spinal disc herniation and early degenerative disc disease, pressing on nerves. A few tests were run to rule out 3-4 obvious auto-immune diseases, but none would have shown MGUS. CBCs and CMP were always pretty much normal. Ditto ANA and CRP tests were done.

It wasn't until I consulted a physiatrist about my feet symptoms and he decided to run some extensive blood tests on top of the EMG and NCS (both normal) that we saw an IgM paraprotein in my blood and he then sent me on to the large cancer center here. More tests and a BMB confirmed low-risk MGUS. I met and had a long interview via email and by phone with a MM survivor who had it pretty badly and has been in remission using supplements and a very strict diet for 25 years now. He made some suggestions, many of which I have adopted, especially the diet. He has an MM/MGUS group online also.

I also decided to contact a very well-respected MGUS/MM specialist at Mayo for a phone consult and to review all of my medical histories for the past 6-8 years. He said more is going on but is puzzling to him because all I have going on clinically is the PR and paraprotein basically. I will go for a battery of more tests next week locally. Depending on what they say, I will probably have a "fat pad biopsy" done sometime after those results come back.

So, without getting into a longer, boring story, that is my journey as it relates to MM/MGUS and related things.

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