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.

@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.

Jump to this post

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.

REPLY
@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.

Jump to this post

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.

REPLY
@circawdm

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.

Jump to this post

Which doctor did you see at Mayo? I am not familiar with a fat pad biopsy being used. I have SMM and have had 2 PET scans, three Bone Marrow Biopsies and periodic blood tests to monitor my nmubers.

REPLY
@carolee888

Which doctor did you see at Mayo? I am not familiar with a fat pad biopsy being used. I have SMM and have had 2 PET scans, three Bone Marrow Biopsies and periodic blood tests to monitor my nmubers.

Jump to this post

Hi – I had a tele-visit (45 minutes) with Dr. David Dongli at Mayo Clinic. His credentials are impressive.

"Fat Pad Biopsy" is used to detect/rule out amyloidosis. A few very small pieces of adipose tissue (fat) are taken using an aspiration needle usually from below the navel area usually. Simple test, local lidocaine injection. About a 10 minute procedure.
https://www.mayoclinic.org/biographies/dingli-david-m-d-ph-d/bio-20055171

REPLY

Hi,

Thank you for your postings. I also have MGUS (M-spike protein 0.4) and neuropathy in my feet. I have not have a full hematological workup but will soon. Would you mind sharing information on the diet and supplements that the MM survivor recommended?

REPLY
@circawdm

Hi – I had a tele-visit (45 minutes) with Dr. David Dongli at Mayo Clinic. His credentials are impressive.

"Fat Pad Biopsy" is used to detect/rule out amyloidosis. A few very small pieces of adipose tissue (fat) are taken using an aspiration needle usually from below the navel area usually. Simple test, local lidocaine injection. About a 10 minute procedure.
https://www.mayoclinic.org/biographies/dingli-david-m-d-ph-d/bio-20055171

Jump to this post

I researched and found out the purpose. My hemo/onc had my gastroenterologist do a biopsy for Amyloidosis when I had my last colonoscopy. Negative but years ago, I think I need to be tested again. I have severe anemia and that is one of the symptoms. Also, there is a chain of it in my family ancestors in Ireland. I could find out if I carry the gene but have not paid fof the health part of the genetic test that I took. I would not ordinarly connect it but my family came from the same small Irish town! I am glad that your doctor at Mayo proposed the test!

REPLY
@carolee888

Which doctor did you see at Mayo? I am not familiar with a fat pad biopsy being used. I have SMM and have had 2 PET scans, three Bone Marrow Biopsies and periodic blood tests to monitor my nmubers.

Jump to this post

Fat pad biopsies may be done to look for Amyloidosis – not very definitive or accurate

REPLY
@deborahjb

Hi,

Thank you for your postings. I also have MGUS (M-spike protein 0.4) and neuropathy in my feet. I have not have a full hematological workup but will soon. Would you mind sharing information on the diet and supplements that the MM survivor recommended?

Jump to this post

I would truly appreciate any information on diet and supplements and how they can relate to MGUS.

REPLY
@jam5

Fat pad biopsies may be done to look for Amyloidosis – not very definitive or accurate

Jump to this post

I am not aware of any more accurate tests for Amyloidosis. Do you? I have had fat pad once to rule out Amyloidosis.

REPLY
@ea1

I am not aware of any more accurate tests for Amyloidosis. Do you? I have had fat pad once to rule out Amyloidosis.

Jump to this post

Pyrophosphate scans , history and labs with a doctor knowledgeable about the different forms of Amyloidosis

REPLY
Please sign in or register to post a reply.