Is there anything to help stop or slow progression of MGUS?
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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I am 70 and my MGUS started 8 years ago. There is a lot of research now on designer proteins that can lock onto the nasty-bits mutated cells in the bone marrow and stop replication, but those are generally just used in late-stage SMM (smoldering multiple myeloma) or MM. They are not used in MGUS due to side effects, and for most people with MGUS, it doesn't progress to SMM or MM. So, the longer one can go with just MGUS the closer to better treatments. ResearchGate has a lot of good peer-reviewed papers on MGUS, SMM, and MM. A lot of the slowing progression is the same with all syndromes and diseases, take care of yourself, exercise, manage stress, and healthy diet. Keep a food journal in case you have any food intolerances that might cause inflammation or other issues. Some people take bioavailable curcumin. Curcumin is in turmeric root and has been found to decrease TNF (tumor necrosis factor) in high doses (higher than just adding turmeric to stuff). Curcumin is poorly absorbed by the GI tract so supplements\ with peperine (from black pepper) or lipids (fats) and eaten with food help. There are a lot of brands, just make sure it is bioavailable rather than just curcumin or turmeric. I take about a gram/day of curcumin but most of the research is on 4-7 gm/day. It can cause side effects for some and does thin the blood a bit, so check with a doctor before ramping up.
Thank you so much. Could you tell me the name of the tumeric you use please. I just have regular tumeric capsules from Costco
Just saw my Oncologist on Friday, October 4th, my blood work looked good. I am 67-year-old male. My M-protein spike has been consistently between .5 and .7 for 18 months, it was .6 at this visit. My free Kapa light chains has been high, progressed from 37.6 in May of 2023 to 45.0 this visit. My Oncologist moved me from every 6 months follow-up to nine months, which was encouraging. The best thing you can do with MGUS is just to have it monitored. With a 1% per year progression rate, I feel my odds are good.
That sounds encouraging. Do you do anything special like supplements, etc.
No supplements specifically related to MGUS, I do regularly take Magnesium, B-Complex, C and D3 for general health and other unrelated health issues. My Oncologist does not believe my other health issues have anything to do with MGUS and has not recommended any supplements or prescribed drugs.
Initially when I was referred to an Oncologist for the M-Protein Spike I was very concerned, but his initial extensive blood work, Pet Scan, Bone Marrow Biopsy and 24-hour urine test put me at ease. I do not tend to even think about it too much anymore. Just stay positive, take care.
Thanks. I also have a ratio with my light chains and an elevated kappa cell score
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.
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.
Thank you so much.
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.