Does anyone else have MGUS?

Posted by mjlandin @mjlandin, Jun 4, 2022

I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?

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@leslie2121

Hi!
Yes I’m aware and have discussed with my doctor. He was fairly dismissive but I wanted to try it anyway. I don’t have bleeding issues or on blood thinners and my liver tests are excellent.
Agree it may not be appropriate for everyone but for those who can try it, I wanted to share my experience. 😌

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Mine was dismissive as well when I brought it up. I’m older than dirt though and on a “delightful” mix of medications, so I’m not a good candidate.
I’m so glad you are having good outcomes. Let us know how you are doing.
Patty

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I have had lambda light chain MGUS for 5 years. It has remained stable (fluctuating in a range but not steadily escalating). It is more common in people with connective tissue disease, which i have (lupus and rheumatoid arthritis). The sequela I have experienced related to MGUS is peripheral neuropathy which causes numbness, tingling and sometimes pain in the extremities, distal lower usually more than upper. This can progress to other problems so be sure to watch for numbness in your toes, feet and report to your physician, possibly see a neurologist, and control all other treatable causes of peripheral neuropathy. As for the MGUS itself, monitoring via blood tests is all that needs done, as it causes no symptoms and there is no treatment needed.

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@pmm

Hi Leslie @leslie2121 several of our community are taking turmeric and are happy with the outcome. Speak with your physician about any counter indication and dosage if you haven’t already. While it has great antioxidant and anti-inflammatory properties, it can interact and interferes with certain medications.
Worth the discussion.
Have a great weekend
Patty

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Not Tumeric. Curcumin, which is an extract from Tumeric. There is a huge difference.

Tumeric is not bioavailable and extremely hard for our bodies to absorb. Curcumin has been formulated for ease of absorption. Look for Curcumin with 95% Curcuminoids on the label. Take with Omega fatty acids for even better absorption.

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I take Thorne (formerly Meriva) which is well absorbed and studied. I’m sure other brands are also good. What do you take? Have you had good results? Thanks. 😃

I’ve thought about adding an Omega supplement. Which do you like?

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Tumeric only contains a few percentage of curcumin. Good to see if tumeric interferes with any meds before taking it (antiinflammatory, thins the blood...). It is good to take curcumin supplements that contain black pepper. The pepper contains peperine, which increases GI absorption and slows breakdown of the curcumin in the liver, thereby increasing bioavailability. Absorption is also improved by eating curcumin with healthy fats (because fats tend to digest more slowly?). I read that bromelain may help bioavailability, but who knows what works in the lab and if it is effective when eaten. Bromelain is a chemical in pineapple and papaya. I use a lot of tumeric in cooking (even hot chocolate [with pepper]) because I like the taste. I'm a 69 yo female and have had MGUS about 8 years.

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@cheft

Not Tumeric. Curcumin, which is an extract from Tumeric. There is a huge difference.

Tumeric is not bioavailable and extremely hard for our bodies to absorb. Curcumin has been formulated for ease of absorption. Look for Curcumin with 95% Curcuminoids on the label. Take with Omega fatty acids for even better absorption.

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Hi ChefT,
Wondering if you are still taking the Qunol form of Turmeric or have switched to Curcumin? About six months ago I reached out to the Qunol folks asking if they would provide a certificate of analysis to make sure this product was free of heavy metals etc and never got anywhere with them.
Thank you!

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@1oldsoul

Hi ChefT,
Wondering if you are still taking the Qunol form of Turmeric or have switched to Curcumin? About six months ago I reached out to the Qunol folks asking if they would provide a certificate of analysis to make sure this product was free of heavy metals etc and never got anywhere with them.
Thank you!

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Yes.

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Accidentally found to have monoclonal gammopathy from a biopsy because I was anemic and they couldn’t figure out why. Then I received a diagnosis of lupus about the same time explaining the anemia. I wasn’t aware the two could be related. What is your understanding? How does curcumin help?

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Curcumin (used with black pepper [peperine]) is a strong antioxidant/tumor suppressant compound within tumeric. Those of us with MGUS take it to slow (hopefully) the progression to SMM or MM due to deranged (precancerous) plasma cell growth. It works in the lab but there insufficient research to know if it works in us. The below cancer.gov pub on curcumin/MGUS did not have a statistically significant decrease in free light chain molecules (deranged), but it was only a 3 month study with 36 people. Meh. The second link had better results for controlling MGUS. There are a number of peer-reviewed articles on MGUS in ResearchGate, that are mostly written to other scientists. I'm a retired research scientist (chem, not med.). The online expansion of research papers occurred during the Obama administration because research funded by the public should be more available. If you search, "MGUS curcumin" is a good place to start. Check with your doctor/phamacist before taking tumeric/curcumin in case it interferes with meds, blood thinners, etc. Peperine may increase intestinal permeability (a negative issue for those of us with celiac or other GI problems). Best to take with slow-digesting meals. Whew, information overload.
https://www.cancer.gov/about-cancer/treatment/cam/hp/curcumin-pdq
https://aacrjournals.org/clincancerres/article/15/18/5917/74421/The-Potential-Role-of-Curcumin-in-Patients-with
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6429287/#:~:text=The%20main%20mechanisms%20of%20action,cellular%20signaling%20pathways%20%5B10%5D.

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I was diagnosed with MGUS 5 years ago as my IgE was 90,000....the only patient my oncologist has ever had with these crazy numbers. Am doing fine....78 yrs old, female....and being checked once per year. Cannot understand why I continue to receive such elevated IgE numbers. Any ideas?

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