Is there anything to help stop or slow progression of MGUS?

Posted by amyboylan1 @amyboylan1, Oct 12, 2024

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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Profile picture for dcuste @dcuste

Well I gave up on taking high doses of Curcumin and now am betting that lowering my BMI is my best bet. I've had IgM Lambda MGUS for about four years. The progression started slow but quickly picked up speed. Last November, I started using high doses of Curcumin and at the same time was using a CGM to help monitor glucose. The results was a had a better diet, lost weight and my labs showed my MGUS stopped getting worse. After that I kept taking high doses of curcumin but of vacations I was eating out and not controlling my diet or monitoring my glucose. I just got my most resent Labs back and they are not good at all. I may even be in WM range. I'll know after I get a BMB this weekend and see my Hemo/Oncologists after the BMB results are back. I'm now thinking the only reason my March labs did not show progression was do to my better diet. My plain now is to get my BMI under 25 as shown in this study.... https://pubmed.ncbi.nlm.nih.gov/35440099/
If this doesn't work, I'll probably being treated for WM at the end of 2025.

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@dcuste
Good morning. Please keep us updated with your BMB results. I have also had IGM Lambda for 4 years and although my light chains, CBC and complete metabolic panel are normal, my IGM continues to climb 100 points a year and is now in the 700+ range. Just had a viscosity blood test last Monday (checking paraproteinanemia) and it was also normal. My most recent IGG was normal but IGA and IGG have been low since diagnosis. The hematologist didn’t seemed very concerned a year ago and said my numbers were much better than most of his patients. When I mentioned last Monday that his other patients had IGM in the thousands, he said “yes, and that’s when it’s scary” Unfortunately I am unable to tolerate high doses of Qunol Turmeric/Curcumin. I get very weak and tired and the only thing I can think of is I am borderline anemic and it is blocking absorption of iron, even taking it away from an iron supplement. We are in the process of moving to the Corpus Christi area in Texas to be closer to family and when I get settled I am going to find a naturopathic oncologist and see what can be tried.

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Profile picture for amberl99 @amberl99

I spoke to my myeloma specialist last week and asked her specifically about Tumeric. She said it might help, but there’s nothing conclusive yet. So I’m taking it. Can’t hurt, even the doc agreed.

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@amberl99 That’s the exact response of my hem/onc doc when I asked him.
My numbers went down for a year and a half, then I had major surgery and a subsequent fall. Numbers went up. I am about to go back in a few weeks. Hopefully it was just surgery, fall trauma.
I hope your experiment is successful. Do you mind letting me know?

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H what was your father in law treated with? How many treatments and sany serious side effects?

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Well I gave up on taking high doses of Curcumin and now am betting that lowering my BMI is my best bet. I've had IgM Lambda MGUS for about four years. The progression started slow but quickly picked up speed. Last November, I started using high doses of Curcumin and at the same time was using a CGM to help monitor glucose. The results was a had a better diet, lost weight and my labs showed my MGUS stopped getting worse. After that I kept taking high doses of curcumin but of vacations I was eating out and not controlling my diet or monitoring my glucose. I just got my most resent Labs back and they are not good at all. I may even be in WM range. I'll know after I get a BMB this weekend and see my Hemo/Oncologists after the BMB results are back. I'm now thinking the only reason my March labs did not show progression was do to my better diet. My plain now is to get my BMI under 25 as shown in this study.... https://pubmed.ncbi.nlm.nih.gov/35440099/
If this doesn't work, I'll probably being treated for WM at the end of 2025.

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I am a 75 year old male who was diagnosed 25 years ago with mGus. Life went on as usual for me aside from regular blood tests, etc. while being closely monitored every 3 months. April of 2023, I was diagnosed with a Non-Hodgkin Lymphoma, specifically an IgG-secreting Lymphoplasmacytic Lymphoma (LPL). I commenced chemotherapy of Bendamustine & Rituximab May 2023 and was scheduled for 6 cycles. However, my cycle 6 was cancelled by my oncologist who informed me that chemo had been very ineffective on me with the level of my IgG paraprotein actually stagnating and plateauing at a level much lower than expected. November 2023, I began taking a BTK Inhibitor called Zanubrutinib (I take 4-80mg capsules every morning). After taking Zanubrutinib for 18+ months, my cancer is stable.

Both my oncologist and cancer pharmacist told me there were some substances that I needed to avoid while undergoing treatment (be it chemo or a BTK Inhibitor). Among numerous other things, I was strictly told to avoid were grapefruit, seville oranges, and tumeric as they negatively interact with the cancer treatment.

When thinking of starting any new medications and/or supplements, I routinely check with my cancer pharmacist to see if there are any negative interactions with any of my currently-approved medications. I'd rather be safe than sorry!

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Profile picture for circawdm @circawdm

I take a turmeric/curcumin supplement made by a top, long-trusted vitamin and supplement company. I am meticulous in reading the label regarding sources, and what is and is NOT in the capsule. I take a medium dose, and it has shown to be very effective for me in my blood tests and in alleviating my symptoms when combined with other anti-inflammatory supplements, such as extra-virgin olive oil (EVOO), garlic, ginger, vitamin D3, and Omega-3 fish oil.

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specifically what dose of what? Curcumin? Tumeric?

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Profile picture for amberl99 @amberl99

I spoke to my myeloma specialist last week and asked her specifically about Tumeric. She said it might help, but there’s nothing conclusive yet. So I’m taking it. Can’t hurt, even the doc agreed.

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I posted this comment to another thread. https://connect.mayoclinic.org/comment/1311231/
There were replies that exposed the weakness of the studies. I'm still taking Curcumin C3 complex, but will reevaluate after the next labs.

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I spoke to my myeloma specialist last week and asked her specifically about Tumeric. She said it might help, but there’s nothing conclusive yet. So I’m taking it. Can’t hurt, even the doc agreed.

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Profile picture for katrinarn24 @katrinarn24

Hello,
What type of turmeric do you take? It's hard to find what is reliable with supplements since they are not FDA regulated.

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@katrinarn24, I added Qunol Turmeric Curcumin Supplement @ 1000mg, twice daily to my regimen after first talking to my PCP, hem/onc doc, a Pharm.D and Connect members. Several MGUS discussion members recommended the Qunol brand. @circawdm is quite correct in saying that supplements are unregulated so we all have to do our own research. I have had no stomach issues.
After taking this supplement twice daily for about 1.5 years, my “numbers have stabilized to almost exactly what they were when I was first diagnosed. They had been climbing gradually.
I have type two diabetes as a coexisting condition as well as celiac disease, so I wanted to make sure that any supplements I add to my medication list are not going to cancel out the benefits of my prescription medications. Fortunately, there is a.Pharm.D attached to my PCP‘s practice so she called me with a list of my prescriptions and we went through them. She checked them all quite methodically.
My hem/onc guy has been quite dismissive about what I consider to be something to celebrate. He is a consummate empiricist (thankfully!). He will not recommend anything that he believes has not been thoroughly researched and validated. He is very cautiously optimistic about the benefits of curcumin, but is not ready to jump on that bandwagon. So my success so far is, in fact, pretty anecdotal, but I’ll take it!
Advocate for yourself as a patient. They are the experts, and I don’t dismiss anything that my doctors are telling me, but if something outside of the traditional approach may be beneficial, I will need to know what harm will there be in trying? Hearing none I will likely go forward.
Will you let me know how this goes for you?

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I take a turmeric/curcumin supplement made by a top, long-trusted vitamin and supplement company. I am meticulous in reading the label regarding sources, and what is and is NOT in the capsule. I take a medium dose, and it has shown to be very effective for me in my blood tests and in alleviating my symptoms when combined with other anti-inflammatory supplements, such as extra-virgin olive oil (EVOO), garlic, ginger, vitamin D3, and Omega-3 fish oil.

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