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

specifically what dose of what? Curcumin? Tumeric?

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!

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.

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

@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?

@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.

DanaFarber has been conducting clinical trials using plant based diets. There are also MGUS clinical trials using Metaformin.
Thirdly, a normal BMI has been shown to be protective.
I was first diagnosed with MGUS in 2002 - 23 years ago. It has largely been stable except after major surgeries. My MGUS showed up
after surgery for a ruptured appendix and sepsis - was in the hospital for 2 weeks. I also had four joint replacement surgeries after which my free light chains increased. Three were under regional anesthesia and the last (a shoulder) had to be under general anesthesia.
I tried Metformin but could not tolerate it. If you go that route, I suggest using the extended release version. I heard about that belatedly but am now actually terrified of the drug.

Good morning 1oldsoul. I expect my BMB results will come out very soon. I'll let you know. The big difference between us is my M-spike & IgM are 3X higher than yours. Last November, I got serious and watched my diet closely and took massive amounts of Curcumin. My March labs showed the progression had slowed by 7X. I then went on a two week cruise that unexpectedly turned into 5 weeks. I ran out of meds & stopped taking the Curcumin. My latest labs are terrible.
Based on a study, I'm now trying to lose weight below 2.5 BMI in addition to all other strategies of Curcumin and keeping my glucose levels low. I now only eat twice a day at 10am and 5pm. There is a study for a plant based diet. I may also go there.
BTW, this was my first BMB and I was a little nervous. I didn't have a driver so I elected to just having a local. She took four tubes of marrow and a chunk of bone. I only felt slight pressure.
My biggest concern now is another cruise in two weeks that was booked months ago.

Not sure if this would help but if you can get in a pool it sure does help with pain and tingling.

Thanks for the tip @natelew Not having pain or tingling YET, but will keep it in mind. I did use a very cold pool dip to numb a real bad case of poison ivy once.
A month ago I asked for all the tests be done to fill out the awmrisk.com calculator. I had all the tests done and adjusted the results for lab reference differences. The only piece of the puzzle still missing is the bone marrow %. Today, I was told the results are in but they aren't going to show them to me until tomorrow when a Hematology/Oncology Dr will discuss them with me. This has me very puzzled as I have had many labs done over the 50 years I have been with this medical insurance company and they have never withheld any results like this before. I'll post here when I know more.