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 ajbonett @ajbonett

I was diagnosed with MGUS about 2 1/2 years ago and have now progressed to Smouldering Myeloma. I joined a medical study out of MSK called a nutrivention study. Basically, they are looking to see if they can stop the progression of MGUS and Smouldering Myeloma through using a whole-foods, plant-based diet. I started the diet at the beginning of August and by the end of the month my M-Spike and light-chain ratio had dropped by more than half. I am now almost 3 months in and will have new labs drawn next week. I can't wait to see if they have dropped even further. I have also had a big drop in my inflammation which has helped my energy levels and lost 23+ lbs as of this morning. I feel like a new person. My husband is doing it with me and his cholesterol has dropped from borderline to perfect levels and he has lost 15 lbs.

Starting the diet wasn't as tough as we thought it would be. It's the elimination of dairy that is the hardest for us. But we have done a lot of research, gathered some fun recipes, and look at it as an adventure. We are learning to cook without oils, and we use mostly mushrooms and beans instead of tofu or "vegan meats." I forgot to mention that I limit my "added sugars" to less than 5 grams per day, and some days have no added sugars. Limiting the sugars is very important because cancer often uses them as "food" to grow.

I will also tell you that while my "study hematologist" and endocrinologist were thrilled with my results in such a short time, my regular hematologist was not. Earlier this week was the first time he saw my study results. He actually seemed a bit annoyed that I was going this route and feeling great. He kept asking if I was hurting anywhere and downplayed my test results even though they were there in black in white. I was very disappointed in him not acknowledging that I was doing better without any medical intervention.

So, to answer the question of both you and the OP... YES! There is something you can do. You will need to set your mind to it, but it is so much better than waiting and doing nothing, and then taking harsh drugs in a battle that you could possibly have avoided. I wish you well whatever you choose to do. Feel free to reach out privately if you want more information.

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@ajbonett hi there! Any updates on your journey??

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Profile picture for amyboylan1 @amyboylan1

Thanks. I also have a ratio with my light chains and an elevated kappa cell score

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@amyboylan1
I also have a ratio

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FWIW this is results from my BMB. Let me know if this is pretty standard or not.

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Profile picture for dcuste @dcuste

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.

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So I went to see the overflow Hematologist. He had to get permission from the boss to find out if he could share my BMB with me. He did tell me my infiltration was 20%. I told him my regular Hematologist had agreed that awmrisk.com calculator was probably good because it's put out by Dana-Farber. So he agreed and plugged in the numbers exactly as reported from the lab and pronounced my as medium risk. I pointed out to him the reference values from the lab are different than what the calculator uses and must be adjusted for. The lab even mentioned that in the fine print. He claimed as long as the units are the same reference numbers don't matter. We argued over this and he wouldn't budge nor would he explain why I was wrong. I then asked him what he would do to slow the progression. He mentioned different chemo and monoclonal antibodies but told me he couldn't recommend a treatment because he was just a stand in. I asked if there was any benefits to taking Curcumin or having a lower BMI. He asked if I wanted body parts cut off. I replied no, I want to grow 3" taller. When I got home, I plugged in my higher adjusted numbers and my risk actually went to low. Go figure! I think I have 50% chance of going 9.3 years rather than the 4.8 years he gave me. I then asked him what he would

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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.

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Profile picture for dcuste @dcuste

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.

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

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Profile picture for 1oldsoul @1oldsoul

@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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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.

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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.

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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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