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

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

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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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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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Possibly, there is a study (if it has not been discontinued with NIH funding issues) led by Dana Farber I think, looking at nutritional management. The idea is that certain diets might show some substantial benefit in managing progression. I believe they are focused on plant based diets. I had a long talk with my hematologist who wanted to know if I was interested in participating but then he moved on to another hospital when research funding at his institution came under threat.

He was not a lead on the study but partipating.

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Profile picture for Thea @theadosi

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

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@theadosi
I am almost the exact same with MGUS 3.5 years ago and now advancing to Smoldering MM. do you plan to participate in any early treatment available through a study? I am considering

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Profile picture for tracypage @tracypage

Possibly, there is a study (if it has not been discontinued with NIH funding issues) led by Dana Farber I think, looking at nutritional management. The idea is that certain diets might show some substantial benefit in managing progression. I believe they are focused on plant based diets. I had a long talk with my hematologist who wanted to know if I was interested in participating but then he moved on to another hospital when research funding at his institution came under threat.

He was not a lead on the study but partipating.

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@tracypage The study was listed under "Spark Cures". SparkCures is a myeloma and MGUS website that lists studies at major centers that are recruiting patients. I believe their goal is to get participation in research studies. Many of the studies do not require that you be in the center "AREA" to participate.
I believe Sloan also did a similar study and I wonder if the results and the foods used would be available. Sloan published the results of their study, which I remember as being positive.

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Profile picture for hsminc @hsminc

@tracypage The study was listed under "Spark Cures". SparkCures is a myeloma and MGUS website that lists studies at major centers that are recruiting patients. I believe their goal is to get participation in research studies. Many of the studies do not require that you be in the center "AREA" to participate.
I believe Sloan also did a similar study and I wonder if the results and the foods used would be available. Sloan published the results of their study, which I remember as being positive.

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It may be the MSK study and I may have been wrong about DF…. it has been 2 years since he mentioned to me? He was very excited about it. He was at Emory and now he’s at Fred Hutchinson. Such a fabulous doctor, we all miss him in Atlanta.

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Profile picture for Kali @madkm

@theadosi
I am almost the exact same with MGUS 3.5 years ago and now advancing to Smoldering MM. do you plan to participate in any early treatment available through a study? I am considering

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@madkm hey there. Sorry, what did you mean almost the same? I’m in Canada and not aware of any studies at the moment. Would be curious to learn more!

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