Is there anything to help stop or slow progression of MGUS?
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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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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1 ReactionFWIW this is results from my BMB. Let me know if this is pretty standard or not.
@amyboylan1
I also have a ratio
@ajbonett hi there! Any updates on your journey??
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2 ReactionsPossibly, 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.
@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
@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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2 Reactions@hsminc Website describing the Sloan study:
https://www.mskcc.org/news/diets-for-mgus-smoldering-myeloma-and-multiple-myeloma-q-with-msk-cancer-and-nutrition-experts
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1 ReactionIt 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.
@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!