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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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dcuste | @dcuste | Aug 20 5:08pm
In reply to @dcuste "Thanks for the tip @natelew Not having pain or tingling YET, but will keep it in..." + (show)
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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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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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dcuste | @dcuste | Aug 20 6:18pm

FWIW this is results from my BMB. Let me know if this is pretty standard or not.
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amyboylan1 | @amyboylan1 | Oct 19 11:26pm
In reply to @amyboylan1 "Thanks. I also have a ratio with my light chains and an elevated kappa cell score" + (show)
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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