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Is there anything to help stop or slow progression of MGUS?
Blood Cancers & Disorders | Last Active: 1 day ago | Replies (115)Comment receiving replies
@loribmt
@gingerw
Lori and Ginger, I am hoping you have some insights after reading your very helpful thread on Second Opinions. Any thoughts on how I can find out what the standards are (IGM numbers) when it comes to when bone biopsies and full body scans become necessary? I would like to see if I can get a second opinion but is it going to offend my Hematologist?
Replies to "@loribmt @gingerw Lori and Ginger, I am hoping you have some insights after reading your very..."
Here are some links regarding further testing. I had
a baseline bone marrow biopsy (BMB) 8 years ago when first diagnosed (I wanted to know my starting point). Normal marrow has around 2-3% plasma cells and that showed 5%. I had a BMB this summer because my kappa is now 300 and my kappa/lambda is 29. It showed +15% plasma cells, which should be in the SMM range but my oncologist said still MGUS due to other test results. The genetic test showed 1q21 gain, a genetic mutation that ~40% of MM patients have and that impacts treatment (good [?] to know upfront even if I don't get MM). I like knowing my status, even if the news isn't all that good. I have IgA kappa MGUS.
https://pmc.ncbi.nlm.nih.gov/articles/PMC7203099/ https://pmc.ncbi.nlm.nih.gov/articles/PMC3319353/https://pmc.ncbi.nlm.nih.gov/articles/PMC9425303/
@1oldsoul @loribmt has given you some great information already, as have others.
To address your thoughts about a second opinion. You are certainly within your rights if that is a direction you want to pursue! A caveat here is to check with your insurance company to determine they will cover a second opinion! Hopefully your oncologist does not have an attitude about a patient wanting to be sure and feel comfortable about the way their case is handled. Knowledge is power, and helps you make the best joint decision about your health.
Ginger
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Hi @1oldsoul, I read through a few of your earlier posts just so I could get a better understanding. You were diagnosed with MGUS a couple of years ago and your doctor suggested just to watch and wait. Which is very standard practice. For some patients, they never progress beyond the surveillance stage.
It looks as though followup blood results are showing a small upward trend in some of your numbers. It seems like our doctor is being thorough and recommending a few more tests run to see if there are any changes in your bone marrow and its ability to produce healthy blood cells. This would be helpful if there has been any possible progression to MM and as a baseline for future results for comparison.
What is your hesitation with having the tests run?