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Does anyone else have MGUS?

Blood Cancers & Disorders | Last Active: Sep 19 12:31pm | Replies (818)

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@gingerw

@mguspixi25 You're absolutely right. There is research that indicates most people do not progress further, but there is no concrete reasons why some do.

In my own personal case, I have "low risk" kappa light chain multiple myeloma, meaning the genetic factors were not present to place me in high risk category. And, unlike most people, I was diagnosed with MGUS in 2017, smoldering multiple myeloma in 2018, and multiple myeloma in 2019. That is not very common. As I am wont to say, I am an overachiever in life, so why wouldn't I be in this situation, also? It is my belief that living and dealing with multiple autoimmune conditions for decades was a factor in the rapid progression.
Ginger

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Replies to "@mguspixi25 You're absolutely right. There is research that indicates most people do not progress further, but..."

Yes, and unfortunately there isn’t an accurate (enough for me to rely on anyway) tool to calculate that change, which includes variables like what you’ve described.
I have none of the characteristics and yet I’m high risk MGRS (high risk of conversion to SMM) when taking into account only the current changes - otherwise I was intermediate-high, which still doesn’t have the rate of change/progression that I’m seeing.
Well, I hope you don’t ‘overachieve’ any more regarding MM Ginger, because you’re well needed by many for your upbeat approach and uplifting perspective 🌺

I was told by my doctor that the disease WILL progress in everyone at some point, unless they die of something else before the MGUS progresses to smoldering or MM. He says it could be 15 - 20 years from the first MGUS diagnosis until it progresses, but it will progress. I am relatively young for the MGUS diagnosis, as my doctor told me that most people are diagnosed in their 70's and I am in my 50's. He does my bloodwork every 3 months and my next appointment is about 3 weeks away. I'm curious as to what he will say this time, and I've recently been diagnosed as also having Addison's disease. Just some info...