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Does anyone else have MGUS?

Blood Cancers & Disorders | Last Active: 9 hours ago | Replies (923)

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@kayabbott

I've had MGUS for 8 years. I had a BMB this summer and plasma level was 15% and 1q21 gain (chromosome 1, one replication at location 21) which should have me in the SMM range, but doctor says still MGUS. My kappa is almost 300 and kappa/lambda ~28. I'm 70 and still asymptomatic. The 1q21 gain is associated with somewhat higher chance of it turning to MM and less responsive to treatment, but about 40% of people that have MM have 1q21 gain or amplification (tripled rather than doubled). I try to spend my time doing fun stuff, hobbies, biking, cooking, and not stressing over what might be, because MGUS is a waiting game. Even if someone has SMM it may not morph to MM, and if it does then the avg. prognosis is still for years of biking. ResearchGate has a lot of peer reviewed papers on MGUS, SMM, and MM research.

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Replies to "I've had MGUS for 8 years. I had a BMB this summer and plasma level was..."

Thank you; this is helpful. I also have translocations but a quite low plasma level of 1.6 (are we comparing on the same scale?). Trying to get all my climbing done sooner rather than later, just in case! Adams and Rainer this summer, anyone? 😉