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Does anyone else have MGUS?

Blood Cancers & Disorders | Last Active: Jun 15 7:51am | Replies (774)

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@harley22

I’m totally in the dark with this mgus and kappa light chain stuff.
It was picked up on routine bloodwork that was done.
So far my levels have remained constant and get checked every six mos.

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Replies to "I’m totally in the dark with this mgus and kappa light chain stuff. It was picked..."

Glad the levels have stayed constant.
Would it be safe to assume you’re currently MGUS asymptomatic (having incidentally found it on routine bloods)?
It may be worth finding out a bit more about your version of MGUS so you can be aware of specific symptoms that may be unique to it.
Despite the common mantra of ‘it doesn’t progress in most’ (what/who is ‘most’, and how is ‘most’ identified), that’s only a statistic, and stats don’t take into account individual cases (in other words, a false sense of security can come from believing that a statistical output describes ‘everyone’, when it is - by design - never 100% of people who ‘don’t progress’, so there’s still a very good reason to know your type and it’s characteristics so you can be aware of what to expect if things do change - sometimes it’s not debilitating symptoms, and these are the most easily ignored).
And there are lots of reliable sources of info out there with regards to defining the types; Blood Cancer UK has an easy to read introduction here: https://bloodcancer.org.uk/understanding-blood-cancer/mgus-monoclonal-gammopathy-of-undetermined-significance/ which gives the low down on types.
Beyond this, there are various publications on classifying risk, however, there are different organisations/bodies that have different classifications, and this is wandering into the realm of statistical interpretation; intelligent and experienced interpretation, but still interpretation. Risk can therefore still lay outside of what these consensus groups agree on in terms of their definition of risk of progression (ie: some people will be within their predictions based on statistical calculations, and some won’t, and the reason I say this is because medicine still doesn’t know why some people progress and some don’t - the data is based on observational studies only - so the basis for accuracy is not grounded in clear, known, proven results..eg, a broken leg is a result of a trauma to the bone (verifiable cause-effect), instead of a broken leg being the result of unknown/suspected origin (non-verifiable assumption)). If something is not based in verifiable fact and yet statistical data is extrapolated from it (based on observations, which are good, but not 100% accurate), it’s lacking some rigour/generalisability (unable to be applied across a population (population being a group of people with some sort of classification..like, MGUS for instance, which is known to be unrelated to lifestyle, and in terms of risk factors - age, sex, ethnicity, immune disease status, family history - many people do not fall within any of those *observed* characteristics, therefore it’s worth identifying and learning about the particular type you have, along with if you have more than one type, which can and does happen on occasion)).
Anyway, that’s what I learned from my various stats lecturers over the years. Feel free to disregard at your leisure if this doesn’t resonate 🙂
I hope you have many long years without progression 🌺