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Does anyone else have MGUS?

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

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@mguspixi25

Sorry to hear you’ve lost relatives to cancer.
Cancer runs in my family also, however it’s not something I worry about for my own situation (we all tend to die relatively young anyway, in the upline I’m from).
MGUS may not progress quickly, but that’s only addressing one component and that is the ‘cancer’ bit of it..besides that, there’s risks of other problems (eg amyloidosis, kidney disease). For instance, the haematologist I’ve been dealing with keeps raving on about MGUS not having any effects nor turning into myeloma, however I’ve gone from pristine kidney function (on the live donor list to give one away), to stage 3a ckd in less than 4 years - there’s no other explanation than mg(renal)s (MGUS with renal probs is termed MGRS). That’s clearly not cancer, but it’s an effect of MGUS.
A decent doc is one that doesn’t just focus on the ‘it’s not cancer so it’s nothing to worry about’, they also watch for the non-cancerous risks to health that can develop while living with MGUS (in my case, I’ve also significantly jumped up in M-spike/paraprotein level in the last few months, as well as other signs showing progression of the ‘oops it might actually be turning into cancer’ kind).
Even though ‘most’ cases progress slowly (statistically), I tend to think that a person isn’t a number based on calculations, and that every individual benefits from appropriate monitoring according to their individual situation (because I believe stats are at best rough guides, and not the rule - but that’s just a personal opinion based on previous experience in the health industry, as well as from some years dealing with various health challenges).
Sensible diligence and taking charge of your own situation by learning about your version of MGUS so you can be aware of symptomatic change will help to recognise anything worthy of raising with your medics. Quality research papers and pathophysiology of MGUS and myeloma are helpful, I found.
My diagnostic bone marrow biopsy/aspiration was in august of 2021, which showed just under SMM (which is 10%), IgG Lambda, low IgA. Bloods at that time showed an ok K/L ratio, and I had significant Bence Jones in urine. Now, I have nearly double the blood M protein, the K/L ratio is very low and outside normal limits (very high Lambda, low Kappa), and lots more BJ’s in urine. In just 2 years. So, MGUS/MGRS is not so slow in my case for either the ‘cancer’ markers, and the kidney damage markers.
However I should say that this isn’t concerning; I have other health problems that cause me much more daily disruption than the above, which take a lot more time and focus to manage, and I have other more attention grabbing stuff to take care of like bills and getting around without falling every day or so due to neurological dysfunction. Relatively speaking, MGRS is way down my list 🙂

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Replies to "Sorry to hear you’ve lost relatives to cancer. Cancer runs in my family also, however it’s..."

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.