Does anyone else have MGUS?

I hope all is stable when you get the results 🌺
However, if not, there’ll be a plan - good docs know what to do. And ask questions like: What now? How do we proceed? What should I expect? What are the tests needed to confirm this? Etc 🙂
I’ve learned to pay attention to indicators like kidney function changes, peripheral neuropathy, pins and needles, fatigue, the amount of night sweat, bone pain, and swelling around my eyes/face, hands and feet. When all this starts getting worse, and doesn’t get better (say if it’s just because I’ve had to push myself or have had extra stress), I know things are changing, and I let the docs know (not that they bother with a response here in the public system). I have a chronic infection (low immunity), however the last 2 antibiotics caused aseptic meningitis (I couldn’t see and my brain hurt a lot), and ventricular ectopic issues (heart rate around 32-38 bpm), so at the moment the highest risk to health is an unchecked infection (Gp will not prescribe any antibiotics as she is worried about her liability insurance).
Having mgrs with a near doubling of M proteins since last (4 months apart), I still am not close to multiple myeloma, only smouldering - and nothing in terms of treatment regime changes here between SMM and MGRS, so whether I have MGRS or SMM is a moot point due to zero change in intervention approach.
If anything changes in your numbers, you’ve always got people to talk to here if you’re worried.
In terms of stressing, my approach is to put it into context of what else I have to do/deal with (work, function, etc), and it kind of melts into the background.
The only little concern I have is an upcoming knee surgery to address the broken prosthetic (I had a bad fall and damaged the knee replacement), which has been broken since January (the public system is great at long term torture hehe), and the recent permanent loss of some kidney function when it comes to the drugs used in surgery/post op. considering the complications now encountered with antibiotics (which will be needed due to low immunity - kidney function greatly impacts how some drugs perform).
Anyway, that’s a worry for another day, and I’ll do more research on how best to manage (including what I can find on the adjusted doses of all the meds expected to be used) and have a discussion with the anaesthesiologist beforehand to make sure they don’t inadvertently jab me with something contraindicated.
If your worried, post your before and after numbers, if you’d like to 🙂🌺

The best to you in your upcoming
surgery! Please take care. Your attitude is commendable.

Been doing pretty good lately, but my anxiety is starting to get the best of me. My scheduled 3 month blood work is this coming Monday, 18th, and my follow-up appointment is on Sept. 28. Wishing and praying that everything is ok, hasn't progressed, but what if it's not?
In bed at night and my mind just keeps giving me scenarios. Some positive and some not so positive!
Praying that they find a cure for ALL of us!! Take care!

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 🙂

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.

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 🌺

@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

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 just diagnosed with MGUS AS OF Aug 30, 2023. My doctor said I need to be re-checked again every 6 months. My question is when should you see a specialist, hematologist/oncologist? Does anyone know? I have no symptoms and they caught this at my regular check up.