Does anyone else have MGUS?

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...

Not to worry - when that happens (especially after writing a nice long message!) I tend to think “oh well, maybe it wasn’t meant to be posted” 🙂
Yes I remember reading in another post of yours somewhere on the site that you’re being treated with chemo - I sincerely hope that you’re doing well with the treatment 🌺
I’ve read a lot about the current research and have actually reached out to some researchers to find out more…and I’m adding my name to trials registers to be a Guinea pig in future, regarding MGUS/MGRS investigations.
There’s a certain extra that people have to offer when they’ve been through/currently going through something challenging, and it certainly shows with your efforts..aka your determination and persistence to be a PITA here for everyone’s benefit 😄🙌🏻
Thank you for your kind holding of thought, however please don’t think a minute for me - SMM is nowhere near being a concern of importance, even if it does eventuate…I’ve had other things have a much greater impact on function/longevity, so to place it in context, it’s maybe a 4/10 on the ‘stuff for me to pay attention to’ scale.
I’m only focussed on what gets in the way of me doing things I need to do to survive; instead of putting any value into what the particular label is of the next function-limiting disease is. I’ve had various ‘bad’ pathology chopped out of my body from various places, and always refused chemo/radiotherapy, and my approach is to not use those methods unless it’s an experiment to help future patients.
I’ve clocked up enough hours on the operating table already, in the infusion clinics already, and in the waiting rooms of too many docs already, to want more of that if SMM comes along 🌺

@fayeraye Welcome to Mayo Clinic Connect. It can be scary to hear news like this, and pretty confusing, too.

My suggestion is to ask your dr for a referral to a hematologist oncologist. You want to have a specialist following you, specifically for the reason they have more interest and information. I would thank your primary for finding this. There is a lot of information out there you can look up to educate yourself.

http://www.myeloma.org is the website for the International Myeloma Foundation

Please don't go down the rabbit hole of Dr. Google! It can be real scary, and possibly lead you to misinformation.
Ginger

Hi @fayeraye. First, a little bit about your new diagnosis from Very Well Health, which give a great explanation of this condition:
“Monoclonal gammopathy of undetermined significance (MGUS) is a medical condition that has no symptoms. It causes the production of multiple copies of an abnormal protein in your blood.”

Basically, when you had your blood tests at your physical your doctor noticed the presence of an abnormal protein in your blood called the M protein. For many people this doesn’t cause an issue but over time if too much of this M protein collects it can create some problems. But it can take a very long time for this to happen and in some people nothing changes and no treatment is required.

Having routine blood work as your doctor suggested every 6 months is a good way to keep an eye out for any possible progression. For now, it may be fine to stay with your pcp. But if there are any changes in the future you may opt to see a hematologist or hematologist oncologist. They specialize in blood disorders and seeing them would be the next likely step to take. There are different risk types of MGUS which can predict the likelihood of the condition to progress. So for that reason, it would be valuable to be with a specialist.

Here are 2 informational articles on MGUS.
https://www.verywellhealth.com/monoclonal-gammopathy-of-undetermined-significance-4771132
https://www.healthline.com/health/how-serious-is-mgus
I know getting a new diagnosis can cause a great deal of fear and stress especially when it feels so ‘out there’…like, is something going to happen or not!? The proverbial, “waiting for the other shoe to drop”. It doesn’t mean you live in fear from checkup to check up. Live life normally and try to stay away from Dr Google because that can just add anxiety. ☺️

Welcome to Connect! This is such a great community and I think you’ll find you’re not alone here. We have quite a few members with MGUS who will be more than happy to answer any questions you might have. You might enjoy exploring the 70+ other support groups we have in the forum and don’t hesitate to jump into to any conversation where your life experiences and journeys might offer support to someone else.
What types of things bring you joy daily?

@mguspixi25 My reply to you last night went somewhere, but not onto this forum!

Multiple myeloma has many different facets, and there is fortunately a lot of research going on at this time. A side note, I am on chemo for my case. It is my sincere intention to be available to support and assist others however I can, for as long as I can. In other words, be a PITA [insert laughing emoji here]

I will hold all good thoughts for you, that your situation does not morph in to Smoldering Multiple Myeloma.
Ginger

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.

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 🌺

@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

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 🌺

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.