Does anyone else have MGUS?

Nope, she didn’t indicate a follow-up. At first, my GP agreed with me and was going to refer me to Proncess Margaret in Toronto, but he has since changed his discourse and now says that he agrees with her report. In Canada, in a public system, they all have each other’s back. I would need to go completely private, and this is what I’m trying to figure out right now. I’m pretty tolerant of pain, but this is at a whole other level.

Sorry to hear that nathangolden, sounds like the Aussie system where patients are solely a cog in the huge mechanism for the medical industrial complex to make money from our suffering. I can really empathise with your situation, having been stuck in the Au public health system for some years now. Going private, and paying around $300-$600 per 15 mins consult here is out of my reach, but I know without a doubt that if I had money I would be genuinely helped by the private system. My haematologist was just so outwardly ignorant at the last appointment I’ve ditched him for his colleague - hopefully she will want to help (I’ve gone into stage 3a kidney disease rapidly, with increase in paraproteins of 25% since last visit (7 months ago), as well as feeling bone pain in a lot more areas, and fatigue. I personally think in my case a repeat BMB (last one done Aug 2021) and nephrologist review would be the minimum to do to be responsible towards genuine patient centred care. So that’s what I’m now pushing for - hopefully it happens.
Good luck to you in finding an unbiased professional in the medical field, who is prepared to put your best interests above those of the system and their pockets 🙂

A fellow-Aussie! Although I was born in Canada, I lived in Melbourne in my younger years and have always considered it home. I'm so sorry that you find yourself in the same predicament as me. I wouldn't wish this on my worst enemy. I, too, am noticing that there are more and more areas that now hurt. Going private would cost another $10,000 a year which I don't have, but might have to come up with so that I can be put out of my misery (not in the final type of way...at least not yet!). I have started losing weight. Don't know if it's thyroid related as my GP thinks (he blames everything on my thyroid, nothing on myeloma, thus why nothing is moving). I guess time will tell. I wish you good luck as well cobba. Hang in there. I'm always here if you need to chat!

Good morning, Shawnnyce. @shabbalv55 It’s been a few months since we chatted. I know you weren’t getting very much help or information from you current doctors. I was wondering if you made the call to switch hematologists? ☺️

Thanks for this! I'm 41 year old male and just got diagnosed with Mgus out of the blue, and went through all the tests (BMB, Full Body xray, and full body Pet Scan) and came out with nothing more than Mgus. Was wondering how to think about this as I've lost my dad and grandparents to cancer, and it was hard to think through what this might be. Your comment gave me a new perspective! thank you!

Welcome to Connect, @jzeee So many of us in the blood cancer and disorders group can relate to a new diagnosis that’s out of the blue! Leaves you feeling a little clipped off at the knees.
MGUS Monoclonal gammopathy of undetermined significance (MGUS) is a condition where you an abnormal protein in your blood called the M Protein. I’m posting a link below to a good article that explains what this is all about:
https://www.verywellhealth.com/monoclonal-gammopathy-of-undetermined-significance-4771132

All of your tests confirmed that there is nothing cancerous happening in your body and that condition may not change. MGUS can be very slow to develop. If there become too many of the M protein cells they can cause some health problems. There are factors which can potentially determine the risk of development into a more aggressive disease. Some people don’t progress. But it’s not a ticking time-bomb so the best thing you can do is just continue to have the routine blood work to monitor your blood. You’ll be under ‘active surveillance’ for a while as your doctor looks for trends in your blood work. If nothing significant changes, then your tests may be spaced further apart.

The deaths of our parents, siblings, grandparents who have passed from cancer is always in the back of our minds. But we can’t let that interfere with how we live our lives going forward. Try not to be consumed with ‘what ifs’ because that robs us of precious time and creates undue stress.

What were your symptoms which led to all of the testing?

@jzeee Let me echo my welcome to Mayo Clinic Connect.

MGUS is not a "death sentence", and indeed most people do not progress beyond this level. You will be monitored every three to six months. Please, go live your life. It is really easy to lose sight of what is important to us, as we can do when we get a diagnosis we are unsure of. You might get visions of an altered lifestyle, that you need to change things up. Well, yes, if you are not already doing moderate exercise, healthy eating habits, and creating less stress on a daily basis. But we need to think about doing all those things, even without a diagnosis like MGUS!

I hope as you read through the posts here, you will see you are not alone. That is the wonderful thing about Mayo Clinic Connect. It connects us, and lightens our load of concern.
Ginger

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 🙂

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!

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 🙂🌺