Does anyone have any info on MGUS treatment or risk of progression?

@nick86 You're very welcome. It is easy to use a search engine, and find so many results, no matter the subject matter. I'm guilty of the google rabbit hole effect, myself! But trying to limit that rabbit hole to non-health related topics. Mayo Clinic, Cleveland Clinic, large teaching hospitals and those types of institutions, professional organizations related to a specific issue [in this case, International Myeloma Foundation]
Ginger

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Im up to 3 grams/day in 3 doses plus a turmeric tea with black pepper or piperine.

@nick86
Hi Nick,
I'm so sorry to hear you've joined the MGUS club at such a young age. While the chances of your progressing to something worse are only 1-2% per year, I understand and can relate to your anxiety. Like you, I'm looking for natural ways to reduce the risk of progression beyond exercising, eating healthily, and reducing stress.

I recommend looking on the website clinicaltrials.gov for MGUS/SMM studies. Even though you live in the UK and probably can't participate, you can incorporate some of the study ideas into your health regimen. Be sure to run them by your doctor first of course. So far, I've found studies investigating whether fasting 14 hours between dinner and breakfast, taking curcumin with peperine extract, eating a whole food plant-based diet, and taking Metformin decrease the risk of disease progression. Trying these things at the very least makes one feel less helpless. I wish you luck in your health journey.
-Deborah

Thanks so much for your reply Deborah 😊 I'll have a look at the link. It's such a strange thing to be diagnosed with but I'm just trying to keep in mind that it could have been so much worse. Best wishes.

Yes all of that and I am adding omega 3s which in some studies might have shown beneficial ..

Hi @nick86, sorry to hear you have MGUS at a young age. The benefit to finding it early is being able to watch it periodically to see if it’s doing anything sinister or just being the relatively inert aberration that it is.
When I was told I had MGUS I didn’t really know too much about the sub-types so I spent as much time as I needed researching through academic and research databases, reviewing the scientific literature (research papers), to determine what was the best and most high quality information to learn from. Some I undertook critical appraisals of their findings to ensure the data presented was robust. This sorted the wheat from the chaff, as some above have already mentioned when discussing sources that may be not as accurate as others. Yes, there is some contradicting information out there, however I find if you dive in to sifting through the actual research (instead of having to take into account weakly evidenced editorials, inaccurate interpretations, and incomplete and unreferenced junk) then there’s an abundance of accurate info that helps with gaining clarity relatively easily.
When I got MGUS this process took me all of around 1 week of a couple of hours each day (I think I read around 40 curated papers that week, and that was easily enough to get a firm handle on what it’s all about).
Now, in Au I provide a little list of helpful accurate resources for people who contact me with their specific results. Apparently it’s working for them too.
I find avoiding information just perpetuates fear. Actively finding accurate info gives power in knowledge.
For instance, the blanket claim of progression at 1-2%/annum doesn’t fit all types/risk stratifications, and because I did appropriate and robust review of the literature, I provided my reasoning to a new haematologist along with my new test results, and she has found I’m zooming along from MGUS to SMM in ways she’s “never seen before”. But, this wouldn’t have been possible to discover without extensive knowledge building, evidence gathering (both in specific tests and in comprehensive scientific data review), and objective presentation to my new doc.
I was Dx’d two years ago with MGUS at 47 years old, and have had MGRenalS for at least the last 7 months, with another BMB on 9th November where they expect SMM (based on current Mspike). I’m not convinced, and I think it’s a simple case of amyloidosis based on lambda light chains being heavier - and thus more damaging per volume - in molecular weight than kappa (kappa/lambda ratio is below range, lambda level above range). We’ll see who is right once the BMB comes back. Due to the chronic kidney disease (commenced 7 months ago) they’re doing a kidney biopsy as well.
Treatment? Well, that’s apparently chemo anyway, so they say, to treat light chain disease.
Not to worry - I have learned much of what the doctors use to base their knowledge on (I’m a former lecturer of anatomy and have a 9 year history of education in health sciences), and have zero concern for what I may be facing in terms of Dx and Tx.
I know this can be fear inducing for some people, however in my case, I have followed the usual path of objective learning, sifting the rubbish out, and using evidence building to determine facts.
And this isn’t the worst thing to happen to me in any way (on the scale of horrid stuff I’ve been through, this is only about a 3/10, so I guess that helps too, in terms of the fear/distress factor not even rippling the pond).
All the best, and finding objective, reliable fact is helpful in allaying concerns, is the best I can say.

Thank you so much for your reply. I'm sorry to hear that you've been through so much that MGUS barely registers. I really admire your attitude to research and it seems to me that you're much more adept at separating the more reliable sources.
The thing that I really don't understand about MGUS is why the risk stratification exists in the first place? I have IGG Lambda 1.2-1.3g/dl which is considered "low risk." But this can change at any time if the numbers go up. To me it just seems like I've entered a lottery and at any time the diagnosis can change to multiple myeloma.

Really kind of you to say - thank you.
Research is key to balancing the probability of change with some valuable insight, I believe. And there are other factors that may be associated with non-cancerous changes that - if you know they’re there and how to recognise them if they show symptoms or signs - you can monitor, which I personally think is empowering to know because things don’t happen without you knowing what to expect if/when they do.
I’ve got IgG Lambda with low IgA.
I familiarised myself with that specifically, and then sought out info on the more prone non-cancer type disorders that can happen. Because of that, I was able to alert haematology of renal changes/cardiac changes/lung changes that have recently happened, and as a result of objective tests, they are now intending to treat early (kind of throwing convention out the window in treating ‘MGUS’ when the word on the street is “we don’t treat MGUS”, thus individualising and maximising therapeutic trajectory rather than sticking with the blanket statistical data that isn’t so one-size-fits-all after all).
Different risk of progression within subtypes exists, however I personally believe it’s much more individualised (and much more differentiated) than what the grouped statistical outputs show.
I started with the basics of learning all the norm ranges for all the test results, then assessing which were key to interpreting risk of progression (individually and in conjunction with each other), then I researched those risk factors to understand where I stood on risk. From early after my first BMB I realised that I was very much not on the 1-2%/year list, and when I tried to discuss my findings (summarised into a short paper with references for my haematologist), he was dismissive and elitist. Now, just on two years later, and with a new haematologist, she says I am likely correct, and I am not like expected MGUS trajectory.
But that doesn’t mean this applies to everyone; what it does show is that learning and understanding facilitates responsible action if needed - we are our own best advocates for a long and healthy life when we know about our bodies. Don’t let a scary thing take control just because it’s unfamiliar; learn the bark of that big dog, and once you speak it’s language, you’ll know how to calm it down.

Hi Rick, welcome to the forum. You feelings as a newly diagnosed MGUS Pt are certainly relatable. I went through a period of dread, as though something was hanging over my head and the shoe will eventually drop.
I admire the tenacity of @mgrspixi25 in the quest to understand this disorder. As a layperson, I feel infinitely less qualified to weed through the stacks on this and in fact, avoid going down that rabbit hole. Having said that, I have read a lot and have been provided some very useful information from the Mayo Clinic and my own oncology provider. I am picky about what I read and stick to vetted information.
I watch for progression and due to the regular scrutiny of my body chemistry, get better preventive medical care than anyone I know.
I’m three years out from diagnosis and my numbers are slightly increasing, but slowly. I “graduated” from appointments for blood draws every 3 to every 6 months.
Most important for me is to find the right medical team. I want someone up on current studies and trials. I want a good communicator who doesn’t gaslight me, but doesn’t send me into panic mode. I ask lot of questions. I expect patience and thorough explanations. Find the right physicians.
Chances are at 71, I will die of something else, but I’ll go out swinging. I wish you well on this journey.
Patty