Is there anything to help stop or slow progression of MGUS?

We are here for you. I feel alone too. Are you saying that you’ve had MGUS for 12 years and it hasn’t progressed to blood cancer? That’s good to hear. I’m sorry for the other health issues you’re dealing with.

I have been doing all the reading and research for my spouse, diagnosed in 2019, by his astute PCP, just before Covid and slow to get to see a heme-onc for further eval. 6 months monitoring by blood work. Nothing on imaging in 2019 and it has not been repeated. I could not see heme-onc with him and once he heard cancer his brain did not absorb much of, if any, of the rest of the conversation. Patient education was not offered then or since. He cannot wrap his head around the fact that his will likely never progress. In his head he has cancer.

His primary symptom was peripheral neuropathy and as a very active athletic guy with other health issues, that was for him a last straw moment. He's obstinate about disregarding dietary changes, so I can only encourage--outside my circle of control. The PN in MGUS seems to be paraproteinemia--driven by accumulation of excess proteins (the antibodies) on the myelin sheath of the nerves, as I understand it. Poorly understood in the neurology community at large. The typical pharma--pre-gabalin, gabapentin, lyrica--are poorly tolerated by him and many others, so not worth the brain fog/disorientation/loss of balance, to pursue those
Stay away from B6--check your supplements that you are not exceeding dose--should all be achieved by food choices, not supplements--it is similarly a cause of PN in those who have not had other underlying factors.
He has become more and more sedentary over the intervening years, suffered bouts of gout/inflammation, that I suspect are separate from the MGUS but pile on to his symptoms and thus add to his depression.
Finding new hobbies has been something he's only just started to discuss openly, to move on from his funk. He sees a MH specialist but irregularly. His depression and anxiety can ripple out and make our relationship struggle in real life. So as his support person I have to be certain I am getting MH support. Being open and honest with your real life people is important. I hope you have that kind of ongoing support

https://www.mgustherapy.com/post/survey-on-curcumin?utm_campaign=520f328f-07f9-43f6-ab9a-d88b6b84ccd3&utm_source=so&utm_medium=mail&cid=727d2595-0f0f-4603-b000-d3b01b7fc0c1
Here is another interesting link on a completed survey that y’all might find interesting/useful. I haven’t done any research on this doctor as she lives in another country.

Will read this article. Thank you so much!

Thank you so much for this share. I can relate to so much you said. I was diagnosed earlier this year. I am a 65 year old female. I can’t get the cancer word outside of my head. I am taking supplements maybe too many. On this site many recommended turmeric with Curcumin which I am taking. Can you tell me about his diet?

his diet is horrible....he has a massive sweet tooth (possibly pre-diabetic) and snacks on chips and other junk food
doesn't like vegetables, so rarely eats any
probably too much red meat, but no cholesterol problems so he does what he wants, french fries are his preferred side dish
I do most of the cooking so he does eat well-prepared chicken meals 4 or 5 nights a week, but likes pizza and other take out
and he lives on diet pepsi
it makes me crazy
I try to use the Mediterranean diet in preparing our meals, as well as the DASH diet recommentations
I do very few supplements and he does none
they are not regulated by the FDA and the quality parameters concern me;
R-alpha lipoic acid is presumed to be helpful with the PN

as to the "anticipatory" grief upon hearing the word cancer, there are therapists who can help with that and put it in perspective, but it may take some work to find one who is a good fit, to help live in the present

Thank you so much for this. Living in the present is a hard. I am having so much anxiety about this progressing. How long ago did you say your husband was diagnosed with MGUS.

diagnosed in 2019, after a year + of the initial peripheral neuropathy started to bother him
he was dealing with degenerative disc disease and its complications since 2007, two surgeries, and so on, so it was an annoying symptom that he disregarded in light of his other difficulties

going on 6 years and no significant changes to his blood work, every 6 months
the PN does seem to be getting worse, so that's frustrating
however his back is also worse and that takes precedence

Sounds like his MGUS has been stable? Gives me some hope

You are young for the diagnosis. I was 55 when diagnosed with IgA. I am being treated for mast cell activation syndrome as well. I am 60 now.

I take pepcid, Allegra, claritin, vitamin d and benadryl everyday. My IgA went down for the first time this year but my lambda light chain went up a bit.

My father-in-law had MGUS which became Multiple Myeloma and was treated 8 years ago and is free of it today at 85.

My brother's mother-in-law was not diagnosed with MGUS so her Multiple myeloma had progressed before diagnosis and she passed away just a year after diagnosis.

It is about early diagnosis and treatment.