Does anyone else have MGUS?

@lauraz and @carolesg I find the falls are getting worse and more frequent, and always think it would be nice to have an intervention to prevent the progression of the non-cancerous symptoms associated with this disease, considering that it’s cancer is not the problem, the problem is the remaining issues that arise due to the existence of paraproteins and the resultant effects.
If there was something not chemotherapy related that could impact this part, then that would be amazing. I think it’s not good enough for the medical profession to watch people who are evidently (via test result as well as symptomatology) symptomatic and simply shake their head and brush off their hands saying there’s nothing that can be done - to me that’s like saying to someone we don’t have a treatment for what’s causing you to have this heart problem, so we are just going to ignore it and pretend it doesn’t exist by calling it heart disease of undetermined significance. It may incapacitate you, yes; but that’s not our problem. And if you continue to faint and have significant falls, that’s also not our problem.
It’s kind of barbaric in some ways to be not actively addressing the non-cancerous symptoms when they are altering body function and resulting in harm to the person, with investigation of other forms of treatment and active research into getting rid of this what I believe to be ridiculous nomenclature of wishy-washy-turn-a-blind-eye ‘undetermined significance’, and finding why some people have changes in internal body function because of the non-cancer effects, then naming it accordingly..just like how there’s the accurate name for when MGUS starts causing kidney disease, that is called MGRenalS.
Yes, there is valid reasons not to give cancer specific treatments to someone who is not classified as having overt cancer to the volumes that warrant cancer specific treatment because it’s going to create significant side effects while not killing enough cancer cells, but there is a huge opportunity to study and develop interventions discrete to those sub aspects of the disease that cause changes in the body that aren’t cancer. To continue to perpetuate the mantra that those who are symptomatic but not cancerous should just suck it up and be thankful they don’t have cancer is like saying to someone with a fractured arm suck it up and be thankful it isn’t your back, while sending them home because you’re not going to treat them for the suffering they are currently going through.
That is quite unacceptable and significantly cruel in its arrogance.
Any time a person is having objective changes due to disease processes that then affect their quality of life, there is an onus on the medical profession to acknowledge, investigate and find help for that cohort of people.
Imagine if a car developed a particular problem and all mechanics simply said “oh, that’s engine failure of undetermined significance - it could have critical failure tomorrow, or it may last another 10 years; either way, I’m going to ignore it and you just keep driving and bring it back here for me to check the dip stick each 6 months”. I would spin him and put my boot in his backside!
You can see my point - said rather emphatically and with some humour - however the underlying seriousness of people’s suffering being dismissed, minimised, and thus not adequately addressed needs to change.

I hope they can treat the amyloidosis for you, and you can improve 🌺

I think that you have a rare gift - to see a sunnier side! Thank you. Best wishes

Yes! We have to remember that all treatment options carry risk. Personally, I prefer to embrace the least intrusive approach until such time as my oncologist/hematologist taps his foot and says “it’s time.”
It is a bit maddening to wait, for those of us who are proactive in other aspects of our lives, but you are so right that chemotherapy in particular is harsh.
We can live life well, eat healthy, exercise, take nutritional supplements (if supported by our medical team) and keep our heads in a good place. MGUS is not a pronouncement of dreadful bad things to come. We hope to beat it and die peacefully in our sleep after our 100th birthday celebrated by a gubernatorial proclamation and a party in Time Square.
Or…at least a cake at the nursing home.
😂😉

Thank you for this. Take care.

I have it too was diagnosed approx 8 months ago. Had a 6 month test and MSpike remained the same. Right now I am suffering with knee bursitis. Hope your well

It’s sad to know there are many of us who are suffering and in my opinion suffering needlessly. I can’t help but believe if we could be treated for our MGUS, our lives would be substantially improved and at the same time our chance of progression to myeloma forestalled or never occur. But I am the voice in the wilderness as far as my myeloma doctor is concerned. I hope you stay safe.

I have been falling a lot lately and actually hurting myself a couple of times. At first I thought I was just not being careful, then I realized to myself that it had to be more than that. Hearing other people having the same symptoms is comforting although sad that we have to go through it comforting to know you're not alone

I was recently diagnosed and I am about to finish or rather complete a series of amyloidosis testing but have been diagnosed with it. I have so many problems it's hard to know what's causing what but recently had renal vein angioplasty and stunts put in due to kidney breakdown. I'm not certain of what all it's doing because I do have a lot of problems but hopefully these last few tests will help determine what exactly it's affecting

I’m very sorry to hear this 😔
I agree it would be super helpful to find out the details of diagnosis; I have a colleague who was Dx’d with IgM kappa who has some form of brain vasculitis - she had 3 strokes before they figured out what was going on, and that the vascular issues were related to her unique form of MGUS (there are other sub-categories that are specific to her, however those details are not known to me).
I am in Au, otherwise I would try to help you in some way.
Having said that, I hope there is a mechanism where you can speak with a haematologist directly, who is a specialist in myeloma and MGUS, who will at the least give you all the defining test results, but will go further to inform you of the likely associated symptomatology/things to watch out for according to each type.
Wishing you the very best.