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@paulita
I hear you. It's not such an easy, linear disease to understand. I look at it a little bit like I look at car repair… there are things I definitely need to know in order to keep the darn thing running, but there are many things that I can just trust that the car dealership knows and if it's broken they'll fix it or at least give me the information I need to know how to keep the darn thing from breaking in the first place.
it's a simplistic analogy to be sure, but there are so many complicating factors such as coexisting conditions and overall health… Age. What was helpful to me was to ask my hem/onc doc, "When you look at my blood analysis numbers, at what point would you be concerned? At what point would you consider treatment?".
I ask lots of questions that I have written down between visits. I'm sure when he sees me walk in with my notebook his eyes involuntarily roll but he is very patient with me and answers all my questions.
I found this link very helpful. There's a lot of information in there and some of it may not be useful to you but you can cherry pick what you read.
https://www.lls.org/sites/default/files/2024-06/FS40_Monoclonal_Gammopathy_MGUS_2024.pdf
Since your diagnosis, have your numbers remained stable?
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Thank you, that's a useful link.
My levels have gone up slightly but not enough to be worried about I think. My teriparatide treatment for osteoporosis may be having an effect on the numbers.
I am just beginning to understand that the polyclonal increases have nothing to do with the monoclonal condition (MGUS). Well, I'll ask my haematologist about that at my next appointment with him next month.
The most important thing for me is to manage my anxiety and trust him I guess.