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Does anyone else have MGUS?
I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?
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@fayeraye Welcome to Mayo Clinic Connect. It can be scary to hear news like this, and pretty confusing, too.
My suggestion is to ask your dr for a referral to a hematologist oncologist. You want to have a specialist following you, specifically for the reason they have more interest and information. I would thank your primary for finding this. There is a lot of information out there you can look up to educate yourself.
http://www.myeloma.org is the website for the International Myeloma Foundation
Please don't go down the rabbit hole of Dr. Google! It can be real scary, and possibly lead you to misinformation.
Ginger
Not to worry - when that happens (especially after writing a nice long message!) I tend to think “oh well, maybe it wasn’t meant to be posted” 🙂
Yes I remember reading in another post of yours somewhere on the site that you’re being treated with chemo - I sincerely hope that you’re doing well with the treatment 🌺
I’ve read a lot about the current research and have actually reached out to some researchers to find out more…and I’m adding my name to trials registers to be a Guinea pig in future, regarding MGUS/MGRS investigations.
There’s a certain extra that people have to offer when they’ve been through/currently going through something challenging, and it certainly shows with your efforts..aka your determination and persistence to be a PITA here for everyone’s benefit 😄🙌🏻
Thank you for your kind holding of thought, however please don’t think a minute for me - SMM is nowhere near being a concern of importance, even if it does eventuate…I’ve had other things have a much greater impact on function/longevity, so to place it in context, it’s maybe a 4/10 on the ‘stuff for me to pay attention to’ scale.
I’m only focussed on what gets in the way of me doing things I need to do to survive; instead of putting any value into what the particular label is of the next function-limiting disease is. I’ve had various ‘bad’ pathology chopped out of my body from various places, and always refused chemo/radiotherapy, and my approach is to not use those methods unless it’s an experiment to help future patients.
I’ve clocked up enough hours on the operating table already, in the infusion clinics already, and in the waiting rooms of too many docs already, to want more of that if SMM comes along 🌺
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2 ReactionsI was told by my doctor that the disease WILL progress in everyone at some point, unless they die of something else before the MGUS progresses to smoldering or MM. He says it could be 15 - 20 years from the first MGUS diagnosis until it progresses, but it will progress. I am relatively young for the MGUS diagnosis, as my doctor told me that most people are diagnosed in their 70's and I am in my 50's. He does my bloodwork every 3 months and my next appointment is about 3 weeks away. I'm curious as to what he will say this time, and I've recently been diagnosed as also having Addison's disease. Just some info...
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1 ReactionWhen they first found my M-spike, I immediately asked a very good local oncologist friend about recommendations for a hematologist. He was very adamant that I should go to one of the major medical centers in our area. He said that the local docs are used to dealing with less rare diseases like leukemia & anemias, but not so much with MGUS/MM. There are many subtleties to understanding how all of the numbers relate to each other and you need someone who can do that.
My biggest issue right now is my ferritin levels. I will get an iron infusion at this next visit. Beyond that, I seem to be asymptomatic.
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1 Reaction@ajbonett MGUS is often found while another health issue is being investigated. If we look at 15 to 20 years before progressing, that leaves me a lot of hope to not dwell on the "what ifs". What has your doctor indicated your treatment will be for the Addison's Disease?
Ginger
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1 ReactionI agree that it gives us time to not dwell on the "what ifs." My doctor has told me that when your cancerous cells reach 10% of all your plasma cells, that is when they start treatment. The percentage can remain low for quite some time, but then suddenly spike to higher levels. This is the indicator to start preparing for things to get worse. In the meantime, just keep on doing what you do while keeping an eye on things.
As for Addison's, I haven't told me hematologist yet. I will at our appointment early next month. I was just diagnosed as of this past week, so we haven't made any decisions on treatment yet. It will most likely be a steroid patch, but I have a very "touchy" system, so we will see.
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1 ReactionI thank you for all this information you gave me. It’s very helpful. I think I’m going to get a specialist. I feel more comfortable.
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1 ReactionThank you, I am definitely getting a referral. I feel much more comfortable in having someone that is up to date on this disease.
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1 ReactionMy primary was the doc who sent me to a hematologist oncologist for follow up to my MGUS on my lab results.
I am now being followed up every 6 mos with bloodwork there.
I just don’t understand why my doctor is waiting. Everyone I’ve talk to is saying to go see a specialist.
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