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Starting MGUS journey: It feels like the "in limbo" disease
Hi all, I am very new my first post. My journey started going for regular coughs and uti’s. I was exhausted. GP phoned said all blood work was ok with exception of one which she wouldn’t elaborate on. 6 months later I received Referral to see a haematologist. Didn’t think much of it. Got bloods done again protein levels were high but consultant was making me feel this isn’t a concern and I couldnt worry and should forget about it but just to be sure test again in a year. This time a different blood test was carried out Spep . When I went back consultant said needs to be brought back in 6 months. Then I receive a referral to see a multiple myeloma specialist which scared me . Apparently I am being streamlined. I emailed to query and consultant phoned me to say obviously having mgus .. this was first I had heard of this . The list of blood work ordered made me feel like this is now something I do need to take stock of. I had the light chain, spep , fbc, renal and liver bloods done today to see consultant next week. It’s scary but I know I will have to face this the rest if my life. I am lucky could be worse but it feels lonely like you shouldn’t make a big deal do I haven’t talked about it much !! I have in an off bone pain in feet back and hip. This could be down to being menopausal at 45. I’m trying to keep positive as I have two young boys . It does make you take stock!! It does feel like a limbo disease!!
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A wonderful myeloma researcher at Mayo once told us that not everyone who has MGUS gets myeloma, but every person who has myeloma had MGUS first.
The tests that you are doing now are the typical tests that husband had for the first few years for monitoring, and then decisions on treatment when necessary.
I just try and not get ahead of the tests. It is easy to go down the rabbit hole, especially on the internet. There is really good news in myeloma, firstly if you are transitioning to myeloma now or in the future, it will be caught early because of the monitoring. Also about 16 years ago there was transplant, melphalan, or velcade or revlomid with dexamethasone. Today there is a trunk full of treatments to treat myeloma.
Have you been reading on the in the international myeloma foundation site yet?
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7 Reactions@orla Welcome to Mayo Clinic Connect. I echo what @auntieoakley said. And add the precaution that while there are seemingly so many types of treatments, what will work for you might not be the same that will work for someone else. And it might take some experimentation to get the right-for-you plan in place. There is lots to learn, definitely!
Ginger
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4 Reactions@orla. Hello, I am also new here! I just got diagnosed with MGUS. How has your journey gone so far? Do you have any more answers?
Hi, apparently it is your light chain ratio that is important. We could live with this and never become anything. Just don’t overthink it. Live your life like normal. It’s non symptomatic. Keep ur blood appointments and get your results. My protein is always increasing but still within normal limits. I was told if it increases again I will need to get a bone marrow test. I’m feeling good and I’m thinking of it as nothing being honest. It could be nothing and if I worry I have wasted precious time unnecessarily. How are you doing what has your journey been like??
@orla hi Orla. Thanks for messaging back! I’m curious, do you know what your numbers are? My protein band was 2 g/L or .2 g/dl which the hematologist told me is quite low. I’m type igG lambda and my free lite chains were normal (.7). My igM was just above normal but labeled as high at 2.56 g/L but my igA and igG were within normal range. I had a clear bone scan and he just told me we’d retest in 6 months. I’m not sure if I should just keep living my normal life as if this didn’t happen and just do the labs in 6 months or if I should be making changes to my diet such as adopting a plant based diet and limiting my alcohol intake (I like to enjoy a few glasses of wine now and then). I feel worried to wait 6 months incase things get worse over that time period. Have you made any changes at all? How many times have you gone for labs and have your numbers stayed the same? Thank you, I appreciate any insight 🙂