Newly diagnosed with MGUS

After several weeks of tests due to raised paraproteins I have eventually been diagnosed with MGUS.

The consultant said due to my age and the fact that my igG lambda levels are higher than he expected to be benign I’m going to be closely monitored. But rather than feeling I dodged the bullet I’m now worrying about it developing into myeloma.

I mean I have absolutely no luck so should this be any different!!

I know logically that most people live with MGUS for many many years without any changes but I’m finding hard not to think it’s waiting for the inevitable.

Anyway I’m just feeling a bit lost and emotional about the whole rollercoaster of the last month and needed to get it out hopefully where someone may understand and be able to give me a reality check.

Thanks in advance x

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Hi @Clairelou, a very warm welcome to our community forum. I am not going to give you a reality check because, personally, I think all the thoughts and feelings you are having are completely natural and exactly what I had at diagnosis. I remember coming home and writing my will and funeral music. You have had a tremendous shock, hence the rollercoaster. It is not uncommon to be closely monitored, it is commonly called ‘watch and wait’ or ‘active monitoring’.
We are here to support you and you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk if you need to talk to someone.
Please keep posting and be kind to yourself.

Welcome to the forum @Clairelou I’m glad you found it. I’m so sorry to hear how worried you’re feeling since your diagnosis of MGUS. It’s totally understandable that you’re feeling emotional at the moment, I imagine it’s a lot to process.

You might have already read through it but here is our information on MGUS and we also have a downloadable fact sheet here. It talks through generally, what MGUS is and the sorts of things to look out for, as well as what happens at appointments.
@Clairelou if you want to chat this through with us over the phone, at any point, please do give us a call on 0808 2080 888. It’s free and confidential.

Really glad you found this forum and I do hope it can offer some support to you at this time.
How are you feeling today?

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Thankyou Erica and Alice for your kind responses. It is comforting to know I’m not alone in my feelings

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There are a few people with an MGUS diagnosis on this forum so I hope they will see your post and perhaps share their experiences. (You can search for/join in the past MGUS conversations using the search tool at the top).
We’re only a phone call away if you want to talk it through!

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Hi @Clairelou. I missed this post so just wanted to welcome you. The early days after the initial diagnosis can just be overwhelming. I just wondered how you were doing?

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Hi’ and welcome Clairelou, like yourself I too have a diagnosis of IgG lambda paraprotein and remain on Watch and Wait. I regularly read through posts on this support group as it allows me to not feel quite so isolated even though I find it difficult to openly share and participate in posts being a very private individual. I can relate to what you have said and I’m glad that you have found Blood Cancer UK and its Forum.

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Hi @Shaka. I hope you are well. Sometimes just reading about others experiences is enough to help isn’t it. I completely understand how difficult it can be to share. That’s the good thing about this forum; you can share as little or as much as you want to. I hope you are well? I know I’ve felt more isolated at times during lockdown X

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Welcome @Clairelou. I can only imagine how you must feel. You must be very anxious and medical staff whilst well meaning can’t always empathise with how you are feeling. Do check in here anytime that you need to talk. I’ve got Myeloma but I didn’t know about it until it was quite far progressed as I didn’t realise that I had the symptoms, there was always another explanation for what I experienced. I’d never heard of Myeloma either when a doctor told me that I’d got it so had to walk through a fog of ignorance before my life settled down. I do hope there’s a positive outcome to all of this for you but in any case there are lots of people here to offload how you are feeling in a safe place. Your medical team will be able to answer any technical questions, but we can give you some personal perspective. Take care and try not to worry too much.

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Wow you are DEFINITELY not alone. I’m not even fully diagnosed with MGUS as I have hematology follow up tomorrow. A week ago I was told by rheumatologist that I had a “low concentration” of igm kappa protein in blood- all other serum levels in normal range. I don’t even know what “low” means. 1 google is all it took. I can’t eat and I look at my 2 young girls and all I think is I don’t want to miss out in them- and I don’t want them to miss out on a mom. I’ve never felt so sad and helpless in my life. The fear of everything unknown is extremely strong.

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Good morning @Clovy14 and welcome to the forum. I’m so glad you posted. I think we all remember that initial panic; it really is an anxious time and your mind just goes crazy with all those thoughts and fears. My children were definitely at the forefront of my mind. It’s all totally normal. Have you got a good support group around you? It’s so important to look after yourself. The support line is always there if you need them. Will be thinking of you tomorrow. Please let us know how you get on, but like I said, please look after yourself today and keep
posting if you need to. There is always someone here to listen x

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Hi @Clovy14, a great big welcome to our forum. When I read your post that feeling of fear and anxiety came straight back to me and into my stomach. I was diagnosed with blood cancer 16 years ago and I can remember coming home and immediately writing my will and music for my funeral. It sounded so, so scary and that was before google really took off.
Those feelings still come back today before, during and after medical appointments. I think what I am trying to say is that I think your feelings are normal and we are here to support you and the support line link has been given to you by @Nichola75.
Please let us know how you get on at your appointment and try to have something to eat to keep your strength up. Take care.

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Gosh @Clovy14 I am so sorry to hear how much worry and uncertainty you’re experiencing at the moment it sounds so tough. May I ask how your haematology follow up went?

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Wow I can’t believe your responses! So grateful! I didn’t even know they were here u til I stumbled upon another post! THANK YOU ALL!

The appointment was ok- he was very confident that my levels were so low and Google is NOT my friend (of course I know this!) … he wanted PET scan and 24 hour urine test- PET denied by insurance which makes no sense… and urine came back normal. Had a bone survey which looked good. BUT I still have tons of anxiety knowing “something isn’t right in my body”… I gave such awful health anxiety which led me on this path to “clear my mind” and help me relax and all this has done is make it worse. I’m grateful for the good results for now- and I wish them in everyone. I literally cannot get bad thoughts of worry out of my head. I am obviously not a very strong person. I wish I had 1/4 of the strength I see on this site.

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Hi @Clovy14, yes, divorce Google is perhaps good advice. I think you are an extremely strong person to post on this site and be so honest about your feelings. High levels of worry and anxiety are horrible feelings. I definitely think my anxiety levels have raised during lockdown and then really rise further at the least thing.
Why do I focus on the one thing that might seem negative and not on the many positive things ???
I know I can be honest about what is really going on for me and others will understand on this forum.
Strength in supporting each other I say. We are here to support each other through Covid times and beyond.
Please keep telling us how you are.

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Hi @Clovy14, me again, if you would like to talk to someone you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk, take care.

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@Clovy14. Hi there. Please don’t be hard on yourself and think that you are weak or that everyone else here is stronger than you! You are going through an incredibly difficult time and actually it shows bravery and courage to express your feelings and emotions. It is all too easy to wear a mask and pretend you are fine, but the braver thing to do is to be real. Did you know the word courage is derived from the word heart? To share your heart is a courageous thing to do so please be encouraged and let us know how you are doing. Warm thoughts and wishes to you and your family. Willow

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I am definitely one for thinking about things too much and sometimes it’s worse than others. That doesn’t make you weak, not at all X

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That’s nice of you to say- I honestly feel fine writing feelings here as you all are so warm and helpful. I almost feel guilty posting because I am in a spot that seems “better” than many here… I’ve only talked to Hubbie who thinks I should be fine but doesn’t get what’s goin in in my head. Best friend knows some but that’s it. I need somewhere! Lol… it’s just too much. I have major health anxiety anyway so it’s just not a place my mind needs to go. YES- I like the divorce google term… I’ve been good lol I promise.

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Sure feels weak!! Should I be getting alerts to responses? I love reading them but it’s always so long after you guys post!

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