Hi. A bit scared of doing this.
Been diagnosed with high risk MGUS a year ago and on 3 monthly checks. I’m 43 so have been told that it’s fairly inevitable that it will turn into myeloma at some point given my levels. Struggling to get my head around it and to be able to talk to my family about it. Put my head in the sand for a year but this is my first attempt to reach out.
Hope to have friendly responses! I’m a bit lost with all the research I’ve done.
Oh @Chris12345 a really great big welcome and thanks so much for having the courage to post when you were feeling scared. Perhaps putting our heads in the sand is a self protective mechanism.
What you must have been going through over the last year. I know I felt so isolated when I was diagnosed, I thought I was the only person in the world.
This was 19 yrs ago and I remember how long it took me to get my head around it.
I found it difficult to talk to family, friends and work. How could I explain what I did not understand myself…
I think we are a friendly, supportive group and you are now part of our forum family.
It does not seem to matter what diagnosis we have we often share the same thoughts, feeling and practicalities.
I find this is a safe space for me to say how it really is for me.
I find that searching the internet just confusing me. even more, now I just listen to my medical team and if in doubt ring the Blood Cancer UK support line on 0808 2080 888.
I write down all my questions before medical appointment as my mind goes blank when I go into a medical building. Sometimes I take someone with me as a support.
We are here for you so please keep on posting as I look forward to hearing more about you.
Be very kind to yourself
Thank you so much. I was scared to post as there must be so many people going through treatment now for blood cancer that having MGUS (and not knowing when it might happen) is, by comparison, a blessing in disguise.
I have been told it will be soon given levels and I am very lucky in that respect to have the time to plan / think / prepare. Not everyone has that. Yet being pre prepared is helpful, it’s also life changing.
Don’t know what I’m trying to say.
Hi @Chris12345 and a great big welcome to the forum. Posting was a really brave thing to do and I know you will find the forum such a good space to share how it really is for you.
So many of us on here are on active monitoring (including me for lymphoma) and are not receiving treatment at the moment. Each journey brings with it their own challenges. I particularly find being on active monitoring very very challenging. I feel very out of control and hate waiting to see what will happen as time goes on. It’s a real mental challenge and one which I’ve seeked support for many times over the last 6 years.
As @Erica said, I think we have all experienced that feeling of isolation and on here we really do understand what you are going through. @Erica has given you the support line number which is so great if you just want to talk things through.
I learnt pretty quickly that comparing my journey with others had a real detrimental effect. Every journey is different but we all have a shared understand of the challenges we face.
I’m so glad you found us, and please, give yourself a break. It’s ok to feel how you are X
Thanks so much Nichola. Was worried I’d get no replies.
X
That will never happen X
Thanks so much. Have a good night.
Dear @Chris12345
Welcome to the forum and it is really good that you found the strength to post. As you have seen already, our forum family are so supportive, informative and have a huge capacity to listen.
As @Erica mentioned the support services team are also here for you if you do want to talk Blood cancer information and support by phone and email | Blood Cancer UK and we do also work on the forum so please do let us know if you need us in any way that suits you.
In terms of research I would suggest you stick to the most reliable information. regarding MGUS, we would suggest our webpages Monoclonal gammopathy of undetermined significance (MGUS) | Blood Cancer UK and those of colleagues at Myeloma UK MGUS - Myeloma UK. I would recommended downloading the MGUS leaflet and diary at the bottom of the page.
I do hope this helps and do keep in touch as we are all here for you.
Kind regards
Gemma
Hello@Chris12345,welcome to the forum its a good place to be when you are needing the support of others and I echo the replies of @Erica @Nichola75 and @GemmaBloodCancerUK
I have MGUS IgG kappa and I am on 4 monthly monitoring .I have just got over the hurdle of the last blood results in January so looking forward to some respite of "nattering "my brain.
I am sorry to hear that you are anticipating a shift on to the next level there must have been some tests to show.
I can understand what you say and you are so young to have this worry.
@Coastgirl posted a very good link on psychological well being and Myeloma,from www.myeloma.org.uk
I listened to it and can highly recommend it and could relate to what was said.(thank you @Coastgirl )
There is also a video talk on MGUS
I was sent an MGUS diary from Myelom UK to record blood results and that is helpful.
The BCUK web site have info on how to look after yourself and I use the 10 minute breathing meditation every day when i’m home .
Its a lot to take in so I hope you will keep posting and let us know how you get on .
Hi Chris…its timeto let people know whats going on…i see in a later post you say your diagnosis is a blessing in disguise…i understand your point i feel the same way about my illness.
There are folk alot worse than us syndrome.
That said i feel pretty crappy at times…i need support and get down at times.
I still work and remain ppsitive but the fact remains that anyone under the Blood Cancer banner is going to feel rough both mentally and physically at numerous times.
Keeping all that inside you is not healthy and of course you wont need support all the time but make sure you get it at times in need.
All the best…Lee
Hi @Chris12345,
Welcome to the forum, there are quite a few of us here that have MGUS.
Well done for talking your first step into reaching out. Having MGUS and being on watch and wait, is stressful. Suddenly your life has acquired a ticking timebomb without a timer so when never knows if and when it will detonate. The advantage of watch and wait is that progression will be spotted earlier and treatment started.
I told my family when the rogue paraprotein was first found. It is now a year on and fortunately, for me, paraproteins levels have remained low.
Take care of yourself
Best wishes
Helen
@Chris12345 hello. I was told at end Jan I have MGUS. My doc told me over a very poor phone line! The first couple of weeks I waited around for the info to come through post. It didn’t. So I looked on line and found this, which has been very informative. I feel a bit of a fraud; all stressed out about something that may never turn into something to be treated. However I don’t know my numbers and finally today reached out to the doctors for what they know. I’m due another blood test in May. I told my husband a couple of days after my doc called. My husband has been very dismissive and behaves as though I haven’t said anything. After a few weeks I told my mum and dad. They were full of questions so I gave them the link to the MGUS info. That calmed them down. I’m 47. I sent the info to my boss just before I went on leave for a week. I couldn’t face talking about it in person. He called on MS Teams this morning and asked how I was doing. I said I was trying to not think about it. Carrying on as though I didn’t know, because it may never become a problem. He was encouraging and said he thought that was a good way to look at it.
I hope my ramble helps you.
Thanks so much Erica. I really appreciate it.
Thank you for taking the time to reply Gemma. I really appreciate it,
Thank you very much for replying. I have been moved to 3 monthly from 4 monthly after my last set of results. I don’t know about you but I can go through weeks of being rationale / practical and almost feeling that I am very lucky to have found this out now and have time to prepare, and then other times I feel really isolated. I’ve told my wife a year ago but tried to dull it down and not really told her how worried I am. In my opinion there is no point in me worrying other family members with something that may not transpire for years to come. Thanks very much for replying,
Yeah I get that and it makes sense. I can’t help but worry that I am being selfish telling other family members (just to make me feel better) when it may be some time before anything happens. I hope that makes sense. Thanks Lee.
Thanks Helen and I am really pleased your levels are remaining low. I’ve just been moved from 4 monthly to 3 monthly but more as a result in change in consultant than any massive change in levels. I tend to feel a lot better for a few weeks after results and then work myself up leading up to the next lot. I’m rubbish at talking about it and don’t want to burden / worry other people in my family just to make me feel better. Hence my first post on here. Thanks so much for replying and best wishes.
Thank you for replying Zoom. I understand completely about feeling like a bit of a fraud. It’s a very strange feeling. Feel lucky sometimes that I have found this out now (before it develops without me knowing) but it’s a bit of a double edged sword in that I feel sometimes ignorance is bliss. I’m glad your boss is being supportive and wish you all the best.
Would anyone know if regular minor nose bleeds is a feature of Mgus? Other possibilities going through my mind is some post Covid thingie or new blood pressure medication (Amlopodine).
I have been having them on a daily basis over the last few weeks. I have seen a GP who has made a referral to ENT but did no examination. I also visited a NHS urgent care centre who prescribed an antibiotic ointment but again no proper examination due to equipment failure. The UCC suggested if I had further problems to go to A+E-but I am hesitant. A few weeks ago I did have a bleed after a tooth extraction and was sent A+E by nhs111. A+E were brilliant but initially diverted me to the Urgent Care Centre who sent me back.
Thanks
Helen
Hi @helenfwallace please do let us know what the ENT say about your nose bleeds.
It might be worth telling your CNS (Clinical Nurse Specialist), if you have one, or whoever prescribed you the Amlopodine.
If it were me I would be worrying all the time that my nose was going to bleed.
Be kind to yourself