Hi all, feeling very overwhelmed, confused and uncertain! Have just been told I have smouldering myeloma so on watch and wait. Just wondering if anyone else on here is in the same position?
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Hi @Angel1968 I am so glad you have found us and had the courage to post.
Personally, I am not a medical person, feeling overwhelmed confused and uncertain and lots of other thoughts and emotions whizzing around sounds really natural to me.
For me it was a shock that I thought changed how I foresaw my life would be.
I hope others can share their experiences.
What I can say is it is not unusual for people with all different blood cancers to go onto a system called ‘watch and wait’ or ‘active monitoring’
I have actually been on watch and wait for 20 yrs and it means I have tests every 3 - 6 mths to see whether my results are fairly stable, although they do fluctuate.
My70th birthday was my best birthday ever.
My diagnosis has given me the opportunity to reassess my life and what I want to do and with whom. I have learnt to say ‘No’ and have given up commitments I was not really enjoying.
However it has taken a long time to get where I am now.
Now is your opportunity to write down all your fears, questions and practicalities for your medical contacts
If you would like to talk to someone the Blood Cancer UK support line is on 0808 2080 888.
Perhaps just give yourself time and be ever so kind to yourself and keep posting how you are doing and feeling, I look forward to hearing more about you.
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Thank you @Erica , that really helps! I think you are right to evaluate your life and I think I should do the same. Also to make notes on all my questions, sometimes when you are in the doctors office it all goes out the window and you think of things afterwards.
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Hi there @Angel1968
Been there, had got the T shirt. Well not quit so I might require a slapping!
40+ years ago I had Hodgkins Lymphoma and I’m still here.
12 years ago I was designated Monoclonal gammopathy of unknown significance (MGUS) B cell IgM and initially tagged Myloma.
2 years ago and I’m being treated for not MM but Waldenstroms Macroglobulinemia treated with current concept targeted therapy.
I know it might sound flipant but be strong and positive. With due respect question those treating you and glean all the positives available, and beware of Dr. Google.
Keep on line, good advice and support found here.
Things aren’t always curable but many are treatable.
Hope allgoes well.
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Thank you @Iain . Oh my, I didn’t realise there were so many different variations. That’s very helpful, thank you. I think that’s why I came on here as if you google it brings up so many frightening aspects. I wish you well, take care!
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Hi there
I’m going to link to myeloma uk smouldering myeloma
And the GP guide that may help you formulate your questions. Write them down as you go along
I’m living with myeloma 7 years now
I was probably Monoclonal gammopathy of unknown significance (MGUS) then smouldering but had no idea as I was diagnosed with active myeloma after being admitted for a gall bladder infection.
Like @Erica its made me re evaluate what is really important in my life and to enjoy each day as that’s the time most important the here and now.
Don’t save those special days today is special
I appreciate that’s easy to say at the start of your new journey.
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@2DB wow, that’s really helpful, thank you. I will definitely use that as I have no idea what my most recent bloods showed. Back in May, I was 20 paraprotein? I don’t know what it means. I have so many questions. I think my consultant is writing to me and my doctor so I should have info soon. Take care, and thank you!
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@Angel1968
I must emphasise I’m a patient and not a medically qualified person. Nor am I a Myloma clan member, but initially I was before being reclassified as Waldenström macroglobulinaemia (WM).
During my 10+ years of Monoclonal gammopathy of unknown significance (MGUS) monitoring >30 g/L paraprotein appeared the benchmark value the Haemotologist considered of great relevance.
That said I know that there are lots of other symptoms and clinical data used by those treating us in their diagnosis, deliberations and treatment regimes.
Hopefully, whatever the action level your condition is manageable if not curable,
Iain
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@Iain thank you. I appreciate that. I’m sure in time things will all sink in and I’ll learn about the aspects of it all. My consultant said things have come a long way and that treatment is much better now and he’s confident that I’ll get all the help I need when the time comes. I’m just struggling with all the terminology and the fact he said ‘it’s good news’ when I first went in? I suppose he means they’ll monitor it before it does any damage? I wish you well, take care and thank you again!
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@Angel1968 , happy to help. One of the keys is in the name - smouldering = slow = chronic.
It’s the acute ones that need the rapid attention.
You’ll soon get to grips with the terms and expectations.
Rgds
Iain
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Hiya
Treatment has come a long way since I was diagnosed with myeloma in 2017
You will be monitored closely with smouldering myeloma which is great news.
A lot of us find out we have myeloma when it’s been doing damage and out of control.
I probably had Monoclonal gammopathy of unknown significance (MGUS) and smouldering but it’s was never been picked up even when I had a cough I couldn’t get rid of and my neutrophils have always been low.
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