I have recently been told I have high risk smouldering myeloma. I have been told that I will have regular blood tests to check.
I have noticed recently that Ihave been short of breath and feeling extremely tired but my consultant didnt comment just asked about back pain.
Does this automatically change to myelomaor can it stay as it is, feeling worried
Hi @Glennie
My diagnosis was another cancer called Myelofibrosis so not able to offer a perspective for you.
There are however many Myeloma diagnosis individuals on the forum.
The @BloodCancerUK-SupportTeam and the @BloodCancerUK_Nurses are great at offering advice and support as are the wonderful Forum Volunteers.
@Glennie it can stay as it is, I’m recently diagnosed with. I say recently but it was December, never got to be Monoclonal gammopathy of unknown significance ('MGUS') or smouldering, you may never progress, but if you do, they are on it fast and you will start treatment fairly quickly after all the tests, as I keep getting told, it is uncurable but it is treatable, and better treatments are coming along all the time, theta are a few If us currently on a trial @Spangleystar and doing our bit to help the future , keep talking to us in here, we will all support you eith any questions to have
Hi @Glennie
I’m sorry to hear this, what a worrying time for you. Have they booked you in for MRIs or CTs because they should look for bone marrow changes and lesions as they can also contribute to the diagnosis of myeloma.
Like Byrnebaby I was diagnosed with myeloma so can’t offer my experience on smouldering, but it was a confusing time - and I really just wanted straight answers. With that in mind I wanted to check if you’ve seen this? Smouldering myeloma | Blood Cancer UK
DuncanB has tagged the nurses and forum volunteers and you will likely get further responses as this is an active forum full of people keen to support each other. Don’t suffer in silence we’re here for you xx
Thankyou, i guess its a wait and see, consultant said she was watching the plasma cells.
Patience isnt easy when you are worried but i will have to be patient. Every new twinge will make me think its progressing!!
Here is a great resource from myeloma uk
Myeloma uk also do a patient diary
It’s great that your are being monitored
My myeloma was found after being admitted for a gall bladder infection
My myeloma had been active damaging bones for around 6-8 months causing kidney issues and I wasn’t in the greatest of ways
9 years on I’m still here 
Unfortunately @Glennie thats the nature of this beast even when diagnised and in treatment, we have to actively monitor our symptoms for life, but you know, you might never turn to active, you may simmer for a long long time, 
I won’t say don’t worry , because we all do? And the gang here will tell you I’m the worst for it, just try and get through each apppintment, each one coukd be actually wiping out your worries 
Thankyou, its nice to not feel alone in this. Consultant seems to think it will evolveso its wait and see. It doesnt seem fair because i beat cervical cancer when i was 35 and to have a second threat now . I guess worrying doesnt make it any better. X
@Glennie im sorry you’ve been through this before,that’s awful BUT can I tell you, go with your emotions, ride that’s wave, , we are human, we are going to worry no matter what anyone says, I think the worst thing is this’ you’re so brave, you’re a warrior attitude’ cos it’s no, I’m a mum and I’m fighting for my life I want to see my grown-up kids get married and have kids, and I want the future I planned with my hubby, there is a grief to this IF you do become MM, there really is, but I hope you can work through it, you don’t have to be strong or brave, just be human 
I was only diagnised in December xx so I’m still riding it, and I’m absolutely peed off and angry at the thought of my future being changed xx we are all here , some are further on in their journey, me and spangley are starting out, you aren’t there yet, and hopefully won’t be x
Bless your heart @Glennie - keep a symptom log.
Bone pain from Myeloma is very hard to describe until you’ve had it (accompanied with mri/ct diagnosis) you are previously only likely to have had muscular or maybe disc related pains and it’s very easy to assume (pre-diagnosis) it’s that, even though it doesn’t feel right. The other thing I noticed was skeletal weakness, in that I couldn’t lift heavy things that I previously could without feeling like something was going to break. This turned out to be because of multiple lesions in my pelvis, spine and ribs, it was very good that I listened to my body as often the first sign for people is fractures and thankfully, although my lesions were large 5cm, no fractures had been caused.
This condition will give you a really good insight into your own body, you’ll develop distinctions between muscular and bone, until then every pain, weakness and anything that ‘just doesn’t feel right’ should get taken to the doctor.
There is a trial for smouldering myeloma for high risk, details and what to do if you’ve not been approached for it are at the bottom of the article:
👥 MODIFY Trial (For Smouldering Myeloma) Peer Support – Connect with Others
Stay connected and make sure you are looking after yourself. Doing the things that bring you joy will help keep the worries at bay xx
Thankyou for your support, I am not brave really but unlike you I have seen my children grow and my grandchildren have arrived so i am lucky really. Just want to see them all get a bit older yet before my time is up. You have the right attitude, you will see them grow up. Take care.
Thankyou for the information, its great to hear a description from someone who has suffered the pains etc. I do feel a lot weakerbut could be in my mind, every little extra pain causes worry.
I will have a look at the trial, it has not been mentioned to me yet and no mri/ct scans so maybe that is a good thing.
I have a great hobby which I can loose myself in. Its the quiet moments when the brain works overtime !,
Once again thankyou
Dear @Glennie
Welcome to our forum. I am sorry to hear about your recent diagnosis of high risk smouldering myeloma. It is a very difficult time for you and understandable that you are worried.
I can see that you have already received some wonderful support and resources from our lovely forum members. I just wanted to add that if the nurses can support you in any way or it would be helpful to talk things through, please do not hesitant to contact our confidential support line on 0808 2080 888.
Kind regards
Fiona (support services nurse)
Hi @Glennie, I was diagnosed with High-Risk SMM in June 2024, so approaching the 2-year mark. My numbers have been stable since diagnosis and i’m generally fit and well, living life as before. The main burden for me is psychological. Living from blood test to blood test and the way my anxiety builds as the 3 month mark approaches each time is difficult to manage.
Even though there’s no guarantee that patients with this diagnosis will ever progress, My state of mind was a major factor in my decision to join the MODIFY trial at UCLH. I started last week and so far so good, with manageable side-effects. It does feel better doing something proactive instead of waiting. Plus, there’s the hope that patients in the future will benefit from the research.
Keep well and Chin up!
Thankyou for your reply. Did your consultant offer the trial or did you put yourself forward? No one apart from this forum has mentioned it.
I agree the blood test and waiting is very stressful. I to am able to carry on with life but its like i have this big cloud over me. I am fairly new to this so hopefully I will chill out soon.
Good luck with the trial and hope all goes well
I started off under the care of my local hospital but did a LOT of research and discovered the MacMillan Cancer Centre at UCLH. I asked my consultant to refer me to another research only trial but UCLH contacted me and asked if I’d like to come under their care.
They’re a centre of excellence so it was a no-brainier. Once there, they asked if I would consider medical trials to which I said yes, and so here we are.
So, short answer is, don’t assume your consultant will suggest clinical trials to you, unless you’re somewhere like UCLH
Thankyou, thats good information i will look into this.