Mum has smouldering Myeloma just need to talk

Hi everyone,

My mum got diagnosed a little while ago now with smouldering myeloma. She hasnt even noticed it, it was randomly picked up on a blood test. She has recently been sleep a lot, which she thinks is due to med changes all though its been ages since then and actually made her more energised! Shes also been finding it harder to walk up the stairs, saying its the hip and back, which was from when she was younger, but not played up this much and as bad as this before!

Shes recieved a letter about her blood test and a physical exam from the doctor, could this be related, could this be her levels increasing, im so worried, dont want to make her feel like shes losing her independence either, but i just needed to ask people who have been or are going through this what i should be looking for and if these are signs of increasing levels as shes still in the watching stage xxx


Hi and sorry to hear about your mom.
I had mguss for 3 years and had 3 monthly bloods.
The change came for me with rib pain in October last year which confirmed myeloma. From what i was told the pain will be in the large bone ie ,shoulders, ribs,spine and hips.
Hope this helps a little and take care.


Hi @MummaB a great big welcome and I am so glad that you have found us.
I can hear what a caring, but anxious person you are.
Perhaps your mum could write down all her symptoms, how they are feeling different, their severity and the impact that they are having on her life.
If she has an appointment coming up soon she can talk them through then, if she hasn’t then she could talk them through with her CNS (Clinical Nurse Specialist), if she has one, her consultant or GP.
The reason I am saying this is that they know your mum’s medical history, as you say there have been med changes and at least one symptom is pre-existing.
How are you doing being so caring, but helpless, it can be exhausting?
We are here for you both and if you would like to talk to someone the Blood Cancer UK support line is there for you. I will copy your post to the Blood Cancer nurse advisors for you @BloodCancerUK_Nurses. There is also some information on the Blood Cancer UK website.
Be kind to yourselves and please keep posting


Hi @MummaB welcome to this forum. It’s so understandable you’re feeling so worried, I’m sorry you’re going through what sounds like a tough time. If you might find it useful, please do give us a call on our support line (0808 2080 888), it’s free and confidential. You mention that your mum received a letter about blood test and physical exam - was this from her myeloma team? In case it can be useful at all, here’s some info around what check ups look like for smouldering myeloma - Watch and wait | Blood Cancer UK
Check-ups for asymptomatic (or ‘smouldering’) myeloma

People on watch and wait for asymptomatic myeloma are usually seen every three months.

Your doctor will check for signs or symptoms that suggest your condition might be progressing or developing into myeloma. This usually involves tests to check your full blood count, measure the amount of calcium in your blood, detect whether there are any paraproteins or free light chains in your blood, and to see how well your kidneys are working.

It’s really important that your mum makes her haematology team aware of what she’s experiencing so they can get to the bottom of whether it is the myeloma or something else. As you may know, your mum doesn’t have to wait until her appointments to raise this with them.
I do hope you’re ok - please do give us a shout if you want to talk any of this through over the phone.


Hi @MummaB it’s so understandable that you feel the way that you do. I was diagnosed with full blown Myeloma over four years ago without an MGUS stage (or at least one that I was aware of). For me it was a very severe back pain which eventually fractured after being put under pressure. I’d had bone pains of sorts off and on over the previous two years but these were played down by my doctor and I even had trouble getting them to take notice of the severe back pain. I hope that things go ok with your mom and even if it’s the worst news, I know that you will be there to support her and be a great comfort.


Good Morning @MummaB

I just wanted to check in with you to see how things are.
How is Mum at the moment? Did you both get chance to speak to her Haematology team?
How are you coping too?
Hopefully Mum had blood tests taken and the physical exam and that has given you some answers to her sleepiness and mobility difficulties.
Please do call us if you wish to discuss anything or need any support: 0808 2080 888

Take care, Heidi.