Smouldering Myeloma – pain

[likka]

Hello everyone, I’m recently diagnosed with Smouldering Myeloma. My tests are all very positive. Watch & wait with 3 monthly checkups.

However I am in constant pain, my ankles in the morning are so sore I struggle to walk, throughout the day it’s my joints that ache, my elbows get so sore and weak at times I can’t lift things. My neck is constantly sore (left side) and I’m tired ALL the time.

My haematologist told me these are not symptoms of myeloma, he is talking about referring me to a rheumatologist.

Has anyone else had similar symptoms and could give me advice on questions I should ask? Websites I could look at for advice? or suggestions of what it may be? Is it linked to Myeloma?

I have had tests for rheumatoid arthritis and tissue disease, last year I had an ECG (for the breathlessness) all normal.

Any help would be greatly appreciated x

Kirsty x

[loopykat]

Hi Kirsty, welcome to the club! I’ve had my smouldering myeloma diagnosis for coming up to 2 years now and I’m very similar to you. My bloods are good and my haematologist said that the other symptoms I’m experiencing are not connected.

The reason I was diagnosed with smouldering myeloma was because I was on a pathway for a ME/chronic fatigue syndrome diagnosis and there were a few last tests they required before being referred to the clinic. I now have a ME/CFS diagnosis too, it may be worth looking into for yourself.

[likka]

Thankyou for your response, again similar to me. I was tested for so much, then they thought Lupus, during those tests a result flagged Myeloma.

I feel so deflated as I thought I had answers to the pain! But I will keep pushing on and hope I get answers.

Thanks again x

[leicslad]

hello to you all
i am 70 yrs old paraproteins 36 and bence-jones light chains. i have been smouldering now for 10yrs get occasional aches and pains which like youselves get told nothing to do with myeloma never the less still worrying. i am on 3mth watch and wait and annual pet scan for bone lesions. fatigue is an issue but if your tired rest. try not to get paranoid about aches and pains just look after chest infections. keep safe and well i am sure alternative is worse. be positive steve

[robinf]

Smouldering myeloma – I have smouldering myeloma (65), diagnosed in June 2023, paraproteins were at 32. Went for all the preliminary tests, endless weekly Blood tests, Bone marrow biopsy, full body MRI scan. My chenotherapy trearment had to begin in February2024 DVTD. This was a course of 4 cycles (4 wweks). I then on completion of this had to undergo my stem cell harvest which was in September 2024. Admitted to hospital (Kings College Hospital) in January 2025, underwent my SC transplant 14/01/25. The staff and nurses were superb. My consilidation trearment has begun 2 cycles. last chemo DVTD will be 21/05/25 will be my last Chemo treatment. I must than have a Bone Marrow biopsy to access the SC transplants result. I have been told that a SC transplant increases your odds of remission enormously. So I am praying for this. I have continious back pain if I stand or walk for mor than 30 minutes. My fatique is not too bad.

[bellawest]

Hi all, I live in an area with no Haematogists I’m high risk smouldering, 3 monthly bloods is anyone else in this position and is a specialist cancer nurse as good as a haematogist at deciphering tge numbers?

[rabbit]

Hi Bellawest,

Short answer: no, a cancer nurse (covering all cancers) is not as good as a haematologist (focussed on blood illnesses). Best is a myeloma specialist.

Having said that, if you post your blood test results here, we can try to figure out what is going on.

Regards
Rabbit

[bellawest]

Thankyou for that I will do that with my next results.my confidence gas been knocked a little as whoever I speak to doesn’t seem that concerned that there are no consultants

[bellawest]

I did read that there are now treatments for SMM that slow progression but I don’t know if that’s in this country yet and that is one of the problems with not being able to ask a specialist

[rabbit]

Hi Bellawest,

I can help on that one. Before a treatment is available to the general public, there are clinicals trials of it followed by an approvals process. No treatment for high risk smouldering is approved in the UK yet.

However, quoting AI “LINKER-SMM2 and MODIFY are clinical trials evaluating early intervention for smouldering myeloma that have active involvement or sites within the UK.
​Because standard NHS practice for smouldering myeloma is active monitoring (“watch and wait”), these trials represent key avenues for patients aiming to access advanced therapies early.
​1. LINKER-SMM2 Trial
​What it investigates: A Phase III study comparing the bispecific antibody linvoseltamab against the monoclonal antibody daratumumab in patients with high-risk smouldering myeloma.
​UK Status: It is active at select UK hospital sites (such as University Hospitals of Leicester, Royal Cornwall Hospital, and Norfolk and Norwich University Hospital, though participating sites can expand over time).
​2. MODIFY Trial
​What it investigates: A trial evaluating a combination therapy involving isatuximab, iberdomide, and dexamethasone specifically targeted as a treatment for smouldering myeloma.
​UK Status: It is open and recruiting at major UK centres, such as University College London Hospitals (UCLH), under leading UK myeloma investigators.”

Regards
Rabbit

[rabbit]

Hi Bellawest,

Whereabouts are you?

Regards
Rabbit

[bellawest]

Thankyou so much, I’m in the North East

[rabbit]

Hi Bellawest,

Back to our AI overlords 😀 on smouldering myeloma clinical trials:

“…clinical trials and research studies for myeloma do take place in North East England—most notably through major regional centers like the Freeman Hospital and the Sir Bobby Robson Clinical Trials Unit at the Newcastle upon Tyne Hospitals NHS Foundation Trust, which works in close collaboration with researchers at Newcastle University.”

Regards
Rabbit

[bellawest]

Thankyou for all the info that’s really informative

[najmah]

Hi Bella, whereabouts in the North East are you? I’m being treated at the Bobby Robson unit at the Freeman hospital in Newcastle and the consultants are excellent.

[Author]

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