I’ve been smouldering for 8 years. My pp is below 30 but my biopsy showed 15%. When my pp was at its highest (15) I was ill a lot, but the pp went down and now I don’t have any symptoms. Just the normal smoulder worries about progressing.

My consultant doesn’t like me being called a smoulderer since I’ve been stable so he keeps…[Read more]

Bella

Ps my twins are 5 now

I am so sorry to hear this, and my heart goes out to you and the family. I remember many of Outdoors Paul's post on here and on the under-50s pages – we won't forget him.

Bella x

28 is very young to get this. I was 37 when diagnosed, but I'm luckily still smouldering only. I joined the under 50s group so that I could get additional advice and support from others who have young kids. If you want to join us, please email Scotty s.hawkes@added-value.com We have a few other bloggers there.

Bella

Basically it is all in stages strting with MGUS, then SMM and finally MM; however only some get diagnosed early at MGUS or SMM stage.

Asymptomatic multiple myeloma is a bad term as it could mean SMM (lower levels compared to MM and no symptoms), or it could mean that the patient has levels normally seen…[Read more]

I'm also IgA, but not Bence Jones. Though I do take the FLC test now and then and my ratio is higher than normal but not by much. Have you had a bone marrow biopsy? I got too stressed about not knowing when I was first MGUS labelled and did the BMB which showed I was smouldering.

Bella

So you also experience variability in paraproteins. I don't get joined up appointments but my consultants are very aware of the other disease and the other consultant. My hospital has fast track for new RA cases – took 2-3 weeks I think, but I know they have this as a special thing.

Bella

I'm not new, but there have been a few recent discussions here about smouldering and one issue that came up was MM/SMM/MGUS in combination with rheumatoid arthritis.

I have SMM and RA – both diagnosed March 2008. I know that there are others out there with both and there is some research that have patients with both diseases. But there…[Read more]

If you email Scotty on s.hawkes@added-value.com she will send you an invite to the under-50s group.

Bella

Bella

I can't find anything in Bangor but Liverpool looks good. However, husband is not keen to move so will have think bit more before I decide whether to apply.

Bella

Am considering applying for a job in Bangor, but wonder about how good the MM care is there and also where it is located. Does anyone know? I have very good care both with hospital and GP now, so don't want to "trade down".

Bella

I'm also asymptomatic/smouldering (though at first they labelled me MGUS). I did consider curcumin, but the thought of that many pills extra was a bit much – I've got RA too and there are plenty of pills a day for that. Though at the moment my pp has dropped significantly and I think it is because of Humira (anti-TNF drug…[Read more]

Bella xxx

Like Debs I'm a smoldering kind a girl… I've looked at curcumin but am not sure whether the potential "down" effect it has been reported to have on paraproteins is a real one or not. I've got rheumatoid arthritis (just to add to my pleasures!) and after recently starting Humira (a biological anti-TNF drug) my paraproteins sank to the…[Read more]

Bella