Smouldering Myloma

[Ladyhillingdon]

I didn’t want to comment on Lindloo’s post about MGUS but my story has similarities.

During investigations last year2023 for PMR it was shown that I had paraprotein in my blood. I am lucky to have a very thorough GP . She was sceptical that I had PMR because ESR and CRP only slightly raised. However after referral to a rheumatologist a PMR diagnosis was made and I have been on pred for over twelve months. GP said she was releaved that it was PMR because she was worried I had bone cancer . However she referred me to a haematologist because of paraprotein and also low immunoglobulins . I had light chain blood test which revealed an imbalance. The rheumatologist spoke over phone and said she was sure this was MGUS but just to be finally sure , I was to have a Bone Marrow biopsy. I was called in to an urgent appointment two weeks ago and given the news, that I have Smouldering Myeloma, which is the early stage of blood cancer where it will be monitored with frequent blood tests . I am having a PET scan this Friday.

I have found the MyelomaUK charity has excellent information . The thing I have taken is that everyone’s Myeloma is individual to them and every patient is different.

It’s similar to being given the PMR diagnosis you will here anecdotal cases of someone’s friend or relative and what happened to them but it’s not your PMR.

I am already hearing similar stories from friends and relatives about Myeloma , I know people mean well and are trying to reassure.

I have read this back and I do sound very negative I ‘m sorry I am not intending to be especially not towards this forum and it’s contributing members. It’s hard being given a cancer diagnosis it is still very raw.

I was due to reduce my pred this week but in light of everything and the PET scan I will stay where I am on 7 mg.

[SnazzyD]

Well I thought this was really well put and I’m really sorry you’ve got this hanging over you. With all these things it’s a case of trying to take heart or advice from the commonalities of others’ experiences and knowing when to chalk things up to it being one’s own journey.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear your diagnosis, and glad you have found a forum that is helpful and supportive.. and no, your post is not negative - it’s realistic..

As you say others may have same disease /illness or may know someone who does, but at the end of the day your illness is your illness… and you have to deal with it the best way your can.

All the best 🌸

[SheffieldJane]

Sharing this difficult information could possibly help someone else. It can’t have been easy to word. Wishing you well with this new challenge. X

[PMRpro Ambassador]

That is a very good post - not negative but presenting things realistically which is what we always try to do too. Thank you very much for writing it - always hard at a new stage of diagnosis - and all the very best.

[Charlie1boy]

Very similar to my experience, which I described in my replies to lindloos post.

After a rather alarming start, during which they said I had five years to live, I was eventually told it was “smouldering “ Myeloma. As far as I can understand, it’s still smouldering, but they now call it MGUS, and no more was said about my possible lifespan!

I totally agree with your comments about the Myeloma Charity. Very helpful, and easy to understand.

Good luck.