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.

[Jackoh]

It wasn’t negative. It was a considered reply which you obviously gave much thought to. All the more so as you have just been given this diagnosis. All the very best to you for the future. X💐

[Numptybrain]

You are going through probably the most difficult time in your life, it’s definitely not a negative post you are simply telling it as it is. I wish doctors would to be honest as they always pussy foot around. I really hope you the that the future can bring.

Take care

Wendy xx

[MamaBeagle]

Definitely not a negative post in spite of your having received a diagnosis you would not have wished for. Best wishes for the future💐

[Gimme]

I don't have anything useful to say, just that am sorry that you are having to go through all that on top of the PMR. I can imagine that those additional appointments are tough to deal with when you are already feeling under par. Wishing you all the best going forward.

[Purpleprimate]

Just yesterday I had the report back of my spine MRI. It said I should be checked for Myloma & seeing your post has made me quite worried.

My accountant or the guy that does my accounts told me recently he had been given a new 'experimental' treatment for blood cancer, I think he said it was at the Hammersmith Hospital, London. He says it has worked v well. I had been completely unaware of his diagnosis until he mentioned it.

Take care & I hope your treatment is working well. A cancer diagnosis is very scary, I feel for you.

[Ladyhillingdon in reply to Purpleprimate]

Hopefully you will get referred quickly where they can investigate further?

Thank you for your good wishes to me ; this diagnosis is the start of another journey for me , I am only just getting used to living with PMR and managing pred !

[Hulotsholiday]

I felt your post was honest and helpful. I’m sorry to hear of your diagnosis and I’m sure I’m not alone in appreciating the time and thought that you took to give such a difficult update. I wish you well on your journey. 🌻🌻

[Zebedee44]

I am so sorry to read of this development in your health and understand your distress. Results of my blood tests on Monday appeared yesterday afternoon in my “patients know best” app and indicated anomalies which filled me with fear. I was in a pathetic state when I rang my GP surgery and asked for a call back from my doctor, far worse when the receptionist said it would be Friday!

My lovely doctor did call me yesterday afternoon and was very reassuring, but I am still devastated to be dealing with another alarming medical condition on top of PMR and a pituitary tumour. He was sure it was MGUS and I am taking courage from that less sinister diagnosis until the further blood tests are completed.

I live alone and find it hard to share my medical misfortunes with my family and friends, it is always comforting to meet others in the same situation via this forum and gain knowledge and support from them. sending hugs, Chrissie xxx

[Ladyhillingdon in reply to Zebedee44]

Hi ChriseeThank you for your message. I am truly sorry to hear you have worrying blood results, hope your GP gets you a quick referral. I see you live in East Sussex ?I live in Kent on the East Sussex border. I was referred to Haematology at Maidstone and now under Oncology there. I had to push for appointments with haematology when first referred, and even got discharged at one point due to a clerical error! I am lucky to have a good GP and feel supported by her. Like you I live alone and it’s difficult to stop oneself from overthinking everything. I hate to worry my three children ,two of which live in the north , the other is in Buxted, she works full time and has three teenage boys.She of course wants to help but I will never forget the look on her face only two weeks ago , when I was given the diagnosis.

Not sure what the protocol is for exchanging details but it would be nice to keep in touch maybe we live quite close?

Any how let me know how you get on? Gerryx

her.

[PMRpro Ambassador in reply to Ladyhillingdon]

You can use the Chat function to talk to each other privately - not even HU can see what you write there unless you give them permission - if you get spam or abusive contacts for example.

Tap on the name or avatar of the person you want to chat with and their profile comes up with a box to tap on to open a chat page, then follow the instructions.

[Ladyhillingdon in reply to PMRpro]

Thank you

[Dinahmite]

Oh Gosh. So sorry you are having to deal with this. It was an excellent post and I wish you all the best during such a difficult time.