I got my diagnosis yesterday of smouldering myeloma, I’m really not sure how I feel at the moment. I really thought it would be MGUS as my bloods are so good and as it turns out my CT scan showed no bone damage. My igA kappa numbers are 13 though and my consultant said anything over 10 is considered myeloma. Fingers crossed is stays smouldering for a long time to come. Wasn’t easy telling my mum or my children. Any advice or thoughts welcome.
Oh @Loopykat I cannot imagine how you felt yesterday and it is the most horrible thing telling family especially when you are trying to take it all in.
You seem to have a lot of medical knowledge.
Have you got a contact at the hospital that you can ask any questions you might have to set your mind at rest?
I expect you are a bit all over the place so perhaps just yourself some time, look after and be kind to yourself for a while and please let us know how you get on.
I’m really sorry to hear this, @Loopykat. You must have had a very difficult 24 hours, processing the news and telling those closest to you - both of those things are dreadfully hard to do. I hope you at least feel some relief in getting that initial telling behind you.
I was diagnosed with a different illness to the one even the consultants initially expected, too. It feels like an extra slap in the face; an extra nasty twist to the story, and it’s easy to then feel the bad news will just keep on coming. But it doesn’t always. But it does make that initial processing of all the shocks that little bit harder, so I hope you can take some time out for yourself, to let it all sink in.
I don’t know anything much about smouldering myeloma, but I’m sure others do here. However, I wsh you well as you come to terms with everything, and please do chat to us all here whenever you need a friend, or advice or support.
All the very best. X
Thank you for posting and for being so honest in your post. You will need time to digest this diagnosis so please do call us if you would like to talk: Blood cancer information and support by phone and email | Blood Cancer UK.
May I ask whether you have received information regarding your diagnosis and plan in terms of monitoring? I am hopeful that you have but if not we can send you through some information (I will add some to the end of this post). It is really great that you’ve talked to your family already, if you do need information for them please just ask and we can send some through.
I am sure you will gain lots of support from our amazing forum and if you do need to talk please do not hesitate to get in touch.
Smouldering myeloma and watch and wait | Blood Cancer UK
I’ve just been told I have blood cancer | Blood Cancer UK
Hi @Loopykat. Everybody has given such good advice already. Telling family and friends is so difficult and really takes it’s toll. You have so much to process and all I can say is take each day at a time. Your emotions will probably be up and down so just take care of yourself and do what you need to. We are all hear for you X
I don’t have experience of smouldering myeloma
Here’s the download from myeloma uk
As much as it’s hard telling family they can become your source of support and love.
Try and just live everyday and start doing the things you always wanted too rather waiting for the right time
Long may you smoulder and need no treatment
I have had smouldering myeloma for 5 years. I am on ‘watch & wait’ so I see the haematologist every 3-4 months. The only symptom I have is tiredness especially in the evening. I told my son fairly early on (he was 20 at the time). He was upset at the time and I told him I’d keep him posted if anything changed. He periodically asks me how I am but gets on with his life. The initial shock of diagnosis wears off after 5 years & I do my best to keep fit by exercising, staying away from UPF’s & carrying on life as normal. I do a couple of volunteering jobs and keep busy.
I have also joined a local support group in West Kent.
Take heart in the fact that the new treatments for MM are excellent and advancing all the time. Do your best to keep positive and cheerful. It helps a lot. Good luck with your journey. Suzanne
I was diagnosed with Smouldering Myeloma in 2017 and am still at this stage of Myeloma. I am still on watch and wait with blood tests every 3 months. My paraproteins at my last blood tests in March were 23. Back in 2017 they were at 14 which they stayed at for ages. My light chains are also slowly increasing. When I was first told I wasn’t sure how to feel but gradually I just got on with things . I have 2 grown up sons and they were obviously upset but once they understood it better and I said I would keep them informed of any changes they were okay. I still get stressed around blood test time but that is natural for anyone I think. The treatments for Myeloma are improving so I try to think positively that should I need to start treatment then I will be well looked after.
You will get your head round it but give yourself time to come to terms with it.
Hi @Sooz22 a welcome to our forum and I am glad that you have found a local support group as well.
I think trying to keep fit within the constraints we might have is a good idea too and trying to keep occupied is also good for our emotional well being.
Please keep posting and really look after yourself
Hi @Yvonne great to hear from you again and you seem to have a good philosophy for life.
I agree with your last 2 sentences, although I have another blood cancer, yes we all need time to get our heads round our diagnosis and treatments are improving all the time especially with the funding Blood Cancer UK provides for research and trials.
Look after yourself
New treatments regimes have come on since 2017 when I was diagnosed
There was no dara I believe it was in trial stage then and I was refractory to thalidamide so onto ESHAP
I have had the best results from DVD and I believe it’s now first line for newly diagnosed myeloma and it’s very tolerable
Your boys are right enjoy every day and do all the things you have been putting off
Once treatment starts it’s then relapse/remit
I get a bit of anxiety for bloods more so now I’m a year post second stem cell transplant
I was told mine may not last as long as my first but so far dara maintenance is keeping my
Protein/lightchains less than 2
Living with myeloma is doable
Hi@Yvonne,thats good to hear how you are getting on.
I am on 4 month blood tests with the MGUS and have now developed a light chain
and so now have an abnormal Kappa:Lambda ratio which puts me in low/intermediate risk
with a Free high Kappa 25.70
which is still only low compared to others,but it gave me a jolt at the time ,also my GP said i didnt need this testing again (i am confused)
I am interested to read that you were diagnosed in 2017 with Smouldering Myeloma with paraprotein 14.
My haematoligists guidelines are to be reffered with a paraprotein 20
.This leaves me wondering🤔 is it different for some.
I will probably plod on however but last IgG Kappa was12.40 so will have to wait till end of May,so im finding things to do to distract myself.
Take care and good to hear how you are
Thank you Erica. So important to keep positive even though difficult at times.
Hi I was diagnosed back In December. Went to the go for HRT treatment and had blood tests done
Result it was a huge shock to find I have myeloma after telling my close family that I would be having chemotherapy and could go on the trial
Now they have taken a step back and said I have smouldering myeloma and will have blood tests regularly fortnight and now have them every 8 weeks
I feel we need to stay positive and free from stress keep fit and eat healthy
Enjoy life as much as we can while we are able
All I can say is keep us all smouldering for many years we can beat this x
Gosh @Sarah63 it must have ben such a shock to you and your family.
Yes, may we keep being regularly monitored.
Look after yourself.