My cousin has been diagnosed with Myeloma and has been told its ‘smouldering’. Does anyone else have this diagnosis and can give me any helpful information on living with this? (I have AML so a totally different blood cancer.) We’ve got all the information from Bloodwise, Myeloma and Macmillan so its more info from people who can offer help from their own personal experience.
Also she’s been told she can’t claim any financial help as its not technically ‘cancer’??
Thanks
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Hi Anna, hopefully someone with lived experience will be able to share their experience. However, I would challenge whoever told her it isn’t a blood cancer, it’s an early form of myeloma and the plasma cells are present in the bone marrow and protein in the blood - but there are no symptoms typically associated with myeloma and so it doesn’t need treatment. It’s like watch and wait, essentially. CRUK discusses the stages quite well, https://www.cancerresearchuk.org/about-cancer/myeloma/stages.
She may find she doesn’t meet the threshold if she’s asymptomatic and currently well, but it shouldn’t be a matter of whether it’s a cancer or not (it is).
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Thanks Dawn,
I will forward this information on
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Hi
I was diagnosed with Smouldering Myeloma in September 2017 after having had MGUS for 3 years which is a pre-curser to Myeloma should it progress which mine has. I had another bone marrow biopsy which showed that the level of Myeloma cells had increased to over 10% and also increased paraproteins in my blood. My consultant has said it is ,as Dawn from Bloodwise says ,the early stages of Myeloma which, in my case, they expect to progress and should it become active and cause symptoms then treatment will be started. Until then I have blood tests every 3 months and have just had a full body MRI to check if anything happening with my bones. As far as my drs are concerned it is a cancer diagnosis. I think at this ‘watch and wait’ stage it’s difficult mentally as it’s a bit like ‘the sword of Damocles’ hanging over me. I have days when I don’t think about it but other days I can’t get it out if my mind. At the beginning it was all consuming trying to find out everything I could about it but I tend to just get any info now from Bloodwise or Myeloma UK. I have a Clinical Nurse Specialist who I can ring if I am worried about anything and I am being well monitored so I am happy with that. There’s also great support from Bloodwise and Myeloma UK.
I hope this helps.
Regards
Yvonne x
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Thank you so much Yvonne… this is really helpful, I will pass it on.
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Hi Anna,
You’re welcome. It does help to discuss with others who are going through a similar experience. I remember how daunting it all is at the beginning. I hope your cousin is okay and be encouraged that the fact it’s been diagnosed at the early smouldering stage means that as soon as anything changes then treatment can be started.
Take care
Yvonne x
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Hi Yvonne, you may be encouraged by this news story about nice approving a new drug regime for some newly diagnosed multiple myeloma patients. As you may be aware getting approval for new drugs in the uk is a very thorough process where the cost and effectiveness are balanced very carefully, so news like this should be spread far and wide in the multiple myeloma community. We need to act as a advocate for our disease as it rare in comparison to other kinds of cancer and this is my way of making a small contribution to keeping us all up to date with any breakthrough no matter how small. I hope you are well and enjoying the good days .
Best wishes Alfie.
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Hi Alfie,
Thank you for sharing this information. It is encouraging to see treatments coming through for us. Every little helps. As you say Myeloma is one of the rarer blood cancers and I certainly had never heard of it until my problems cropped up. I am keeping fairly well thanks. I recently had a full body MRI to see if anything has developed with my bones. I haven’t heard anything which I take as good news!! I hope you are keeping well too. As you say “enjoy the good days”
Take care
Best wishes
Yvonne x
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Yes I know how much it helps to share experiences from my own journey through AML. My cousin is doing ok although it is very early days for her, getting a cancer diagnosis, then being thrown into this world of tests, scans, etc appointments dealing with symptoms… there is so much to take in let alone the fact that you’ve got cancer. I think at the moment even though its at the smouldering stage she’s still reeling. As you and I know it takes time … thanks again
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Yes Alfie there are lots of new drugs being assessed at the moment and Bloodwise are doing some excellent research into Myeloma which is very encouraging
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How is your cousin doing @AnnaMam?
I had MUGS for over twenty years before it progressed to Myeloma 18 months ago, during those twenty years my paraproteins were at 6 - 8, so I think I am saying here is that it may be many years before progressions to full blown Myeloma, so just try to get on with your life and try not to worry to much.
Sensible advice from @AndyMeer. It’s very difficult I know and I’m sure that you think about it at least part of every day but it would be a shame to ruin your life and not make the most of the good times whilst you’ve got them.