Dear Jill and all,

So sorry to bring bad news to the forum but I wanted to let you all know that my 77 year old Mum passed away last week, after a brave 6.5 year battle with myeloma.  I think, for her it was too late for the pomolidamide as she was deteriorating fast. I cannot say enough praise about the care my Mum received on the NHS, both in…[Read more]

Hi Jill

Thanks for the update and I am really pleased to hear your Mum is doing well on CDT again.

We have had a very challenging few weeks with my Mum (aged 77 now and going into her 7th year with the disease). The Velcade was not working and giving her nasty side-effects. She’s in hospital again at the moment and they have very recently put he…[Read more]

Hello Graham and Laura

Thank you for your responses.

Graham – sorry to hear about your kidney cancer, wonderful that you managed to beat that. I hope you also will not need treatment for the myeloma any time soon.

I know what you mean about screening tests that may blight people’s lives but an alternative philosophy may be that knowledge is…[Read more]

Hello again and thank you so much for all your most helpful responses. It would seem then that some sort of crisis precedes testing for myeloma/smouldering myeloma/MGUS in the majority of cases; and I also note other people in the forum who say they were diagnosed from “routine” blood tests – although I was not aware that the NHS carries these…[Read more]

Hello again

Eve – I know what you mean about enjoying every day but my Mum has been too ill to enjoy life at all over the last few weeks. I wish your hubby well with his CDV and I hope he is doing well on the treatment.

Jill -thanks for sharing about your Mum’s journey which sounds similar to my Mums. It’s ironic isn’t it that without the…[Read more]

Thank you again Tom and San for your replies. It’s very good to talk with people who have first hand experience of the disease, either as patients or carers; I think the majority of people do not really understand what myeloma is all about and the need for repeat treatments, which I think does single it out from many other cancers that are still…[Read more]

Hi Tom

How kind of you to reply….I’ve read some of your other posts and you always seem so positive.  Good luck with the Velcade and the SCT.

I can’t help but wonder if they had offered my Mum an SCT 6 years ago whether she would have fared better but that is something we will never know I’m afraid. I did question it at the time but her…[Read more]

Hi San

Thanks for your reply.  I’m not sure why my first post has lots of redundant text in it, so thanks for persevering with it.  Yes, it’s been a tough time with Mum, particularly over the last year or so. You’re right, quality of life is so important and she does not have that at the moment.  I read your other posts regarding your Mum and I…[Read more]