I am on cycle 8 now ….last one and have some mouth soreness again no ulcers. Try Nystatin from your doc or hospital. I also find ice chipped and sucked works well. I have loads of ice with cold drinks and have to have hot drinks really hot. My taste is always up and down, I have real difficulty with taste and smell too. I have fizzy water and…[Read more]

Hi Susie So glad you are feeling more positive about the treatment and doing well on your third cycle. I agree the 8th day is often the worst but not too difficult once you know how to deal with the side effects.
Difficult to say about the referral as the consultant will want you to have the best possible treatment – it is worth discussing this…[Read more]

Hi Susie
Glad you are feeling more positive today – sorry you live so far from me, do try the macmillan nurses, I have a specialist nurse I can contact any time, He works at the Royal Liverpool and is part of the team. He is amazingly knowledgable and supportive on all sorts of levels not just the myeloma, but benefits, access to alternative…[Read more]

Hi Susie – hope all is going well with your treatment, I have just started cycle 7 and will go on to 8 cycles now as the ops are now 6.7 so my consultant is sure they will continue to drop. Yes I agree the side effects of treatment are a struggle but you will get through with help,support band a positive outlook. I try to concentrate on the good…[Read more]

Hi Susie
Just reading through a few post and found yours, I have relapsed Myeloma and am on cycle 6 od Velcade, cyclophosomide and dexamehtasone I am exhausted most days and have the side effects you mention. However to encourage you I had initial treatment 10 years ago with a stem cell transplant and I truly believe it gave me a good/better…[Read more]

Just reading your post I too have blurred eyes but can assure you it gets better after the treatment stops. Keep positive and keep smiling. I had CVAD and thalidomide 10 years ago and have just relapsed – am now on Velcade I am now cycle 6 and still responding well .