hiya Tom, only found out about it yesterday at my chest clinic appointment apparently it showed up on a ct scan that I had when I had pneumonia. Ive got to have another scan in April to see if its grown and then I have to have them repeated every 3 months for at least the next 2 years. Did the old googling thing and fright meself as you do – but…[Read more]

Hello there – I haven't been on here for a while but as a cat owner I just wanted to say that when I came home from my SCT in September 2010 my cat Kiwi was a god send. As visitors were very restricted she was my only company most of the day and sat by my side throughout. I am still (fingers crossed) in remission and yes I get endless infections…[Read more]

Morning David,

Not been on here for a while – glad your paraproteins are still low and hope they stay that way. I had my 3 month check a couple of weeks ago and the pps are still too low to quatify. Do you ever suffer from leg pain I find they keep me awake at night – I sweat a lot aswell but don't no if thats just coz I'm a laydeee!! Hope…[Read more]

Dear Bridget I'm crying as I write this I really, really hope you are ok. I will never forget your kindness when you came to see me at UCH on the day of my SCT – I haven't been on here much -too busy trying to do normal things and forget I've got this bloody illness. You are such a kind person and you knitted me my hats !!! Please keep fighting…[Read more]

Hello I haven't been on here for a while but was just reading other posts and thought how sad it is so many of us are living our lives with para proteins (I hate the word) wish I had never heard of it – sorry – I'm so glad that yours are coming down – Ive got my check up next week to find out if the little devils are creeping up again and if one…[Read more]

Hya Tom, I had about 9 sessions of Zometa before I had my transplant. Can't have it anymore coz I got osteonecrosis of the jaw – can you believe it only 3% chance of getting it and I had to be one of them !!!!! Half the trouble with this flippin illness are the side effects of the treatment. Never mind I'm still here and fighting. The only…[Read more]

Hello Tom – I haven't been on here for ages – for thems that don't no me I was born in 1955 (excellant vintage eh Tom !) and live in Chertsey in Surrey. I'm under my local hospital and UCLH and am 15 months post SCT and (fingers crossed) still treatment free and in remission. Last para protein was 7 which is fine. In cas its ages before I'm on…[Read more]

I'm seeing occ health on Tuesday – In September I managed to get my hours reduced to 20 per week (after applying in May) I had to wait until they could find some one to job share with me. I agree with you I think they want me out because at the meeting my manager kept emphasizing how stressful and pressurised my job is and perhaps I would be…[Read more]

Morning, Ive been with my employer for almost 21 years and stupidly didn't join the pension scheme . I turned 56 last birthday. If I could afford to walk away I would I just can't believe they are being so blinkered in their atitude. To make matters worse Ive now got another chest infection so tomorrow I will have to go to work ill and not do…[Read more]

Manuka Honey is supposed to be good for your immune system only trouble is the best ones are a bit expensive – about £10 a jar. Mind you Ive now got yet another chest infection so maybe its not much good after all !!!

I haven't been on here for ages coz my pc has been playing up – to all who might remember me hello and how are you all doing ? I had to reply to this post – I also had my SCT in Spetember last year and my para protein has started to go up again (last reading was 5) but both UCH (where I had it done) and my local hospital are not bothered about…[Read more]

Hello David, you where right and I was wrong – it appears I heard what I wanted to hear at my last consultation and got the words remission mixed up with partial response !! Just received a copy of my clinic letter and its there in black and white – now I have to tell my family I got it wrong – s – At least I am in a good stable plateau phase and…[Read more]

Hello David, – Ive got a leaflet from the myeloma UK nurse which is called 'How do I know if my treatment has worked?' and on table 2 – Measuring response to treatment it says Complete remission response (CR) No detectable paraprotein in the blood and normal percentage of plasma cells in the bone marrow OR absence of myeloma cells in the bone…[Read more]

Hello David, I had my SCT in September 2010 so am now 4 months post – I have had 3 blood tests since that have all showed that my para protein is at 4 – my bone marrow biopsy was myeloma clear which meant (according to my consultant) that I am in remission. I am now on no treatment or medication and returned to work yesterday. Just have to keep…[Read more]

Hello David,

I did speak to the myeloma nurse but she hadn't heard of it either. Dr Rabin is ringing me on Monday with my latest para protein results so I will speak to him then. Have decided that if I'm in total remission in January I won't go on the trial and if I'm not I will give it a go.

Thanks for all your help
Keep well
Love Gill…

Hello Gaye, I wont get the results of my SCT until 5th January – I'm having a bone marrow biopsy the week before Christmas. Apparently this trial is to prolong remission in patients that have had a SCT within the last 3 – 4 months. I keep hearing dodgy things about the effects of Velcade and am not sure if its worth the risk or not. But then if…[Read more]