I'm so sorry to hear about what you had to suffer before you got any answers, I feel selfish now to be complaining about a 6 month wait.
Thank you for the helpful and encouraging reply.

Best wishes for you Bridget x

Thank you for your time replying eve,

It's hard to have faith in the nhs when they won't listen (minority I admit).

I read that in the average gp's working career they may only see 1 maybe 2 patients with myeloma,
I'd never heard of it personally but I knew something wasn't right with my dad and I think the doctor should of realised this…[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]

Fantastic News Dai! Here is too a very long remission time!!

David was supposed to start his 6th cycle today but he has been admitted feeling under the weather. So they are waiting to see whats what and do a few tests and a scan.

Hope the last two cycles are being kind to you!!

Love
Meike

Dearest Min,

I don't know what to say. Peter's passing has come as complete shock and so sudden. My heart goes out to you and your family! You are a remarkable woman who has been supporting her husband in the most loveable way. You are also incredible at advising, helping and supporting other members of the MM family. Please keep strong! And…[Read more]

Hi All,

Sorry we have not been here in a while?things have been a tad busy. Thank you all for your kind and encouraging words! David has now completed his 4th cycle of Velcade and by the look of it will be doing an other 4 before preparing for SCT?

The last couple of weeks have been difficult for David. His pain levels in his back have…[Read more]

Hi Dai,

Thank you so much for your very encouraging reply!

David has started his 3rd cycle of Velcade on Friday and had a couple of good days on Dex, we even took a trip to our local B&Q yesterday for some manly shopping. He took great delight in using one of those electric scooters they have in store for people who are not so…[Read more]

Hello everyone,

I'm Christin's mum.

To say the least this has been some roller coaster ride so far. The side effects of the steroids are not very pleasant but we can manage..just need to stay calm! Its the pain that David is in is very concerning and hard to watch someone you love being so uncomfortable! We are having an appointment on…[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]