Dear Vicky
Sorry you dear dad lost his battle with this horrible disease. My deepest sympathy you, your mum and all your family. Take care of yourself and especially your mum as she has lost her life partner and will need all your love and support. Take strength from each other

Love Jean xxx

Hi Michael
sorry to hear about Jo same name as me I had cdt when first daignosed in jan 2009 could not have SCT due to renal failure it actually worked for me I was in full remission until the beginning of this year my PP's are still very low but my light chains are rising so due to my damaged kidneys I will have to start Velcade sooner than most…[Read more]

Hi Ali, Jo and Michelle
Yes it's a horrible thing to get, I feel so tired and sound dreadful. I can see why babies suffer so badly, you start to panic a bit when you can't breathe properly, and I'm a grown up with medical knowledge and I find it difficult!! It is commoner in adults now as children are immunised and we lose our immunity as we age,…[Read more]

Hi Keith
Sorry it's such a minefield at the moment, I too would be a bit worried about those results, but this time 2 years ago mine were at that level just before diagnosis and if blood bank hadn't spotted it I might not know I had myeloma yet? So stay away from anyone with infection, take your temp twice a day, if its above 37.5 for 3 hours,…[Read more]

Hi Etta
I suppose you have a 2 out of 3 chance of tablets being prescribed so it is more rather than less likely, I took revlimid out in New Zealand with no trouble, walked a lot on the aeroplane etc. if you have had thalidomide before, Revlimid is its new brother but has less peripheral neuropathy problems. I took heparin injections for the…[Read more]

Kerry happy birthday for tomorrow. I know it will be difficult but try and have a good day.
Take care
Love Jean x

Thanks for that Megan. The more info I can get the better so I can have questions for the nurse on Wednesday. Hope Phil's side effects disappear. Frank is having ad side effects and withdrawal from the Dex. I think the thought of aving to continue CDT is really upsetting him.

Thanks again
Regards Jean

Thanks for that Lorna. It's a relief to know that they might still do it and I'm glad that Mike is still doing well and long may it continue.

Kevin they said light chains and everything else was good. I did ask the question but it was yet another registrar. I'm thinking of getting a tape and recording answers to all the same questions that each…[Read more]

Hi Kevin

Glad to hear your good news and wish you all the best for SCT. We have just coming back from consultant. Frank just finished his 5 th cycle of CDT. For the past two months his protein has been stuck at 2. Did your protein drop to 0. I'm worried that as its not 0 they won't do SCT. sometime trying to get info from professionals is like…[Read more]

Hi Kerry

Poor Melvin what a terrible experience he is going through (and you too). I cannot offer any advice as I have had no experience of anything like this. Kerry please come on and rant as much as you like. I'm sure there will be someone on the forum who can relate to what you are both going throug and be able to give you advice, support…[Read more]

Hello Kerry

So sorry to hear about melvin what a shock for you both most of us here are over 50 so I can imagine how heart breaking it is to be diagnose under 40 you must be wondering what next we here are all at different stages and we dont give up i know you will give Melvin strength to get through this
Good luck Jo

Dear Dai,

I hope you're feeling better and just wanted to say thanks for all the great posts you put on here. I've read lots of them! You're really helping a lot of people. I'm currently doing my stem cell mobilisation, ready to try the harvest on Monday. No idea if the troops are lining up but I hope so… I guess I'll find out if I get the…[Read more]

Gosh Mika – aged under 20 and 26 years ago! That really is incredible. Thanks so much for sharing your story on here, it does really help to hear positive stories. And your English is excellent!!
Helen

Hi Helen
gosh whooping cough is something you expect to get when a child it shows how vunerable we are even to childhood illness I had shingles and thought that if you had had chicken pox you couldnt get it how wrong was I its true whooping cough is on the increase I dont know why because I havent heard about it for years now hope you feel better…[Read more]

Hi Pat
Try Mcmillan they gave me a form and the Mcmillan nurse in the hospital signed it for me you doc will probably sign yours as he suggested it its a real help if if you are feeling unwell a lot of places charge in carparks but you usually get a space you can also park on yellow lines upto 3 hours good luck
Love Jo x

Hi Etta
Sorry I missed this, bit tired and busy recently, but here is my experience . I've been on myeloma xi trial for nearly 21 months now.
Started feb 2011 on revlimid arm, it took my light chains to 0 in a couple of months and they have remained at 0 since then. 🙂
Had my SCT in August 11 and was randomised to revlimid again at 100 days…[Read more]

Hi Keith

glad you are feeling better at the moment bit of a nuisence out the bloods have you thought about a transfusion i have had a few they do make you feel a bit better dont think it will effect sugars or any thing it might buck you up for the next round of treatment stay well
love Jo x

hello Dia

I am so glad you are back with us wow! you have been through the mill but I believe you are a surviver thinking off you:-)
Love Jo x

hi Vicki
glad you laughed at the legging or as my husband says "that is just not a good look" went to see Henrey Blofelt the cricket commentator the other night he had us rolling with laughter it certainly does you good
Love Jo x