Hi Dai

So sorry to hear your news.All your hopes built up then crashing down again,this is what we felt when Slim was on CTD one minute on are way to remission with kappa light chains at 10,bone marrow taken for trials only to be told when we saw consultant,that he was shocked to find it had gone up to 80% in bones although kappa light chains…[Read more]

Hi Kay
How did it all go for you today?
Helen

oH Bridget

you are being so brave I hope this works for you I am keeping everything crosssed that it works you deserve a really long break from it all I hope the back ache is just a muscle problem and nothing else after all you have been lying around too much:-D and taking it easy ''What just two loads of washing'' is that all

Love and big…[Read more]

Thanks Everyone
For all your support,It is such good news,which has taken a long time to get to this point,but it is lovely to be here,sound a bit stupid,but at times just could not see the light at the end of the tunnel,so its good,good and even better.;-) 😎 🙂

I cannot help thinking about some people who are not posting like Sharon who…[Read more]

Hi Glenn
I originally am a scoucer,so I know that Clatterbridge from the start has all ways been a designated Cancer hospital,so you are in good hands.

Slims on the Velcade with Dex and Cyclophosphanide. VDC for short,as you progress with Zometa you will find you can do more things,iam all ways nagging Slim about doing to much,his answer is I…[Read more]

Hi Bridget

I too have my fingers crossed for you. I pray that the treatment works and the beast is well and truely hammered!!
My very best
Love Jean xx

Hey Bridget
Happy new year. Hope this one is good for you. You seem to have done more than me today and I'm only on the revlimid! All I could do today was to pack the Christmas decorations in a box and cook the dinner! Still managed to fall asleep on the sofa again.
Love Helen

Hello Eve
Good news for you at last. What a struggle it has been. Time to take a breath now before the next phase. I found the sct much worse than I expected, I'm 18 weeks post now and not able to stay awake all day yet! Still got lots of gut problems -the unpredictability of which is very unnerving ( and painful!!) but I am in remission and that…[Read more]

Hello Liz
No I didn't have any plasmacytoma, I became progressively more anaemic as the mm cells took over my bone marrow and stopped the normal blood cell production. When I became too anaemic to give blood at the donor session I was sent for tests. That was October 10. I was diagnosed with mm in February 11, fortunately for me i have no obvious…[Read more]

Great news eve
lets hope it lasts a real long time so yuou both can get on with your lives and enjoy your travelling again:-)
Love Jo

hello Glenn
I dont think we ever really get over the shock ''why me '' I am a bit older than you I retired early one day ok next day in hospital with renal failure double pnuemonia and MYELOMA that was three years ago I managed with the thalidmide and have been in remmission for nearly three years I didnt have an SCT( my choice )as my kidneys…[Read more]

Hi Everyone
Thanks for your wishers,I know it,s just the start,but to us its a light at the end of a very long tunnel.
We will go to kings,and see what they offer on SCT but we know how the consultant feels,but as he said Kings do hundreds and they are the experts.

We are still piled up with appointments so no travelling yet,hope to be able…[Read more]

Hi Bridget

I think you would be good as our resident expert on financial matters on this site,at our hospital there is no information except a notice board note telling you to get in touch with macmillan office.I tried this when Slim was in hospital,never received a reply,made me so angry it put me off trying.
later applied for,some…[Read more]

Hi liz
Bone marrow transplant is a generic term these days and can mean any of several procedures. Many of us mm sufferers will have autologous stem cell infusions (our own cells previously withdrawn and saved) ( commonly called transplants) after high dose chemotherapy and some will have additional allogenic (donor cells) you need to get reading…[Read more]

Hi Eve

Hope all your news is good. Well done you both. Frank and I l ove cruising we go when we can. Our favourite is Royal caribbean. Whatever you do – enjoy – I am delighted and so happy for you both. It has been a long road – but you and Slim show that there is a definate light at the end of the tunnel.
My love and best wishes to you…[Read more]

Hi Heather,
I have to ask where have you been,no insult,but people like you can be such a help on a site like this,we know from other people the NHS are not the best when it comes to there own staff.

If you want a honest answer from me,both of you retire as soon as possible,
I know what you are thinking,it,s not about money it,s your quality…[Read more]

Fingers crossed for today Eve
Love Helen

Hi Pilgrim
I would agree completly about banks,many many years ago,I was desperate,saw my female bank manager who had so much faith in me,these days its computers or the legal department full of kids out of uni who decide you fate.God Help US.

Its just having the energy to fight the battle,when you have enough to worry about without banks…[Read more]

Hi Glen
My name is Eve I know Clatterbridge ,good hospital for Cancer,going back years live in the south now.

It is a bit of a shock to the system,CTD is the first chemo ,never heard of PAD but there again my husband is on Myeloma X1 trials so next chemo was Velcade,but it is a bit of a post code lottery.My hubby is still trying to get…[Read more]