Hi. Dusk

Well I would not call my husbands journey great,far from it,I also do not think being late diagnosed determines how long you will live,it just means that you have far more damage to your bone structure,it’s getting the Myeloma under control that is the hard one and that depends on what type of Myeloma you have and how aggressive it…[Read more]

Hi Judy
Welcome and sorry to hear about your pain with Velcade but am pleased they soon sorted you out. Where are you now in your treatment Judy ??.

Maureen just to let you know am still on the vodka and red wine lol.

Liz Elaine is doing great ta and ye she has hawk eyes ha ha, but am pleased about that as am sure I would miss something out he…[Read more]

Can I join in this post,as a few on here realise what my husbands position is at present .

I think more could be done by GP to get a quicker result,and yes I know it is rare plus back ache could be a number of things!!!!,but a simple blood or urine test should be done as routine!!

The facts concerning treatment,NICE has 3 treatments on Board…[Read more]

Hi Peggy

Thank you very much for replying and specially for the information,Slim is a little bit different from you but I am assuming you had platelets every time you had Velcade?????

We are going to the Royal Marsden in Sutton this coming Tuesday,Slims consultant has arranged a second opinion,
The problem Slim has is that after 3 recommended…[Read more]

Hi Mandy

You must be feeling awful at the moment,but it sounds if you were just waiting for your worst fears to be confirmed.

I think you are doing the right thing getting a second opinion,check if your consultant is a myeloma expert rather than just a haematology expert,in theory you are going to be an unusual case,you do not mention your…[Read more]

Hi Andy,

Granthams not too far from me and as for beer festival to say its only 10 mins away and never been to one! Always wanted to but never got round to we will have to try and go am sure kev would enjoy, As for those dex days kevs is a Wednesday so no sleep tomorrow night that goes for me as well so we end up getting up rather early then…[Read more]

Hi carol,

Thinking of you over the next few days hope it all goes well and the side effects aren’t too bad.

Take care love liz xx

Hi Tom,

Glad it went ok for you, how’s Elaine doing from one carer to another as I suspect kevs a lot like you and I try to keep everything normal whilst watching him like a hawk, and those dex days ooh! Even I’ve started staying awake all night and end up on tea duties, LOL!

Take care both of you and keep well
Love liz & kev xx

Hello Mandy,

Sorry to hear your remission was only a few weeks , I’m a carer for my husband kev who got six months remission which was truly devastating at the time, kev said he knew something was wrong for a while before it was confirmed. That was over a year ago and after another relapse with velcade he is now been on revlimid and dex for a…[Read more]

Well double post and some missing

Hi Carol
Bragg away young lady that’s something that should be shouted from the rooftops and you have some spare I will need to do another harvest

Hi Carol
Bragg away young lady that’s something that should be shouted from the rooftops and you have some spare I will need to do another harvest

Dear San

I am so sorry for you that your Mum has lost her brave struggle. However, in view of the pain she has been in over the past few months and the repeated infections, I do hope there is some comfort to you in the fact she is, at last, at peace and she hasn’t had to struggle for many more difficult months in a Nursing a Home.

You will have…[Read more]

Thanks you all.

Had first one done today and that consisted of Bloods taken, Zometa infusion,10 iccle Dex tabs, oh and one amaprasil (check spelling lol) and my Subcut Velcade, The Velcade will be given every week, the bloods every three weeks, the Dex and Amaprasil to be taken once a week. jobs a good un.

Chris when my cells were collected in…[Read more]

Hi San

So sorry about your mum,I do not know which is easier knowing it’s going to happen or not.

I hope you and your family find some peace at this sad time,no more pain for your mum,I also hope you were able to spend some time with your mum doing normal things with out the myeloma being up most in your thoughts. Eve

Cheers Kevin
Its gonna roll well this new treatment,Happy Birthday to your Stem Cells, its great to be in remission and more so when they give you 6 months before you see Dr again.
Keep well Kevin

Tom onwards and upwardsx

Hi Stanstan, thanks it’s gone be another doable just hope it goes into remission faster so am not too near Xmas for my SCT this time.

Hi Jean, we are also expecting more than four this time round, yes we are both strong folk and will crack it.

Love to you all.

Tom onwards and upwards xxxx

San I’m so sorry to read of the passing of your beloved mum. My thoughts and prayers are with you and your family

Love Jean x

Hi Tom

Good luck on Monday and with such a positive attitude as yours, I hope the treatment goes well and you get a hell of a lot more than 4 years. Love to you and Elaine

Love Jean x

Hi Mary,

Sorry to hear Charlie collapsed, I hope the chest infection is on the way out by now.

We live in London so I can’t offer any help on your choice of hospital but I hope the move into the new house goes smoothly.

Megan