Hi Michelle I am so sorry that you and your husband are at the stage that you are especially the young age that he is as well (although whatever age this terrible disease does not care and is hard and awful for all concerned). I agree with the others, always make sure you say how much you love the person and try to keep positive. There are other…[Read more]

Thank you all so much for your replies. I think the answer is BE PATIENT and just do as much as my body will allow.
Best wishes Kay

Thanks Min and Wendy. Paracetemol seem to help. I also have been told my feet hurt due to the velcade, I only hope it does wear off. I think I just want to feel better yesterday, even though the consultant told me it will be 3-6 months. Patience has never been my strong point. Sorry to hear you are going through the same Wendy, but nice to know it…[Read more]

Hi Jim sorry you have to come here, but the people here offer lots of support. I was 44 and extremely fit too. I was completely shocked, but I think we are going to here more and more younger people being diagnosed as they can pick it up earlier and that I am so pleased about. I was on the XI trial. There are lots of pills to take, but you soon…[Read more]

Hi Peggy so sorry to hear about what has happened and I sincerely hope that you are on the mend. I also had an allergy to allopurinol and ended up in hospital with the rash from neck to toes and shivery. They pumped antibiotics into me and sent me home with lots of antibiotics which thankfully cleared it up. My best wishes to you.
Kay x

Hi Dai
In a positive way its good there was a reason for you being so down, but it must have been pretty rough for you with the needles. So glad they got you sorted. Everything crossed for good news on Monday.
Kay x

Hi Gill
I have put on 2 and half stone in weight and gone from a size 8 to a size 14-16 (closer to the 16 :-)) I was on CDT now on Velcade. I found it hard putting on the weight in the beginning, now I am going with the flow. Its going to be the only time I can eat what I want so I am going to enjoy it. I know it will come off once I have my SCT…[Read more]

Hi Claire
I was diagnosed in 2009 and only started treatment this year. It was a watch and wait for me too. I was monitored with blood checks and my consultant said that the treatment would make me more poorly than the disease at that stage. They can tell so much from blood tests and intervene before you get, as the others have said, the bone…[Read more]

Hi Gill
Sorry you have to come here too. It is a bomb shell when diagnosed, but as everyone has said this site is wonderfully supportive, and there is always someone who has been through it, going through it or will be joining the journey with you. Ask questions as the hospital and take someone with you who can be your added ears. Let us know how…[Read more]

I just wanted to let you know my experience too. I was on Myeloma X1 trial and got CDT. It plateaued at 22 after five months and I got SCT arm of the trial. I was taken into hospital and had stem cell harvest only to be told my pps had gone up in a a couple of weeks to 34 (they were only 38 when I first started treatment) so they stopped the…[Read more]

Hi sorry you have to come onto the site. It really is a blow and total disbelief when you are told that you or someone you love have this disease. I was extremely healthy when they picked it up and only had tiredness. I would only suggest that when you see the doctors you have a pen and paper with you and way up the options that you are given.This…[Read more]

Hi Dai
Think it is always good to let off a bit of steam rather than let it go round like a washing machine in our heads. Its enough you are going thru the pain and fatigue without having to listen to your head. Hope you get a little bit of playing. I remember going on your website and listening to your songs it really cheered me up. I have taken…[Read more]

Thank you all so much for your kind support and wishes. Was at hospital today and was told I am anaemic so they are going to give me lots of lovely blood on Thursday along with my chemo. Been told I will feel much better. So grateful for the team around me and glad there is a solution to my feeling so tired emotionally and physically so early on…[Read more]

Thank you for your best wishes. My bone structure Carol is no longer like my photo. The Dex round face has totally got rid of that 😀 Back to hospital tomorrow for next Velcade injection. I bought two wigs Min, one for the professional look and one for the glamour look, although the glamour look is now a thing of the past as I have gone up 3…[Read more]

Thank you for your replies. My hair started falling out on Friday. They told me it wouldnt but I think it may be due to the chemo they gave me in Barts before stem cell harvest. Its ok I had my wigs and scarves ready. Going for the shave tomorrow as my partner is complaining of the hair in the bed ha ha.
Kay x

Hi Christin
So sorry to hear about your dad. I am 46 and started velcade this week as Thalidomide did not work for me. I have heard a lot of positive reports about velcade, but also know that this illness and its treatment is so individual. It is so important to get your dads pain in order. I do wish your dad well and also to you. It is very…[Read more]

Excellent. Made me laugh whilst lying wide awake on Dex 😀 x