Hi Dai
Wow what a great passionate song with wonderful meaning.
Played it a couple of times. Kay x

Hi Dai
Best of luck tomorrow. MM and the treatment are so individual. Keep us posted.
Kay x

Hi Bridget I do hope the pain killers are helping a little bit today. As has been said I think we know our bodies very well now and a telephone call tomorrow hopefully with ease the pain going on in your head, which you dont need as well. Fear of the unknown is greater than knowing what is going on, at least then we can try to deal with it. Much…[Read more]

Hi there I am so pleased your sct went well. I understand being kind to yourself and taking it easy for a while is the key to getting well. Keep us posted. Kay x

Oh gill I am soooooo pleased. That has made my night. My very best wishes to you both Kay x x

Hi Gill I too just wanted to say how sorry I am to hear of your news. You have been a great support for people here. I hope that you can vent all your feelings out here and we can be supportive of you in return. I agree with others, keep fighting the fight. Love Kay x

Hi there. I agree with the others. My PP was 29 when I was diagnosed and rose to 36, but the reason they started treatment was because I became quite severely anaemic. I think they start treatment only when, as you say, the other bloods or bones are affected. For reassurance I would phone the Myeloma helpline they are so helpful Kay x

Hi Bridget
I always think it is nice to have a 'label' although I think I would have to laugh too at 'weird'. Im sure they ment it in the best possible way 😀 I was really worried when I had my MRI as I am claustrophobic, but I loved it. It took 1 hr 45 mins and I ended up tapping my foot to Frank Sinatra (which I got told off for). Hopefully…[Read more]

Well all the replies have certainly cheered me up and made me smile. At least I know that all the money I have spent on clothes I will save on having my hair coloured and cut and also save money on waxing for a few months 😀 All my old clothes are stored safely in my loft (could not look at my size 10 clothes now I am a 14) and a few of my…[Read more]

oh its so good to be able to have a moan about weight. I started at size 10, replaced my wardrobe with 12 and just replaced it yet again with 14. My face is bigger than the moon, and yet everybody keeps telling me how well I look (good ole steroids). I dont feel so alone now. Anyway off to have another biscuit, well I have to have something to…[Read more]

Thats great news. My son ran the half marathon at Silverstone a couple of weeks ago for Myeloma in a pink dress but there was a case of beer at the end 😀 I wish him good luck Kay x

Thanks to all your replies. They made me laugh. Im also on the Dex Bridget and the hairy top lip and eyebrows seem to grow weekly. I have to look twice in the mirror some mornings to make sure its not my partner. I had all my hair cut to short a month ago and its amazing how short hair and 1 and half stone later people keep telling me how well I…[Read more]

Hi Tony
I am on the MX1 trial. I got the CDT arm and had three cycles, just started my fourth. However, they believe I have plateaued and will probably be radomised for either velcade or straight to Barts for STC. Looks like they are in no rush for you which as Bridget says can only be good news.

Good luck Kay

Hi Clara
Just wanted to thank you for posting your dads side effects as I have had every one of them as well. I am just about to start my 4th cycle of CTD. I started very well apart from being allergic to allopurinol which covered me head to foot in a rash – very attractive ! I have found I am getting more tired and feel "not quite there" for a…[Read more]

Hi Mike
Really sorry that you have to be on the site, but it really is the best source of information and such lovely people that you never feel alone. I started Myeloma XI trial and I am just starting 4th cycle. It took me 2 cycles to get into the swing of things and to learn my pattern, but once I was in the pattern it was very easy to manage.…[Read more]

Hi everyone
All the conversations about the PP levels have been very interesting for me today. I started with smouldering myeloma 2 years ago at 29 they steadily increased and before Christmas I was told I would need treatment. My PP level was 36, my bmb results increased from 13% to 43%, but it was my anaemia that the consultant was more…[Read more]

Hi Jet sorry but I also have the bad experiences on Dex. I was on 20 tablets of 2mg for four days twice in my cycle of CTD. I ripped through my bank account on the first lot. I bought everything in sight I was so high. But it was the come down that was worse, blurred vision, ratty, exhausted. My weight has ballooned and the taste in my mouth is…[Read more]

Hi Debs I am so glad they put you on the revlimid and you did not have to make the decision about going straight to SCT or coming off the trial. As you know I am on 3rd cycle of CDT on the trial. Not going too bad except for the Dex cheeks and going up by two dress sizes 😀 My PP went from 36 to 29 in the first cycle and she believes I will be…[Read more]

Hi Chris
Sorry to hear about your husband's rash. Did you get a diagnosis in the end? I would definitely keep in contact with the oncology department and nurse/consultant as Tom says. I only have to pick up the phone and they ask me to come down. They are the experts in their field. I hope that your husband has improved.
Kay x