[kaychappersParticipant]

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 they will be more certain and concrete with the MRI scan results. You may have to get a new name how about the tunnel woman or the in and out woman (just a suggestion) 😀 Love Kay x

[kaychappersParticipant]

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 friends are waiting in line to have my biger clothes when I lose weight 😀 Kay x

[kaychappersParticipant]

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 stop the taste in my mouth 😀

Kay x

[kaychappersParticipant]

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

[kaychappersParticipant]

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 look 😀 Probably because I looked so white, tired and pale for the months before. Must admit bit scared about the SCT but you are all positive that the fear is not so bad – just the unexpected.

Thank you all Kay x

[kaychappersParticipant]

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

[kaychappersParticipant]

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 few days after steroids, but apart from that I am able to work when I can and keep my life as normal as possible. I find prunes prunes and more prunes help, but still need help with a laxative now and again. I think it is quite normal when you are on Thalidomide. Not pleasant but the outcome will be worth it 😀 I wish you and your dad well.
Kay x

[kaychappersParticipant]

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. I just take it one day at a time and if I do feel tired or fidgety (usually on the Dex!!) I just go with it. Listen to your body its knows best 😀 Stay in touch. Everyone here has either been through it, going through it or will go through it. I find it so helpful.
Kay x

[kaychappersParticipant]

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 concerned about. I have had 3 cycles of CTD and now I have plateaued at 23. They expect me to go to 20-22 when I go back in 3 weeks, when I will be radomised for Velcade of sct. I must admit seeing the very low PP I hope I will get velcade. Its so individual and I am learning that more and more on this site. Thank you.
Kay x

[kaychappersParticipant]

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 awful which makes me eat even more. My last cycle they reduced them to half and it has not been so bad at all. The good side of things is I love everything I bought on the internet and my house looks great 😀
Kay x

[kaychappersParticipant]

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 20 when I get my 2nd cycle back, but I am not getting too excited as I know it can slow down and I may be in the same position as yourself in a months time. They have doubled my Thalidomide and it knocks me out at night, but also makes me tired during the day, but if that is all I have to moan about I think I should shut up. Keep trying to post on here but I dont seem to be able to unless I reply. Must be computer Dex 😀
Kay x

[kaychappersParticipant]

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

[kaychappersParticipant]

I think that is great news for you David. I have only just started my treatment, but it gives me great hope that there is light at the end of the tunnel.
Kay x

[kaychappersParticipant]

Hi David They took me off Allopurinol. Although the rash has gone down considerably it is still there if I get hot, but I suppose it takes a while to get out the system. I am also on the same anti biotic and take one a day Monday, Wednesday, Friday. It will be interesting if the rash does not go down I will mention it at the hospital. I am back there Tuesday for next lot of drugs.

Love Kay x

[kaychappersParticipant]

Hi Clara and Angie
Welcome to the site (although you can see people wish you didn't have to be here). Sorry it has taken me a while to appear but I started CDT 12 days ago so been getting used to the routine, which I must admit was easier than expected. As you say the attitude is "Lets get started" Lets get well. Keep close to the site everyone is lovely and full of experience. Love Kay x

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