[kaychappersParticipant]

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 transplant. I am now on Velcade and hopeful too that the velcade will knock the blighters back to a low count. I wish your mum all the luck on the velcade and hope that my experience has made it easier that she did not get the SCT straight away and that they have other drugs that they can use to help us. Kay x

[kaychappersParticipant]

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 is a very individual disease with very individual treatment plans. Once they have suggested the coure of action for your dad, everyone here has either been through it or is going through it, so you will get lots of help and support. We are all ages. All I can say is that they are making leaps and bounds with this disease. Positiveness towards it is paramount. I wish you and your dad all the best. Keep in touch and let us know what the doctors say. Kay

[kaychappersParticipant]

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 all day to do a little bit of ironing and now I am off for a sleep. I am lucky with my unit in that my fatigue in the first week was picked up as anaemia setting in again and I am having a blood transfusion Thursday. I do hope that they listen to you and if not I suggest being a lot more forceful when you see your consultant. Good luck Monday
Kay x

[kaychappersParticipant]

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 in the new treatment. I never really had any side affects on Thalidomide, so I am hoping that the velcade is already doing its 'thing'. Shaved head today and I agree Jo I think the shaven look is the new Jennifer Aniston 😀
Kay x

[kaychappersParticipant]

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 dress sizes and heading for the 4th 🙁 Oh well as Tom says 'onwards and upwards'

Kay x

[kaychappersParticipant]

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

[kaychappersParticipant]

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 hard on the loved ones. Stay in touch with the site. There is good support on here and most people have had certain side affects that they can share with you.
Best wishes Kay

[kaychappersParticipant]

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

[kaychappersParticipant]

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

[kaychappersParticipant]

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

[kaychappersParticipant]

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 love Kay x

[kaychappersParticipant]

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

[kaychappersParticipant]

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

[kaychappersParticipant]

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

[kaychappersParticipant]

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

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