[kaychappersParticipant]

Hi Em

Sorry to hear about your dad. My family are the same, we use humour. I find it masks the denial and fear that I felt when I was diagnosed, but if it is their (and my) coping mechanism then its not a bad thing. From my own experience I can only say I have complete trust in my consultant and hospital regarding MM they know exactly what they are doing. If one drug does not work they can try another one, but it is so individual. I was allergic to one of the tablets and it made me come out in a rash which made me look as if I had german measles (very attractive). They took me off of it and in two days completely clear, much to my partners relief. It really is a day at a time. I hope your dad gets relief quickly. Keep in touch with the site its great Love Kayx

[kaychappersParticipant]

Hi Tanya
Sorry to hear about your dad, but now he has had the diagnosis confirmed he can begin the treatment and the journey. I started CTD 12 days ago. I find having someone go with me to the initial appointments helpful just to have someone there to hear things that i may miss. But I think after my first three week appointment I will be going on my own. I was bewildered by the number of tablets and injections, but after taking them for one week I found it all started to fall into place quite easily. I would think that you telephoning your dad just to prompt him would be a good idea. Stick close to the site there is always someone who has either been through it or is going through it who can offer their experience but it is very individual. I also agree with contacting the nurse she is so lovely and knows how to put your mind at rest. All the very best to you and your dad. Love Kay x

[kaychappersParticipant]

Hi Jo. That's interesting about anti biotics mine are co trimoxazole forte but the rash is like german measles. Great to hear CDT was a success for you.keeps me positive Kay x

[kaychappersParticipant]

Hi Bridget thanks for reply. I did not have gout thank goodness. I was put on a tablet for one cycle to stop it. My consultant said that when myeloma breaks down it could cause gout!!!! But they took me off it because of the rash. Although it's not pleasant for you it's nice to know we seem to have the same symptoms a few days after the Dex. Strangely I also laughed when I saw your dream. I also had the weirdest dream last night about my friend which I told her about this morning. She thought I was my rocker. Mind you so did I. Kay x

[kaychappersParticipant]

Hi Bridget
I have started my CTD now. On the second week. I have had the sandpaper mouth but been lucky with, up till now, no other effects. However, today, I have a rash which the nurse has said is due to the gout tablet and has taken me off of it. But I was interested to hear about you saying how tender you feel. My back feels like it is going to break today. I finished Dex last Thursday so I have not put it down to that. I just thought it was bad posture!!! Could it be the dreaded Dex? I know they were pretty powerful when I came off them. Like being hit with a steam roller.

Kay

[kaychappersParticipant]

Thank you. Look forward to the journey with you.

Kay xx

[kaychappersParticipant]

Hi everyone
Well my consultant called and I am to begin treatment on Tuesday!!!! Bone marrow was 13% now 30% but more worried about my anaemia. I have dropped from 10.3 to 9.4 in 5 weeks. She has told me I will be on lots and lots of tablets but she is lovely and I trust her completely. Will not know until Tuesday if I am on Revlimid or Thalidomide. All day at a time stuff but bit nervous.
Love Kay xx

[kaychappersParticipant]

Thank you to all of your replies. I only had a local anaesetic. My first one was done by my clinical nurse, who was off sick, but next time I may well ask for sedation. They are trying to get me on the trial with Revlimid, but I shall know exactly on Thursday. Will let you know and appreciate all of your support. It helps when you talk to other people that have been through it and on the other side.
Kay xx

[kaychappersParticipant]

Thank you.

xx

[kaychappersParticipant]

Hi John I would like to say welcome too.
I have just joined the site and everyone is extremely helpful and supportive. I too hope you keep those levels low for years.

Kay x

[kaychappersParticipant]

Hi Scott
I just wanted to say hello too. I started as a smoulderer in April 2009. My para proteins started at 30 then fluctuated between 25 and 29 until September this year, when they suddenly went up to 32 and my haemaglobin went from 12 to 10. They have decided to start treatment in the new year and hopefully I will be on the Myeloma XI trial. I have no other symptoms other than extreme tiredness, but that has got steadily worse over the last few months. I came on this site a couple of weeks ago and I have found everyone extremely supportive and friendly. I hope that you keep smouldering for a long long time.

All the best Kay x

[kaychappersParticipant]

Hi Sarah
Thank you so much for your very positive message. I am very much a 'one day at a time' person, but I do have to be reminded frequently. I also do not like to ask for help and I have the habit of 'cutting off my nose to spite my face' especially with my partner who I can push away. I have such lovely friends and I will make sure I take your advice to allow them to help me if and when I need it. I do hope things go well whilst you are in hospital (with your positive attitude I am sure it will). Thank you once again Sarah.
With all best wishes to you. Kay x

[kaychappersParticipant]

Many thanks for your kind reply Bridget.

[kaychappersParticipant]

Hi Tom

They will be trying to get me on the Revlimid in Feb and then stem cell treatment 6 months later, so its the same as yours. It reassures me when you say never looked back. Still cant believe this is happening, but as you say onwards and upwards.:-) Great to be around people who know what it is like. Will keep in touch. Kay x

[kaychappersParticipant]

Hi Debs and thanks so much for your reply. They are trying to get me on the Myeloma XI but will not know until the 1st Feb when I am due to begin then I will be having stem cell transplant 6 months later. Your comments have made me feel a lot better already. I will keep in touch.

Kay

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