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Not posted for a long time - just checking in

Hi all,
I haven't been on this site for a long time, which I suppose is a good sign. However, I felt I wanted to come and just see how everyone was doing?

All is good here with Aaron doing very well. He is now 23 years old!! He was diagnosed when he was 15 and for the old timers here will know, this site was my lifeline - literally! Aaron went through a succesful MUD BMT and against all the odds came through this.

I just wanted to say hello and read all of your posts.

I also set up the website 'childrenwithcml' and quite a few parents have gained alot from it - in particular they have been able to discuss issued with other parents in the same situation with the same illness (which was the whole reason for setting the site up)

If anyone wants to take a look then the address is www.childrenwithcml.org.uk

Much love to everyone.
Jayne xxx

Hi Jayne... good to hear from you, and good to know that Aaron continues to do well. Your link is still here on the 'links' page and it is good to know your site is still active for both younger people and children as well as their parents. 

Best wishes to you and of course Aaron,

Sandy

Hi to everyone, I've been using this site since 2004 shortly after my wife was diagnosed (September 2003). Just like Jayne I used to visit this site almost every day for support, an I found a great deal of help here.

I hope that I can encourage people now by letting them know my wife is doing very well - been in complete molecular remission for a number of years. She was on 600mg a day of Glivec from August 2004, but today at clinic her dose has been dropped to 400mg which of course is the normal dose. Her platelets had fallen a little, and as she is in mol remission the clinic felt that she could drop the previously rather high dose.

Although Anne was diagnosed in September 2003, she had been unwell in from earlier in that year, and I'm sure if she'd had fbc done they would have picked up cml then. We are now going into the eighth year since diagnosis - that must be encouraging - I know it is to me.

Best wishes

 

Paul Cooke

Hello Paul,

thank you so much for letting us know how Anne is doing. I am really pleased to hear that she has held her response- and remission- over the long term. It surely must be an encouragement to all - especially the newly diagnosed.

Very best wishes to you both,

Sandy