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Teens with cml

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Hi. 

My fourteen year old daughter has recently been diagnosed with chronic myeloid leukaemia and has been started on imatinib. Been told that it is incredibly rare in young people. Wondered if anyone one this site is going though the same thing with their teenager and how they are getting on.

Sally x

Hi,

It is rare in young people - pretty rare disease in adults too (1 per 100,000). You may want to take a look at the Children with CML group on facebook. At least you can then talk to other parents who are experienced with TKI therapy in children.

There are two groups as far as I know:

https://www.facebook.com/groups/471915522842116/?fref=ts   and   

https://www.facebook.com/groups/207664421574/

Sandy

Hey Sally!  I too have a 14 year old daughter that was diagnosed right before her 13th birthday.  Its incredibility stressful for me lol, but she is handling it quite well.  If you would like to talk offline, that would be great but I don't know how to send a private message.  I am brand new to this forum....

To send a private message, click on the person's username next to their post. There should be a "contact" option on the next page that loads, and you can send a message from there.

We are looking in to making private messaging a bit easier, but for the moment that's how to do it.

David.

Hello and sorry to hear about your daughter. I'm a mum of an 8 year old who is on Imatinab. She is doing well TG. Yes the facebook group is quite good but I really must stress that in the early days I just listened to the medical team and what their guidance was. On the forum however I met another family of a little girl aged 7 and we were able to keep in touch. Every case is so different, I never thought I would be an expert in such things. Take good care