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children with CML

Hi,

My son (12yrs old) was diagnosed with CML in November 2017. He is currently on Imatinib 400mg and we were told by the doctors that he will live a normal life. We are still trying to get our heads around it and I worry about the side effects of the tablet. He started complaining about pains in his legs this week especially in the evenings. Does anyone experience anything similar to this. Do you know of anyone diagnosed as a child and how are they doing now?

Bims

Hello there, I'm a mummy to a little one aged 7 who was diagnosed 4 years ago. My best source of information was our fantastic consultants in our local centre. My daughter is on a tki and we manage het symptoms of bone pain and poor appetite regularly. Paracetomol is not advised due to kidney functioning and ibuprofen affects the uptake of the tki. We use heat such as a warm shower or bath and a hot water bottle. Try and avoid cold weather also and wrap up. There is a closed facebook page also for parents of children with cml. That might he useful down the line. In the early stages I relied a lot on my haematologist in Oder to understand this " new normal".

Thank you very much Irishmammy for the advice. I will try the hot water bottle for him and discuss it with the haematologist next week.

regards,

Bims