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Advice needed: daughter stopped taking imatinib

Hi everyone, I haven't posted on here in a while but really need some advice. My daughter is 15 and was diagnosed 18 months ago she also has cystic fibrosis. She has been going through a tough time lately and finding it really difficult to deal with her cml. I'm not sure if the imatinib causes depression but I'm fighting a losing battle to get her to take it. I feel like my family is torn apart and always arguing trying to get her to take her meds. She informs me last night that she doesn't care what happens to her she is not taking it. I just don't know what to do. She is seeing a pyscologist but only been once. Last hospital visit bloods were good and she doesn't have to have anymore bma, so thought it was good news and under control. My big worry is that how long can she not take her meds for? She tells me she started to not feel well but still refuses to take her imatinib :(
Would be grateful of any advice.
Clair x

Dear Clair, I am so sorry you have to watch your daughter suffer so. She is not alone in not wanting to take her medication- and being 15 I am sure she must to so fed up with the whole thing and probably feels she is on her own.

I think it really is important that you talk with either her doctor or if there is one available at your daughters treatment centre- the support nurse or clinical nurse specialist.
Not taking her drug might well be - at least in the main- because of the level of side effects that are common to imatinib. Of course there are side effects to all drugs and 2G TKi like nilotinib and dasatinib also have side effects- but not the same ones as imatinib.

It might also be that she needs to know that there are other young people who are diagnosed with CML- I met a lady at the Glasgow Seminar last month who's daughter is also 15 and on imatinib. She too is struggling with side effects. If you would like her contact I can try to put you in touch. let me know.

There are several members of this site who have children with CML. It might be of some support to you and your daughter if you can make contact with Children with CML Facebook group.
Try here- https://www.facebook.com/groups/207664421574/?fref=ts

You really do need to find support for your daughter- she must adhere to TKI therapy- her doctor should really switch her to a 2nd gen drug- pref. one with a once a day admin regime- dasatinib is available but your doctor needs to apply through the Cancer Drug Fund -in England... or through Individual Patient Application- in Scotland, Wales and N Ireland.

Once you get to grips with exactly what is stopping her taking her therapy - the majority of cases is to do with side effects- then you can begin to help her.

I hope this is of some help to you-
Sandy