Hi . My son was diagnosed when he was 5. He is now 17. I have seen patients mentioning breaks in treatment or possible no more treatment. My son has been on Gleevec since diagnosis, 12 years and there has been no mention of ever break in treatment or lowering the does etc. In fact the dose increased as he has grown. He is in 800mg daily. He will be on this for the rest of his life. Do the protocols for treatment differ in every country? We are in South Africa.
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Oh my goodness that’s so young! 
I am not sure but maybe the protocols are different the younger the patient.
All I can say is he’s a very brave young man I was feeling bad about being 38!
I hope his treatment continues to go well and he is able if needed to have a reduction.
All the best to your very strong brave family!
Alex
Hi Moria,
Gosh, that is young for CML. 800mg of imatinib seems like quite a lot - it’s the highest dose approved for paediatric use.
10 years ago we were all told we would be on TKIs for life, but that has proved not to be the case for everyone, so perhaps not for your son either.
There are not many of us here with paediatric CML experience, but there’s a Facebook group called “Pedriatrtic CML Patients & Families” which you might find useful, if you’re not already a member. It’s quite small, but then again so is the patient population.
David.
The protocol for dosage reduction and discontinuation was only in final stages as of last year, and this is among the leading specialists in Europe. Its possible that your doctors are not yet up to speed or are proceeding with caution or a "wait and see" on a relatively new protocol.
I think there is no harm in asking about dosage reduction, your son would need to be monitored closely throughout and I'm sure there are emotional impacts of reducing/quitting so this should weigh into the decision. For instance if your son is doing important school exams, it might not be the right time (but it might be in a few years)
Good luck whatever you and he decide!
Eva, I don’t think those dose reduction protocols (which are ESMO ones, I think - not ELNet but I might be wrong) are for adult patients. I don’t thin they apply to paediatric patients which are a different ball game, really.
Dose reduction / stopping in paediatric situations comes with more worries and orders of magnitude less clinical information.
David.