Difficult decision!

Calalily,
Welcome to this forum. In my opinion- whick echo's Lynn's - you have made the right choice given that you were only offered imatinib as the other choice.

There is no doubt that nilotinib/Tasigna is the better option and has improved efficacy over imatinib esp. in newly diagnosed CML.
The side effects are not worse per se- they are just different But many who have suffered side effects from imatinib have found a vast improvement on switching therapy.

Yes the daily dosing regime is more complex, but you can find a way of managing the timing that suits your own lifestyle- and no you have not burned your bridges at all- imatinib/Glivec is now considered by NICE as an optional TKI for use as a 2nd line therapy -even though it has no NICE appraisal as such in 2nd line- so you can always choose to try imatinib as 2nd line if you wish.

I predict that you will not need nor want to. Imatinib is a very good drug for a majority of patients, but over 40% go on to develop resistance and/or intolerance to imatinib. Both 2nd generation TKIs appraised by NICE for use in both 1st and 2nd line therapy (i.e nilotinib and dasatinib) were recognised in both appraisals as having improved clinical benefit over imatinib.

for NICE cost was the only issue which is probably why your clinician has not also offered dasatinib which was not offered in the same financial terms to the NHS as nilotinib was -

Dasatinib- also a 2G TKI- is currently only available through an application by your doctor to the Cancer Drug Fund in England -
so unless you currently live in the North East region of England, which has not yet agreed to fund CDF requests for dasatinib- or you live in Wales, Scotland or N.Ireland where there are different application systems - your doctor could apply to the Cancer Drug Fund for dasatinib, although it would entail a further waiting period for the various formalities, form filling etc.

There are also other options available: i.e you could join a clinical trial for other TKis coming through such as bosutinib and ponatinib- all TKIs have very similar safety profiles it is just that imatinib was the first one available of this class of drugs- but the newer generation TKIs are all based on the same principle of inhibiting or shutting down the signaling mechanism which causes the abnormal cells to divide and prosper.

There are many members of this forum who are currently taking nilotinib and will be able to advise you from their own experience.
But please be reassured that nilotinib is a very good option, especially in newly diagnosed CML.

Wishing you the best of luck as you start on this journey- which is now proving to be even more interesting (and far less terrifying) than ever of us dared imagine even just 5 years ago. It is only recently that we now talk with some optimism of the possibility of stopping therapy in the longer term.
If you want to be sure that you are a good candidate for stopping therapy sooner rather than later, then you need the best possible treatment from the start-
i.e if the goal is to get to a as low a molecular response in as fast a time as possible then in my opinion you need one of the 2G TKIs to be as sure of achieving this as is possible.

I hope you will feel more confident that you have made a good choice. It sounds like you have a supportive clinician.

Sandy

Thank you so much, Lynn Sandy and Jacqui! It's been a whirlwind few weeks trying to get my head around everything but forums like this are really helping me as you understand what I'm going through so I really appreciate your advice and support. Sorry it's taken me a while to reply. I started Tasigna two weeks ago. My bloods are improving. The side effects seems to have increased and I'm just trying to manage them at the minute. Did/do you suffer from the headaches or rash? I've been taking painkillers to help with the headaches and they seem to get rid of it for a while so i'm just continuing with that and hoping they go away. My skin has been changing a lot even on my face I notice it is rough and bumpy- do you think this will settle down? I had some chest pain- comes for about thirty seconds when I have to catch my breath but I had another ecg today and that seems fine. Have any of you experienced breast pain at the start? I have some crazy combination of symptoms- i'm sure they've a red flag attached to my chart at the hospital! I hope you are doing well with your treatment too.
Thanks again,
Calalily