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So pleased

Hi
I went to see my consultant today, 4 years and 1 day since I was diagnosed. I am currently taking Nilotinib and my latest BCR/ABL is now down to 0.001 . I have very few if any (tiredness perhaps) side effects and I feel great.

That is great news and really good results - you must be over the moon.
K

I am over the moon although you always want that little bit more 0.000. A year ago my Consultant was asking if there were any potential donors in my family as dasatinib and imatinib were causing me to have pleural effusions. So I feel really thankful that nilotinib was fine. Nilotinib seems to be working fine, although I do get concerned that after a period of time the drugs can cause problems. I was on dasatinib for over two years and was doing fine on it then for some reason I developed a pleural effusion..

Dear Jacqui, apologies for late reply but I have been on holiday and also managed to get an infection a couple of days before my return. Just about getting on my feet again although still not fighting fit!

Many congratulations on your excellent response to nilotinib. If you can keep this up for another couple of years you can consider enrolling in the DESTINY study which is about to open here in the UK later this month.

Meanwhile, enjoy your response and don't worry too much about developing intolerance. This might just be the drug choice for you.

Best... Sandy