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good news!
Dear Lucas,
Wonderful news - enjoy and celebrate. I know you have had doubts and fears along the way but it looks very likely that nilotinib is doing the job for you. Well done in getting those Ph+ cells down so low they cannot put a number on them. Just keep taking the tabs and in a few years or so you may be able to try dose reduction and/or stopping.
Thanks for letting us know here on this forum,
Sandy
thank you so much, sandy. i know that my lab is not so sensitive, so i must be around 4 logs of response, but, hey, that's amazing!! i rope i can go to 600mg of nilotinib in some years but i'm afraid to stop medication because i had many problems trying to get a response. maybe in the future i'll lose that fear. thanks again. this site is sensational!
It's indeed a great news, Lucas. I remember you also had some turbulance at the beginning, but you have finally achieved something we are all hoping to achieve. I have just switched from Glivec to Sprycel a few weeks ago. I have to wait for another 2 months to find out my PCR result. Can I ask what's your reason for switching medication. I did so because my doctor thinks my BCR/ABL did not reach 0.1. And how long have you been on TKIs? It looks like nilotinib has done a much better job for you.
William S
hi, william, hope everything's ok with you. i had a poor response on glivec - i had a response, but it was too slow, my pcr was 6% when i changed (7 months and a half into therapy). i was dx in december of 2013 so almost a year and a half. nilotinib gave me some side effects, but it gets me here with a very good response and hope i can continue with this response (or better) for a loooong time. the 0.1% is the goal for 12 months and many people only reach this number many time after, so try to not worry much. you'll do ok. good luck!
Dear Sandy, Lucas, et al,
Thanks for bearing with me when my test results were at 0.385 at 3 mos, 0.365 at 6 mos, 0.13 at 9 mos, 0.11 at 12 mos and now happy, I think to report, 0.0455 at 15 mos.
Other than being cold all the time, needing naps, and having a big bout of dehydration that forced a hospitalization, I am feeling well. I had serious diarrhea from amoxicillin after 2.5 hrs. oral surgery. Even my thyroid went out of kilter and my skin did a shedding!!
However, I must say, it's so good to feel hopeful!!! The sprycel is doing its job.
Thank you so much for letting me know about looking at the pattern of the test results.
Ginger