Hi all
Hope you are all well. Ok I've now been on nilotinib since June and wow is all I can say.
I feel like a new woman I can't believe how unwell I felt on gleevic without knowing about it.
I'm sorry I havn't posted for a while but I had a bit of a shock. A close friend of mine recently went into hospital with a sinus problem. Upon doing bloods they found she had a WBC of 233k she was moved to the cancer centre that day and was given a preliminary diagnosis of AML. I went that day to see her and sadly it was the last time I saw her as she passed away that night. I went through so many emotions just after this as I felt so confused and shocked. Part of me took this worse than my own diagnosis. The reason I was so confused was that she had no symptoms and I always thought you would have some in this stage. Secondly I couldn't get my head round how she was dx that day and then died that quick. I was gutted as she has always been so good with me and my diagnosis.
I've come to turns with it now although it has really scared me. I just wanted to vent really so thought I would post on here as I know u will understand. On the plus side for me my pcr is now 1.5% after being stuck between 5 and 7% on gleevic hopefully I will get my much awaited zero in October.
Thanks all for reading and hope ur all well x
