So I wrote last time this happened, to recap, I was on Nilotanib for 8 weeks (Ernst1 clinical trial) then had to stop as my platelets and neutraphils were too low (platelets must not go below 50 and neutraphils below 1, I was way below that for 4 weeks. Now I have been back on Nilotanib for 7 weeks and they are starting to drop, platelets 52 this week, so next week will be 8 weeks and they may bounce back but preparing myself for a drop like last time.
My question, what is worrying me, am I right in thinking that it is better, the quicker you get rid of the leukaemia?
stopping the drugs is really slowing me down, I was 45% on my last biopsy and we were hoping for much less. My consultant talked about being near 10% before I had to stop.
I am worried that the long term will be affected by this. I remember reading somewhere that the quicker and deeper you get to remission the better. Am I right?
I am positive, I am going to beat this but I worry about my long term sustainability if it takes me a long time to get to cytogenetic or molecular remission.
appreciate your thoughts.
thanks
Em x