In the last couple of days I’ve just started taking a reduced dose of Nilotinib, 150mg twice a day. The unusual thing about this is that I’m only just over seven months from diagnosis and still around 6% BCR/ABL.
I’ve just recently started taking Nilotinib again after a nine week break due to a crash in my bone marrow counts and a reluctance for them to rise again. In short I was on Imatinib 400mg but at 3 months I was 26% and 4 months 20%. My consultant deliberated about switching TKI and finally decided that due to my inability to work (because of the medical requirements of my job, not physically unable) he would switch me to Nilotinib. It was a high dose initially, as is normal after switching from another TKI, but it caused my counts to drop to the point I needed a treatment break after just three weeks. The lowest results were platelets 21, Neutrophils 0.5 and Hb 10.6. The main issue I faced was that they would just not rise again! They remained broadly static for around eight weeks before finally jumping to an acceptable level.
My first Nilotinib stint worked very well against the CML in a short time, bringing it down to just over 6% and interestingly even without any treatment for a couple of months, it’s stayed broadly the same. I was given good reasoning why this is as expected.
Now the doctors have decided to start me on a low dose of Nilotinib as they know the TKI works for me but they are trying to prevent another blood count crash. Has anyone else followed this same road? If not i’ll be happy to update my results here to give further information on different doses of TKIs at ‘relatively’ high PCR counts.