Hello and a Happy New Year to everyone.
I have been visiting this site regularly since being diagnosed 3.5 years ago. It has proved to be an invaluable source of information and I am extremely grateful to everyone who has been involved in setting up and running this organisation and providing us with the opportunity to share our knowledge and experience with each other. I have finally plucked up the courage to post my history and ask the CML community for their help and advice with my current situation.
I was diagnosed in June 2015 in Chronic Phase. My baseline PCR was 24% (all results are IS). I started on Imatinib 400mg and my PCR dropped to 0.49% and 0.13% after 3 and 6 months respectively. However, I didn’t reach CCyR until 9 months and my PCR increased to 0.3% at this time. My Consultant increased my Imatinib dose to 600mg to try and ensure I hit MMR at 12 months. I failed to achieve this and my following PCR results were between 0.2% and 0.3%.
In October 2017, my Consultant and I agreed to switch to Dasatinib 100mg, since this option was now available on the NHS following NICE rapid reconsideration. I had no mutations, as this was checked as part of each PCR Test, since I was on the BFORE Trial (Bosutinib 400mg vs. Imatinib 400g for newly diagnosed patients - I was randomised to receive Imatinib). I had my first PCR result following switching to Dasatinib after approx. 3.5 weeks, since I needed a final PCR result after leaving the BFORE Trial. My first result was 0.065%. This was my final result from the lab in America. I was really pleased I had finally managed to hit MMR. However, my first PCR Test after 3 months went missing and my results after 6 and 9 months were 0.124% and 0.233% respectively. These tests and subsequent readings were performed at Hammersmith. My Consultant enrolled me onto the CALLS study to obtain a low level mutation test using Next Generation Sequencing (NGS) at Kings College. This didn’t pick up any mutations.
In August 2018, I switched to Bosutinib 400mg (300mg for the first 2 weeks to minimise potential problems with diarrhoea). My first PCR result in September was 0.095%, the second occasion I actually managed to reach MMR. However, my Liver Function Test result at 3 months showed my ALT had risen to 270. I took a break from treatment for over 2 weeks to allow my ALT level to reduce and tried restarting Bosutinib at a reduced dose of 300mg. Unfortunately, my ALT level increased after checking 4 days later. My Consultant has decided that Bosutinib is no longer an option for me and would like me to switch to Nilotinib. They have previously tried to steer me away from this due to it’s potentially adverse cardiovascular safety profile. I don’t have any history of cardiac problems, but don’t like the prospect of fasting twice a day.
I have managed to convince my Consultant to allow me to go back on Dasatinib 100mg, although they weren’t happy for me to do this and believe I should try Nilotinib. I am wondering if I should try Dasatinib 50mg instead of 100mg since recent research has indicated this may be more effective (although I believe this relates to newly diagnosed patients). Any thoughts and advice would be greatly appreciated.