20 years with CML

This year marks 20 years since I was diagnosed with CML in summer 2004 at the age of 18. I had no prior symptoms and simply went to the GP to be prescribed the contraceptive pill. When he took my blood pressure as routine it was so high he took it again because he thought it wasn’t working properly. After the second high reading caused him concern he sent me to the hospital for a blood test. Very late that evening I received a call from the hospital insisting I go to A&E immediately as my blood test wasn’t right. I spent the whole night having various tests and seeing doctors. The next morning a consultant came to see me and explained my white blood cell count was too high and he suspected it was leukaemia. A bone marrow test the next day confirmed I had CML.

I was advised that it was unusual for someone of 18 to have CML and for this reason the consultants initially seemed unsure how to treat me. I was put under the care of the Haematology team at Kings in London. They prescribed me a fairly new drug at the time called Imatinib (Glivec), they were however unsure of the long term side effects for someone my age so they also tested my brother as a possible bone marrow match for a transplant but he unfortunately was not a match.

As the years have gone on there is more knowledge of Imatinib and other TKI’s have become available meaning there is the opportunity to stay on long term medication rather than a transplant.

I took imatinib for a number of years and then switched to Nilotinib in 2017 which I have been taking ever since. I am lucky that I have responded very well to these drugs and have little but manageable side effects, the disease is now “undetectable”. Despite continued blood tests and check ups I live a ‘normal’ life. I work full time, go to the gym 3/4 times a week and spend nights out with friends.

I have accepted I will be taking medication for the rest of my life but that is a small price to pay considering what the alternative could have been.