My journey with CML started on November 10th 2010, after being diagnosed at the age of 66. My symptoms included chest infections, mouth thrush, bruising and trouble with my breathing and night sweats. My GPs at the time insisted it was asthma but did eventually give me the blood test I asked for. The results came back and at 8.30 that morning I was told all normal. At 11.30am my GP phoned and told me I was seriously ill. He said he didn’t know what happened to the blood test but I had to go straight to hospital, where I was admitted and treatment started. I was terrified thinking I was going to die. I have since changed GPs and the one I have now is wonderful and I have full confidence in him.
My GP phoned to say I was seriously ill and to go straight to Haematology/Oncology at Ipswich hospital. After a BMB (bone marrow biopsy) I was admitted into hospital and the only thing I remember was that they said my white cell count was 550! Treatment was started immediately and I spent a week in hospital starting on Hydroxyurea. At one of my early OP appointments I was asked if I would take part in a trial to which I agreed and started on Dasatinib.
I took part in Spirit 2 trial. The spirit 2 trial compared Imatinib and Dasatinib for CML. For people newly diagnosed in the chronic phase. The trial lasted for 5 years. When the trial ended for me in 2016, I think people responded better on Dasatinib than those on Imatinib. From a personal point of view, I felt I was doubly monitored by Cambridge as well as Ipswich Hospital. I agreed to yearly BMB and filled in many quality of life questionnaires.
Since I have been diagnosed my leukaemia has never been a problem. Dasatinib started to work from the very first tablet. My problems have been with the drug causing Pleural Effusions. It started 14 months into treatment and to this day I have never been without a pleural effusion. I was admitted to hospital on two occasions with breathing problems and the decision was made to change to Imatinib in June 2016. 5 months into treatment I had one and half litres of fluid drained from my left lung. 20 days later I had another litre and half drained from the same lung. After my consultant Dr Whalley had a meeting with Doctors at Cambridge to see if I could go on Bosutinib they confirmed that any TKI I tried would cause effusions. I have been fortunate that I am in MMR and a PCR of 0.007. I was asked if I would like to try going drug free and I chose that path for me. I am nervous but I know I will be well cared for and if it is successful my quality of life will be much improved.
On discharge from my stay in hospital I was given printed information sheets by Macmillan. I felt lonely, confused and frightened. The biggest impact on my CML journey is that it has taken away my self-confidence. Much, much later, in our local newspaper was an article about a young mother of three children newly diagnosed with CML. I read that she was holding a coffee morning so hubby and I went along and introduced myself. I wanted her to know she wasn’t alone. I didn’t want her to feel like I did when diagnosed. We exchanged telephone numbers so she could phone me if needed. We still keep in touch to this day. My family did not encourage me to go on the Internet, but eventually when I became mentally stronger, I did look up CML on the Internet and found the CML support group and have never looked back. They are a constant source of support and help and, apart from my dear husband always by my side, I think my journey with CML would have been so much harder. I have never knowingly come across any false information.
I have attended a patient group meeting at Hammersmith and intend to go more often. A great place to get correct and valuable information and that is where I met my first, lovely Leukaemia Care nurse.
I have never felt discriminated against because of my age. If anything, I personally think if there is a good age to have CML it is my age. I have had a good life and the privilege of seeing some of my grandchildren go to university. My heart goes out to my fellow CML-ers who are young and having to bring up young children. I pray, in time, a cure will be found.