Elizabeth was diagnosed with chronic myeloid leukaemia in 1999 and was one of the first people in the UK to receive Glivec. She then developed acute myeloid leukaemia, which was treated with FLAG-Ida then a stem cell transplant. She is in remission.
Elizabeth had always been very fit but in 1999 she caught a throat infection, was having heavy periods, found skiing unusually tiring and developed an enormous bruise from a small bump, and nearly fainted one day. A doctor colleague urged her to see her GP. After a blood test the GP referred her to a haematologist. A bone marrow biopsy confirmed the diagnosis of chronic myeloid leukaemia. Elizabeth was told her life expectancy was about three years and the treatment options included interferon and an allogenic bone marrow transplant. She demanded a referral to the UK expert on CML.
Elizabeth started on hydroxyurea chemotherapy tablets while her siblings were tested as possible stem cell donors. Her brother was initially found to be a match but this was due to a laboratory error. Her mother demanded to be tested and, unusually, was a match.
Two days before the transplant, news broke in America about a new drug for CML. Elizabeth postponed her transplant and waited until the drug entered trials in the UK. To be eligible for the trial Elizabeth had to have failed on, or been intolerant to interferon, so after a while she was persuaded to take this. Interferon made her feel zombie-like and after 4 months she was transferred to the new drug, Glivec, as part of the trial.
Initially the Glivec made her ill and she had to repeatedly stop and start the treatment. After taking a growth factor to stimulate her white cells the leukaemia started going into remission. Elizabeth then heard of a trial in America for a vaccine which could be taken alongside Glivec. Her doctors agreed that she could go to America but unfortunately the vaccine had no lasting effect on her leukaemia.
Elizabeth began to feel unwell again and developed a cold sore that didn’t respond to anti-viral treatment. The doctors couldn’t agree on what to do. A central line was fitted ready for a chemotherapy called FLAG-Ida and Elizabeth was told she now had acute myeloid leukaemia. The treatment made her very ill and she needed repeated transfusions of blood products. She suffered side effects of conjunctivitis, diarrhoea, a sore throat, and the skin fell off her hands and feet. Her line became infected and was replaced. Eventually she was given back the stem cells she had harvested at the original diagnosis but had an allergic reaction to the preservative. After 10 days her cell counts started to pick up. After 8 weeks in hospital she was allowed home but was very weak. She was readmitted after a few days with an infection. She felt that her condition was serious so started to put her affairs in order before being admitted to hospital.
The doctors then planned to give Elizabeth a reduced intensity transplant using her mother’s donated cells. Her prognosis was poor so she finished putting her life in order. However, the transplant went relatively well and she also had a donor lymphocyte infusion. About a month later she developed graft versus host disease in the form of severe diarrhoea and vomiting. She was treated with steroids and spent another month in hospital. After being discharged she received the good news that there was no sign of leukaemia in her body and that she was 100% donor cells.
Elizabeth feels that emotional support for patients is lacking and had set up a CML patient support website when she was okay and currently runs a support group at her hospital.