Intensive chemotherapy

Unlike many other cancers, acute leukaemia is treated initially with several courses of daily chemotherapy. This ‘intensive’ chemotherapy often means having to stay in hospital for long periods with occasional breaks at home. This is sometimes followed by a period of out-patient treatment involving regular visits to hospital clinics and/or drugs to take at home.

Frances was shocked to learn that treatment for her ALL* would take 2 years and that most of the…

Age at interview 45

Gender Female

Age at diagnosis 42

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The prospect of a long hospital stay meant having to put normal family and work life on hold. People with young children relied on parents or spouses to look after them. Kerry sent her children to live with her mother, and said that leaving her children was the hardest aspect of having leukaemia. Claire’s mother gave up her job and moved in to look after the children.

Elaine felt bad about leaving her children but was glad their routine was normal; they had their…

Age at interview 39

Gender Female

Age at diagnosis 35

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People in work had to explain the situation to their employers and work had to be handed over to colleagues. A man who was a charity director attended his regular Monday morning briefing meeting for senior staff then left for hospital hoping to continue running his office from his hospital bed. Frances felt very concerned about being absent from her job for a long time and realised that her sense of identity was closely linked to her occupation. Julie found it hard adjusting to the loss of the lifestyle that went with her job in a London bank. Ann missed her job but approached her treatment with the same discipline as if it was work.

Neil asked the specialist to allow him a few days to sort out his consultancy business before…

Age at interview 50

Gender Male

Age at diagnosis 44

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Because chemotherapy for leukaemia attacks the immune system, the white blood cell counts of people having chemotherapy usually drop (a condition known as neutropenia) making them vulnerable to infection. They may be given transfusions of blood products (see ‘Supportive treatments‘) and have to remain in hospital until their blood counts return to a safe level. For this reason people with acute leukaemia are sometimes isolated in individual rooms or wards equipped with air filters where strict hygiene rules apply (see ‘Being in hospital‘). A typical course of intensive treatment for acute leukaemia involves daily chemotherapy with one or more drugs for several days followed by up to a month for the cell counts to recover. A break of a few days at home is usually allowed before the next course of treatment. The number of treatment courses varies between different treatment protocols.

Some people’s blood counts recovered sufficiently well that they didn’t always need to stay in hospital after treatment. Jim said it had been difficult to find out whether he really needed to be in hospital on days when he was not having treatment and felt OK, as he would prefer to be doing something with his family or friends. While many felt too ill to think about getting out of hospital, others had sometimes been bored while waiting for their blood counts to recover.

Kerrys blood counts remained sufficiently high to allow her home most nights while having daily…

Age at interview 32

Gender Female

Age at diagnosis 28

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Being in hospital meant that people had to miss some family or social events and they felt glad when a break at home coincided with an important event. Brian missed a friend’s birthday party but was out for his grandson’s christening. Neil hoped to be allowed out at the end of his first week of treatment to attend a Christmas carol concert at his daughters’ school, but when the time came, he realised he wasn’t well enough to go. Ann managed to negotiate an extra week’s break to attend a friend’s wedding. Some people felt insecure about being allowed home because they would be away from the professionals who were looking after them. After a long stay in hospital some people felt disconnected from life outside. They felt they had become institutionalised or had lost their sense of who they were.

Julie was allowed home for her birthday after her first month in hospital but was anxious about…

Age at interview 38

Gender Female

Age at diagnosis 27

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Breaks at home varied between a few days and several weeks depending on the treatment plan. People tended to enjoy the short breaks for the comfort of being in their own home, sleeping in their own bed and eating ‘proper’ food. Longer breaks allowed people to restore some fitness and return to normal activities such as gardening and seeing friends. On one occasion Ann took a trip to Paris. Elizabeth used one of her breaks to sort out her affairs and make a will. Neil once had to cut short a home break because he developed troubling side effects of treatment. Another time he was glad that his return was delayed by a flu epidemic at the hospital because it allowed him to support his daughter when starting as a boarder at school. John tried to extend his breaks whenever possible.

Some people had been surprised at how quickly they started to feel better after chemotherapy began, while others said that treatment had made them feel very ill initially, including nausea and vomiting and feeling tired and washed out, but that after a while they slowly started to recover (see ‘Unwanted effects of treatments‘). Ann had felt worse as the number of chemotherapy courses increased. Brian’s blood counts took longer to recover after each successive course of chemotherapy.

Sometimes people’s next course of treatment was delayed because the blood count was taking so long to recover. When there is no sign of the leukaemia and the bone marrow is working normally this is called ‘remission’. In acute leukaemia this is often achieved after one or two courses of chemotherapy but treatment is continued to reduce the risk of recurrence. Although Thelma’s treatment did not put her into remission, the proportion of leukaemic cells in her bone marrow is much lower. Ann said that her first course of chemotherapy didn’t work so she was given something stronger.

Brians 3rd course of chemotherapy was delayed because his blood counts were too low. A longer…

Age at interview 61

Gender Male

Age at diagnosis 60

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*AML – Acute myeloid leukaemia
ALL – Acute lymphoblastic leukaemia

Central lines

People with acute leukaemia begin their treatment by having so-called Intensive chemotherapy, involving daily intravenous infusions of chemotherapy drugs while staying in hospital'. To avoid...

Being in hospital

Long periods of time are spent in hospital by people being treated for acute leukaemia or myelodysplastic syndrome (MDS) that is at high risk of...