Remission and recovery from treatment

Treatment for leukaemia aims to achieve remission. Remission means that no leukaemic cells can be found in the blood or bone marrow and the bone marrow is working normally again. In people treated for acute leukaemia, remission may last many years, and then they are considered cured. Chronic lymphocytic leukaemia (CLL) is still incurable but treatment can relieve symptoms and induce long-lasting remissions. Long-term treatment with tyrosine kinase inhibitors, such as imatinib, can control the symptoms of chronic myeloid leukaemia (CML) for many years, or possibly for ever, in most people.

Some people with acute leukaemia were told they had achieved remission after their first course of chemotherapy, but treatment was continued to destroy any remaining leukaemic cells and give the best chance of a long-lasting remission or cure. Deb’s acute myeloid leukaemia (AML) went into remission after each course of chemotherapy but his remission did not last until the start of the next. After five courses he had a stem cell transplant, which produced a lasting remission.

People reacted in different ways to being told they were in remission or that they could go home from hospital. Most had been happy, delighted or ‘over the moon’. Some were thankful and looked forward to the future, others were surprised. Gilly said that it hadn’t been her time to die, but she had come close to it. Julie cried with relief when told her AML was in remission after one course of chemotherapy, assuming that she would need no further treatment. However, she had three more courses of chemotherapy and a stem cell transplant. Jim had cried on returning home after a long hospital stay. Neil said it had been important for him to walk out of the hospital door that he had entered through. Marilyn was proud that she had coped with her oral chemotherapy for CLL and achieved remission.

Other people reacted more cautiously to the news, fearing that the leukaemia might recur. John had adopted a ‘wait and see’ approach. One man said his doctors kept moving the target of how much time should pass before declaring his stem cell transplant a success. First he was aiming for three or four weeks, then 100 days, then 200 days, then a year, and so on. Another man said that his doctors would never say he was cured but that the longer he stayed in remission the better it was.

Recovery from treatment could be a slow and lengthy process, particularly after a stem cell transplant. Some said it had taken longer than they expected for their blood counts to return to normal and tried to avoid catching infections during this time (see Infections and other treatment complications’). At first, fatigue and weakness meant that some people could do little for themselves and slept a lot. Many restored their weight, strength and fitness by taking gentle exercise at first and gradually increasing their activity. Ian got a dog so he would have to go for walks. People who had spent time in intensive care had to learn to walk again, as did Elsa each time she had a stroke because of her thrombocythaemia. As well as looking after herself, Dianne had to care for her husband who'd had heart surgery during her chemotherapy.

People enjoyed gradually resuming normal day-to-day activities, hobbies and sports, and spending time with friends and family. Some travelled abroad, but at first only to destinations that didn’t require inoculations. Several eventually regained their previous level of fitness, got their life back and could plan their future. One woman returned to full-time education after achieving remission from her CML on imatinib (Glivec). Some returned to work (see ‘Work and daily life’).

Despite being in remission from the leukaemia, other people continued to have related health problems. Some people who had received a donor stem cell transplant, later developed a complication called graft-versus-host-disease (GVHD). Symptoms can vary in severity and include a rash, diarrhoea and vomiting, or jaundice. Common treatments include immunosuppressive drugs and steroids, but some cases may be treated with phototherapy involving exposure of the skin or the white blood cells to ultraviolet light.

Fatigue often persisted for a long time after treatment. Elsa learned to listen to her body to gauge how active she could be. Deb found it helped to counter fatigue with exercise rather than rest. Some people caught an infection and had to return to hospital for treatment (see ‘Infections and other treatment complications’). Aley still gets occasional pain from an earlier episode of shingles. Elsa continues to have strokes due to her thrombocythaemia. Others had deep vein thromboses (blood clots). John noticed that if he strained himself during exercise it took longer for aches or injuries to recover. Frances has developed arthritis and poor liver function. Some people explained that if they felt at all unwell they might worry that the leukaemia had returned. After reading an article about possible effects of imatinib (Glivec) on the heart, Chanelle had an episode of heartburn checked out.

Blood tests and check-ups were arranged at intervals starting from several times a week, gradually increasing to yearly. Some people had occasional bone marrow samples taken; Claire had regular chest x-rays after a fungal infection in her lungs. Some people who had spent long periods in hospital initially felt insecure about being away from health professionals. Some worried each time the interval between check-ups was lengthened. Although attending check-ups could provoke fears that tests might show a recurrence of the leukaemia, many people liked their hospital visits because they had good relationships with the doctors and nurses. Aley said the appointments got him out of the house and enabled him to talk about his feelings - he did not like to burden his friends. Ann said check-ups were a positive reminder of her leukaemia experience. Gilly found attending check-ups exhausting and time-consuming and regarded it as 'a job'.

Last reviewed: December 2018.
Last updated: December 2018.

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