Recurrence or relapse

The aim of leukaemia treatment is to achieve remission – a state in which no leukaemic cells can be found in the blood or bone marrow and the bone marrow works normally.  Ideally, remission would last a lifetime, but some patients will relapse, meaning their leukaemia recurs. In chronic lymphocytic leukaemia (CLL), for example, which is currently incurable, periods of remission are interspersed with periods in treatment (see ‘Chemotherapy and how it is given’).

People with chronic myeloid leukaemia (CML) need continuous treatment to keep their symptoms at bay. Having got her CML under control through a combination of imatinib (Glivec) (standard biological therapy for CML), a restrictive diet and complementary therapies, one woman found that stress of a new relationship was having a detrimental effect on her health and she began to experience leukaemia symptoms again. 

Most cases of CML are diagnosed when they are in the so-called ‘chronic’ phase in which the condition can remain stable for a long time. Eventually the leukaemia may move into an ‘accelerated’ and then a ‘blast’ phase in which immature or ‘blast’ cells overwhelm the blood and bone marrow. When this happens intensive treatment, akin to that given for acute leukaemia, is needed to regain remission. This ‘transformation’ from one phase of CML to another had not happened to anyone we spoke to, but Elizabeth had a similar experience. After a period in which her CML had been stable, she began to feel unwell again and was eventually told she had developed a form of acute myeloid leukaemia (AML) that was not related to her CML and may have arisen from an underlying myelodysplastic condition.

After spending several months in hospital having intensive treatment, many people with acute leukaemia achieve remission and treatment stops. If their remission lasts for several years they are considered cured. Unfortunately not everyone is so lucky and the leukaemia returns. This is called a recurrence or relapse. Recurrences may be treated with different drugs or combinations of drugs from those that were used before, because the leukaemia may have been resistant to the original treatment. Gilly’s AML relapsed only four months after finishing intensive chemotherapy. Her recurrence was treated with an allogeneic (donor) stem cell transplant, which achieved another remission.
Joanna’s husband’s AML relapsed after nearly five years in remission. The risks of a stem cell transplant were considered too great but he was given a variety of chemotherapies and other treatments, none of which worked for long. Joanna realised that her husband was going downhill but found it difficult to deal with, as he did not seem to want to discuss it. A series of small strokes then reduced his ability to communicate. The lack of communication between them made it hard for her to know how best to help him.
Joanna found watching her husband’s gradual decline upsetting and wondered whether the experience was harder for him or for her, saying, “You know it’s worse to be inside than to be watching it, at one level. At another level, if you’re inside it you’re dealing with it and so maybe it’s not so bad. I don’t know.”
Her husband gradually became less mobile and Joanna got a wheelchair for him. She also got a hospital bed to put in the living room at home and an emergency alarm system that she used to get help when he fell and she couldn't lift him up. Joanna knew that her husband was dying and arranged for hospice care to be provided at home. The health professionals seemed reluctant to say how soon he might die, so in the last few days she couldn't tell how close he was to death. Looking back she feels that his death could have been managed better.
Last reviewed: December 2018.
Last updated: August 2015.

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