Living with the symptoms of CLL

Most people with chronic lymphocytic leukaemia (CLL) don't need immediate treatment when the diagnosis is made. Their condition is regularly monitored by the specialist until the illness changes and treatment is considered necessary (see ‘Watch and wait’). During this time symptoms may develop or change. While some people we spoke to could live normally with their symptoms, the daily lives of others were increasingly affected in various ways.
People with CLL commonly complained of tiredness and lack of energy. Several people were not sure how much was due to the illness and how much to increasing age. A woman in her seventies complained of feeling tired from the neck upwards but her consultants didn't say whether this was a symptom of her CLL or not.
Some said their tiredness came and went, so they had good and bad episodes. Beverley, aged 54, said extreme tiredness at times had made her feel "twenty years older" than she was, which had been difficult to accept. Sometimes tiredness is caused by autoimmune haemolytic anaemia (AIHA), a complication of CLL in which red blood cells break down, which needs medical treatment.
Janet said that a hormonal treatment that she had for breast cancer made her tiredness worse. Jimmy blamed his tiredness on interrupted sleep caused by feeling hot in bed. Day and night sweats can be symptoms of CLL but Jimmy said that his predated the illness and Jane couldn’t be sure that hers weren’t due to the menopause. Marie also complained of difficulty sleeping sometimes.
Other symptoms mentioned were a vulnerability to chest infections, breathlessness, palpitations, muscle cramps, aching bones and joints, swollen lymph nodes, bruising, nose bleeds, cuts and injuries taking a long time to heal, and an increased sensitivity to insect bites and stings. Jean had an episode of chest pain due to severe anaemia; Deirdre had a bout of food poisoning that left her gut very sensitive for a few months. Marilyn thought that stress at work and depression before the CLL probably added to her fatigue.
Over time people with CLL had developed ways to manage their lives that allowed for their tiredness. Learning to pace oneself and taking afternoon naps were common strategies. Beverley said she prepared things well in advance, such as packing for a holiday, cleaning the house for guests, or just making the evening meal at lunch time. When Deirdre was in one of her ‘dips’ she would do only what she had to do and leave other things undone. Several people said that if they did too much on one day they would be flaked out for several days afterwards and have to rest more. Jane and Marie said that to counter tiredness they tried to keep as fit and well as possible; Deirdre tries to keep her mind occupied and consider those who are worse off than herself.
As a result of tiredness and other symptoms people with CLL said they could no longer do all that they used to do. They accepted that they would miss out on certain things they wanted to do. Some went out less to shop or to social events because travelling was tiring, some couldn't manage to go to things in the evenings. For some, this meant less contact with friends and family and a growing sense of isolation. Some people avoided public places at times in order to avoid catching infections. This occasionally kept Beverley away from her grandchildren. Housework and gardening were also a problem, especially for those who couldn't afford paid help and had an unwell or elderly partner. Beverley weeded her garden in stages now, whereas before she would have done it all in one day.
Janet put on weight through inactivity and didn't have the energy to go shopping for new clothes. She had to cancel holidays and her reduced social life and increased isolation made her feel depressed. But she had not let her brain moulder. She did an Open University degree and other courses and is doing research to mount museum exhibitions. Some people continued all their daily activities despite their symptoms, even while having treatment. Marilyn suggests that people should try to accept the illness as part of their life.
Beverley’s CLL symptoms were relieved somewhat by giving up work, which she did because of health problems unrelated to the leukaemia. Some people had received treatment which had alleviated their CLL symptoms temporarily. Some were enjoying a symptom-free remission when we saw them, while in others the symptoms were getting worse again. After several courses of chemotherapy and immunotherapy Michael’s (Interview LEU22) CLL appears to have been cured by a stem cell transplant. He is as fit and well as he has ever been. Stem cell transplants are not used routinely to treat CLL but may be used after all other treatments have been tried, or as part of a clinical trial. Rani says her symptoms have gone away without medical treatment; she has altered her lifestyle and used a variety of complementary approaches (see ‘Complementary approaches and lifestyle changes’).
Leukaemia Care also has a useful leaflet on living with watch and wait the link can be found in our  'Resources section'.

*  CLL – Chronic lymphocytic leukaemia

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

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