Leukaemia

Symptoms of leukaemia

Although symptoms depend on the type of leukaemia, most people with acute leukaemia tend to feel generally unwell or run down, accompanied by any of the following:
 
• tiredness, breathlessness and looking pale (due to a lack of red blood cells),
• frequent infections (due to a lack of white blood cells),
• unusual bleeding or bruising (due to a lack of platelets).

Patients with chronic leukaemia may have some or all of these symptoms but often are diagnosed by chance when having blood tests for other reasons.

People found it hard to describe their sense of feeling generally unwell. Elaine said, 'I just didn’t feel quite right'. Neil said that one day when he was driving he knew he shouldn’t be on the road. It could be difficult to distinguish between symptoms of illness and the effects of stress, the menopause or natural aging, and often the significance of certain symptoms was recognised only in hindsight.

The tiredness that some people had was different from any they had felt before. Dianne called it ‘a very peculiar type of tiredness’. Janet said it felt as though her batteries were run down. Several felt lethargic. Many had struggled to get up in the mornings or to stay awake during the day. Some were exhausted when they got home from work and had collapsed on the sofa and slept. Jane, a teacher, had not felt rested or refreshed after the school summer holiday. Tiredness often interfered with people’s ability to do their normal daily activities, and some people could not cope with normal levels of physical exertion, such as playing sports or rambling, and assumed they had become unfit. One woman felt so unfit that she employed a personal trainer. Gilly said she felt as if she was walking through treacle. Some people also became breathless, for example when going upstairs or rushing to catch a bus.

Many people reported having frequent coughs, colds, viruses and ear infections that kept recurring despite antibiotic treatment. Thelma had an eye infection, Ann a boil on her leg, and Jeff had an infected navel. Ann also had continual vaginal thrush (a fungal infection) that would not go away despite using antifungal creams and removing all yeast-based foods from her diet.

Some people complained that minor injuries were slow to heal. Others had bleeding gums or unusually heavy menstrual periods. Chanelle had a blood vessel burst in her eye causing visual problems. Often the smallest knocks caused large bruises and some people developed a rash of purple spots on the skin.

Other, less common, symptoms of leukaemia may be caused by a build-up of leukaemia cells in a particular area of the body. These include: aching bones or joints, raised purple areas under the skin, swollen lymph nodes, swollen gums, a feeling of fullness or lump in the abdomen due to an enlarged spleen, which may also lead to indigestion or loss of appetite. Some people also experience fevers or sweats, weight loss, generalised itching, weakness or chest pain.

Bone or joint pain was common. Two people mentioned skin rashes. Several people developed swollen lymph glands on the head and neck, chest, groin or armpits. A few people had spleen enlargement, one saying it caused a dull ache, another complaining of a heavy feeling in the abdomen. Some had lost their appetite or felt full after eating very little.

Several said they had lost weight but did not necessarily worry; one woman had been trying to lose weight anyway, another had been training for a marathon. Marilyn, in her fifties, described hot flushes but couldn’t be sure whether they were caused by her chronic lymphocytic leukaemia (CLL) or by the menopause. Deirdre experienced swollen hands some years before her CLL diagnosis and wasn’t sure if this could have been the first symptom.

In acute leukaemias, the symptoms usually come on suddenly and may continue to worsen between diagnosis and when treatment starts to work. Within 24 hours of having walked into hospital Dianne’s body had turned black all over from bruising, she was doubly incontinent and could no longer do anything for herself. Similarly, Gilly said that within three days of admission to hospital she was moved to intensive care. During his chemotherapy for acute myeloid leukaemia (AML) Deb developed back pain and problems with speech and balance that were caused by the leukaemic cells spreading into his cerebrospinal fluid.

By contrast, in chronic leukaemias the symptoms usually develop slowly over a period of time and treatment may not be needed immediately (see ‘Watch and Wait’ and ‘Living with the symptoms of CLL’).

Not everyone experiences or is aware of symptoms in the early stages. Their leukaemia may be diagnosed on a routine blood test or when investigating other conditions. Brian had a blood test to investigate the cause of a problem with a tendon in his hand. Susan was having regular blood tests to monitor a mild heart condition when her MDS myelodysplastic syndrome (MDS) was discovered. MDS is a bone marrow disorder which is often diagnosed by chance but some patients become anaemic and have an increased tendency to infection and bruising. About a quarter of patients with MDS will progress to acute myeloid leukaemia over a period of months or years. Blood tests taken before or after a hip replacement operation led to two people’s leukaemia being diagnosed. A private health check, which included a blood test, led to the discovery of Len's leukaemia. Some people recognised their leukaemic symptoms only with hindsight after the diagnosis.

Susan had no symptoms when her MDS was diagnosed and has had no treatment but is now feeling increasingly tired and has had two nasty bouts of bronchitis, to which she is vulnerable. Elsa, whose treatment for MDS consists of regular blood transfusions, knows when she needs one as she recognises the symptoms: exhaustion, breathlessness, feeling emotional and fuzzy-headed.

*AML – Acute myeloid leukaemia
 ALL – Acute lymphoblastic leukaemia
 CML – Chronic myeloid leukaemia
 CLL – Chronic lymphocytic leukaemia

Last reviewed: August 2015.

Last updated: August 2015.

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