Leukaemia
Symptoms of leukaemia
- 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 these symptoms but are often diagnosed by chance when having blood tests for other reasons.
People we interviewed describe their symptoms as a feeling of general unwellness. Elaine said, 'I just didn’t feel quite right', and 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, menopause, or natural aging. Often, the significance of certain symptoms was recognised only in hindsight.
Ann had started to feel generally unwell before having repeated bouts of tonsillitis accompanied by lethargy leading up to her AML* diagnosis.
Ann had started to feel generally unwell before having repeated bouts of tonsillitis accompanied by lethargy leading up to her AML* diagnosis.
Ian's life was very stressful before his ALL* diagnosis so he and his doctors found it difficult to separate the physical from the emotional symptoms.
Ian's life was very stressful before his ALL* diagnosis so he and his doctors found it difficult to separate the physical from the emotional symptoms.
Tiredness
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 and 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, said she had not felt rested or refreshed after the school summer holiday.
Tiredness often interfered with people’s ability to do normal daily activities, and some people couldn't 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 up stairs or rushing to catch a bus.
Despite being sporty and in a happy new relationship, she couldn't understand why she felt so tired before her CML* diagnosis. She couldn't cope with physical exertion and kept falling asleep.
Despite being sporty and in a happy new relationship, she couldn't understand why she felt so tired before her CML* diagnosis. She couldn't cope with physical exertion and kept falling asleep.
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I’d had a pretty miserable marriage. Came out of it and really spent some time getting my life back together. I sold a property in London so I was ready to do things I wanted to do. But I was tired, seriously tired, and I couldn’t understand why because all my worries and stresses had gone. I was divorced, the husband had gone, I’d got a super new chap in my life and money which meant I could do what I wanted. And so I got a personal trainer, I thought I wasn’t fit enough. And I remember him saying one day, ‘Come on you’re just not trying hard enough.’ And I was giving it my all. I’ve always been sporty. And friends said, ‘Ah yeah but you’re getting older.’ And I thought, ‘No.’ You know, Margaret Thatcher survived on four hours sleep a night and I’d always been a night person.
There was clearly something going on and, yes I was a mother but by four o’clock in the afternoon I actually couldn’t get upstairs. I was crawling on all fours. I fell asleep reading to my son every night. However many people told me I was fine, I was not fine. I remember going to one friend’s house and she said, ‘How are you?’ I said, ‘I’m exhausted.’ And she said, ‘Oh people don’t really want to know how you are.’ It was so so hard to get out of bed. I knew there was something wrong.
Before her CLL* diagnosis Rani's energy levels had dropped and she found it difficult to cope with looking after her elderly mother as well as her young daughter.
Before her CLL* diagnosis Rani's energy levels had dropped and she found it difficult to cope with looking after her elderly mother as well as her young daughter.
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About a year before I was diagnosed with leukaemia I was feeling down, under the weather, like, and not feeling quite all right. And I actually went to my GP and said, “I don’t have that energy which I used to have”. And he teased me about it and said, “Ah well, you’re getting older now, aren’t you?” But I knew something was not quite right inside me but could not pinpoint what it was and I felt my energy level had gone down. And I was not coping well.
What do you mean not coping? How did that manifest itself?
It was a bit of a struggle to get through well all the things I need to do and I had to put in so much effort. And there were times when I felt “Oh no, do I have to do this?” Like that, you know, sort of not quite up to it, that feeling I had.
So what did you do next?
Well then of course I was still at that time looking after my mother as well, and her condition got worse and worse. She had a minor stroke and then in August she had a big heavy one and she needed quite a bit of help to go up the stairs. And I remember one day she went, there was only one more step for her to do and she just refused, I’m not sure if she lost courage or she felt she couldn’t do it any more, and I had to literally pull her up, and she’s heavier than me and it took, it was hard work, and she needed so much care and constant attention, what with looking after my daughter and doing all the things. And I felt very irritable I should think. I was getting cross with everybody too. I was just trying to do so many things at the same time, getting cross with my mother as well.
Despite being sporty and in a happy new relationship, she couldn't understand why she felt so tired before her CML* diagnosis. She couldn't cope with physical exertion and kept falling asleep.
Despite being sporty and in a happy new relationship, she couldn't understand why she felt so tired before her CML* diagnosis. She couldn't cope with physical exertion and kept falling asleep.
Before her CLL* diagnosis Rani's energy levels had dropped and she found it difficult to cope with looking after her elderly mother as well as her young daughter.
Before her CLL* diagnosis Rani's energy levels had dropped and she found it difficult to cope with looking after her elderly mother as well as her young daughter.
Recurring infection
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 (see 'Recurrent Vulvovaginal Thrush') that would not go away despite using antifungal creams and removing all yeast-based foods from her diet.
Frances experienced many colds and flu and ear infections before her ALL* diagnosis; she had attributed them to stress and burn out.
Frances experienced many colds and flu and ear infections before her ALL* diagnosis; she had attributed them to stress and burn out.
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.
Michael went to his GP when scratches on his hands sustained while gardening were not healing. A blood test subsequently identified AML*.
Michael went to his GP when scratches on his hands sustained while gardening were not healing. A blood test subsequently identified AML*.
Other symptoms of leukaemia
Other 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
- a lump in the abdomen due to an enlarged spleen, which may also lead to indigestion or loss of appetite
- fevers or sweats
- weight loss
- generalised itching
- weakness
- 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 an enlarged spleen: one person said this symptom caused ‘a dull ache’, while another complained of ‘a heavy feeling’ in the abdomen. Some lost their appetite or felt full after eating very little.
Several said they lost weight, but did not necessarily worry them: one woman had been trying to lose weight anyway, another had been training for a marathon. Marilyn, who was in her 50s, described hot flushes and wasn't sure whether they were caused by her chronic lymphocytic leukaemia (CLL) or by menopause. Deirdre experienced swollen hands some years before her CLL diagnosis and wasn’t sure if this could have been the first symptom.
Before her CLL* diagnosis Marie experienced pains in her neck, arms and legs, which her doctor thought was rheumatism. She later developed a nagging pain in her groin.
Before her CLL* diagnosis Marie experienced pains in her neck, arms and legs, which her doctor thought was rheumatism. She later developed a nagging pain in her groin.
Before his CML* diagnosis Mark had various symptoms including excessive sweating both at night and during the day, and shortness of breath on exercise.
Before his CML* diagnosis Mark had various symptoms including excessive sweating both at night and during the day, and shortness of breath on exercise.
In acute leukaemia, symptoms usually come on suddenly and may continue to worsen between the time of diagnosis and when treatment starts to work. For example 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 3 days of admission to hospital she was moved to intensive care.
During 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, 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 their symptoms in the early stages. Their leukaemia may be diagnosed on a routine blood test or during investigation of 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 myelodysplastic syndrome (MDS) was discovered.
Myelodysplastic syndrome (MDS) and leukaemia
MDS is a group of rare blood cancers that are often diagnosed by chance. With all types of MDS, the bone marrow produces faulty blood cells. There are different types of MDS, and how the faulty blood cells behave determines the type of MDS that is diagnosed. Blood cells affected by MDS either do not develop fully into healthy blood cells (they stay in an immature stage), or they develop into abnormal cells that do not act as they should (Blood Cancer UK, 2024). More information about MDS and its types may be found on Blood Cancer UK’s website in the ‘Myelodysplastic syndromes (MDS)’ section (see 'Resources and Information').
Some people with MDS become anaemic and have an increased tendency toward infection and bruising. Symptoms of MDS vary by type and depend on which type of blood cell (white, red, etc.) is affected. In about a quarter of people with MDS, the disease progresses 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 leukemic symptoms only with hindsight after the diagnosis.
Susan had no symptoms when her MDS was diagnosed and had no treatment but later began feeling increasingly tired and also had two ‘nasty bouts of bronchitis’, to which she was vulnerable. Elsa, whose treatment for MDS consisted of regular blood transfusions, said she knew when she needed one because she recognised her symptoms: exhaustion, breathlessness, feeling emotional, and fuzzy-headed.
Michael's CLL* was diagnosed on a blood test for a routine cholesterol check.
Michael's CLL* was diagnosed on a blood test for a routine cholesterol check.
Aley was diagnosed with biphenotypic acute leukaemia (BAL), a mixture of myeloid and lymphoblastic leukaemias, after going to give blood. He had no symptoms.
Aley was diagnosed with biphenotypic acute leukaemia (BAL), a mixture of myeloid and lymphoblastic leukaemias, after going to give blood. He had no symptoms.
ALL – Acute lymphoblastic leukaemia
CML – Chronic myeloid leukaemia
Last reviewed: January 2025.
Last updated: January 2025.
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