Leukemia

Information

Leukemia is cancer of the blood. It starts in cells in your bone marrow, where your body makes blood cells. There are many types of leukemia; some can be cured, others can be controlled and managed long-term. It’s estimated that around 390,000 people live with leukemia in the United States and about 30,000 in the UK. 

What is leukemia?

Leukemia is cancer of your blood cells and bone marrow. Blood broadly has three types of cells: red for carrying oxygen, platelets for clotting, and white cells that fight infection. Leukemia mainly affects your white blood cells, causing them to multiply rapidly and develop abnormally. They swamp the bone marrow, where blood cells are made, and spill into the bloodstream. 

The abnormal white cells don’t fight infection as they should and can ‘crowd out’ other blood cells, leaving your blood short of oxygen and with less ability to clot or deal with infections. Eventually the leukemia can affect other parts of your body. 

There are numerous types of leukemia and many subtypes. The most common types are:

  • chronic lymphocytic leukemia (CLL)
  • acute lymphoblastic leukemia (ALL)
  • chronic myeloid (or myelogenous) leukemia (CML)
  • acute myeloid (or myelogenous) leukemia (AML)

The type of leukemia you have depends on exactly which types of cells are affected and how quickly the disease develops. CLL and ALL start in white blood cells called lymphocytes, which mainly fight viruses. CML and AML start in white blood cells called myeloid cells, which, among other things, fight bacterial infections and limit the spread of tissue damage. 

Acute leukemia develops very quickly – over a few weeks – and treatment generally needs to start immediately once it’s diagnosed. With early diagnosis and treatment, both ALL and AML can often be cured or put into full remission. 

Chronic – long-lasting – leukemia develops slowly, often over many years, and may not need immediate treatment; in some cases, no treatment is needed unless the condition worsens. Chronic leukemia can’t usually be cured but can be kept under control, or in remission where there’s no evidence of the disease even though it’s not actually been cured.

Anyone, including children, can get leukemia. It is the most common childhood cancer though it’s rare among children and much more likely for older adults. 

  • CLL is most common in people over 60 and rare under age 40 – children almost never get it. 
  • CML is mostly found in people in their 60s but can occur at any age, though it’s very rare in children. 
  • ALL is rare, with fewer than 6,000 new cases a year in the US and around 800 in the UK. About half of cases are in adults and half in children, of whom most are under 10.
  • AML becomes more likely the older you are and is most often found in those over age 65, though about 20 per cent of children with leukemia have AML.  

Each type of leukemia behaves differently, and the treatment for each differs because of this. 

‘Find out what your exact diagnosis is and what is important to know. Get informed so that you know what you are dealing with, then find the right doctor and treatment for you’

– response in survey among people with leukemia on HealthUnlocked, 2018

Symptoms also differ, as do prospects for surviving the illness. Overall survival rates have improved dramatically over past decades. In the UK, for example, the proportion of people living more than 10 years after diagnosis in the 1970s was just over 5 per cent – it’s now at over 46 per cent. Children do better than adults, with overall survival rates well over 80 per cent. However, your individual outlook depends on the type of leukemia you have and many other factors, including your age and general level of health.

Because the types of leukemia differ, take care that any information you find for yourself is about the right leukemia type.

“Stay focused on positives, what you can control such as diet, exercise and taking care of yourself”

– response in survey among people with leukemia on HealthUnlocked, 2018

What are the symptoms of leukemia?

Leukemia can produce a wide range of symptoms. In acute types any symptoms usually appear and worsen rapidly within a few weeks. In chronic types symptoms may be vague, mild or not apparent at all – CLL and CML are often found through routine blood tests or investigations for other conditions.

Some types have specific symptoms that don’t usually appear in other types. But in general, symptoms of leukemia can include:

  • Tiredness
  • Breathlessness
  • Being pale
  • Getting frequent infections 
  • Easily bruising and bleeding, for example nosebleeds or bleeding gums
  • Night sweats
  • Unexplained weight loss
  • Tenderness or pain in the abdomen
  • Swollen lymph glands in the armpits, neck or groin 
  • Blurred or disturbed vision

In ALL and CML people often have bone or joint pain; ALL can cause a purple skin rash, headaches, fits and vomiting; AML can produce severe infections and internal bleeding.

You are unlikely to have all the symptoms and there are many conditions other than leukemia that can cause them. If you have symptoms that don’t go away, you should see your doctor.

‘My symptoms included pain in my joints, night sweats, and fatigue. I thought I was getting arthritis!’

– response in survey among people with leukemia on HealthUnlocked, 2018

How is leukemia diagnosed?

Apart from any symptoms, the first clue that someone has leukemia is usually through blood test results that show abnormal cells are present. 

A test called a full blood count (FBC) will be used and will show how many red cells, platelets and white cells are in your blood. This test might be done because leukemia is suspected, or as part of a routine check or investigation for something else.

If the FBC result suggests leukemia, the next step is usually a bone marrow biopsy, where a tiny sample of bone marrow, and sometimes a sample of bone, is taken with a needle to be examined under a microscope and tested in other ways. This can confirm leukemia. For CLL the diagnosis might be made without the need for a bone marrow test. 

Laboratory testing of abnormal cells from your blood or marrow will show the type or subtype of cell that is affected; this will indicate which type of leukemia you have.

A range of other tests may be done to assess the condition and find out whether it has spread or damaged other organs. Blood chemistry tests can also pick up liver or kidney damage.

You may have a lumbar puncture, in which a needle is used to take some fluid from around your spinal cord – this is most often done for ALL or AML to find out if the leukemia has spread to your brain or spinal cord. 

You might also have imaging checks, such as an X-ray, MRI, or ultrasound. These can be used to look for effects of leukemia on the brain (MRI), bones, or the spleen, kidneys and liver. In some cases, a CT scan is used to check lymph nodes in the chest and examine other organs such as the heart and lungs.

In acute leukemia, you might have a lymph node biopsy to examine any swollen lymph nodes and help determine how far the disease has spread.

Staging

As with all cancers, the stage of your leukemia – that is, how advanced it is – can play a key role in deciding the best treatment. During diagnosis and subsequent testing, your leukemia is assessed to see the stage it is at. It might be classed as a subtype in staging – AML, for example, has eight subtypes. 

Leukemia staging varies depending on the leukemia type and is described in stages, phases or subtypes. It can be based on blood cell counts, on the amounts of leukemia cells found in organs such as the spleen or liver, or – in the case of acute leukemia – on the types of cells and what they look like with a microscope.

For CML and AML (myeloid leukemia), the number of immature white blood cells (myeloblasts) in your blood or bone marrow can be used in staging. Your white blood cell count might be used for staging if you have CLL or ALL (lymphocytic leukemia). 

What causes leukemia?

Though scientists understand a great deal about how leukemia starts and develops, what actually causes it is not known. In CLL, CML and AML, more men than women are affected, and, except for AML, being older generally increases the risk of leukemia. 

Aside from gender and age, there are other risk factors that increase your chance of getting some types of leukemia. But not everyone with the risk factors gets leukemia and many people with leukemia don’t have any of the known risk factors.

Risk factors

Things that have been identified as raising the risk of leukemia include:

  • Having had chemotherapy for other cancers appears to increase your risk of developing leukemia, particularly acute types.
  • Having been exposed to high levels of radiation can increase the risk of leukemia – this includes previous treatment with radiation (radiotherapy) for other cancers.
  • Having been exposed to some industrial chemicals, for example benzene, has been linked —some types of leukemia.
  • Smoking has been linked to an increased risk, particularly for acute leukemia types. Cigarette smoke contains benzene, among many chemicals.
  • Having certain genes or a genetic disorder, like Down’s syndrome, appears to raise the risk of leukemia.
  • People with weakened immune systems, such as in HIV or because of medication, have a higher risk of leukemia.
  • Having a close family member with leukemia may increase your risk slightly, but the condition doesn’t run in families and isn’t passed on to children. However, if one identical twin gets it, the other has a higher risk of having it too.

What are the effects of leukemia?

Many people with a chronic leukemia may not have any symptoms and might not notice any effects for many years, or in some cases at all. Eventually, however, leukemia can spread to organs including your lymph nodes, spleen, liver, brain and spinal cord, and elsewhere. 

Having too few healthy red blood cells (anaemia) reduces the amount of oxygen delivered to your body through the bloodstream. Having too few platelets (thrombocytopenia) stops the blood clotting so makes it hard for the body to stop any bleeding. And having too few healthy white blood cells leaves you open to infections – the main cause of death in leukemia. 

“In the short term I was worried it would have an impact, and sometimes acted accordingly; these days it’s very much in the background”

– response in survey among people with leukemia on HealthUnlocked, 2018

How is leukemia treated?

There’s a range of possible treatments for leukemia. Your treatment options depend on the type of leukemia you have and how severe it is, whether other organs are affected, and how healthy you are otherwise. The main options are:

  • ‘Watch and wait’ – some types of leukemia, such as CLL, can progress so slowly that treatment isn’t needed. Your condition will be monitored in case treatment becomes necessary
  • Chemotherapy – which uses powerful medication to kill cancer cells
  • Radiation (radiotherapy) – in which high-energy X-rays are used to kill cancer cells or stop them growing
  • Biological therapy (immunotherapy) – medications which stimulates your own immune system, so your natural defences can attack the cancer cells
  • Targeted therapy – which uses medication that targets specific genes or proteins that cancer cells need for growth
  • Stem cell transplant – in which new stem cells from blood or bone marrow, either your own healthy ones or donated cells, are used to replace your cancerous cells. Once in your bloodstream the new stem cells should grow to become healthy blood cells
  • Surgery – may be used, for example, if your spleen fills with leukemic cells and swells. It can then press on other organs causing pain or discomfort. An operation called a splenectomy can remove the spleen.
  • Blood transfusions – people with leukemia commonly need at least some blood transfusions to bolster levels of particular blood cells – such as red cells or platelets – that are in short supply because of the leukemia.

Your exact treatment is likely to be a combination of some of the treatments mentioned and depends on many factors. There are also new treatments being developed. However, typical initial treatments for different types of leukemia are:

  • CLL – often needs no immediate treatment but if it progresses chemotherapy and immunotherapy may be used. Stem cell transplants are possible but rare. 
  • CML – can be successfully treated with a targeted therapy called a tyrosine kinase inhibitor (TKI). In most cases, TKIs can halt disease progression. Where TKIs don’t control CML, a stem cell transplant can be used. 
  • ALL – is usually treated with chemotherapy. In some cases, a stem cell transplant is used
  • AML – is usually treated with chemotherapy, which may be followed by a stem cell transplant to stop the cancer returning

Living with leukemia

Leukemia, like most long-term conditions, can have an impact on many areas of your life beyond the immediate medical concerns. 

The condition itself – and some of the treatments – can leave you tired and lacking energy, which can affect work, study, social life and relationships. There may be costs in travelling for treatment and so on and possibly less money coming in if you’ve had to stop work or cut your hours.

Such pressures, along with the worry of having blood cancer, can lead to a low mood, anxiety or depression so it’s important to take care of yourself physically, emotionally and mentally.

“There are periods of time I am fatigued and need to rest. During those times I have accepted I need to take a break and rest. My treatment has some side effects, but the overall benefits outweigh the negatives”

– response in survey among people with leukemia on HealthUnlocked, 2018

It’s a good idea to try to learn as much as you can about your own leukemia – the more you understand about the condition the better you are likely to be able to manage it. You’ll know what your options are and be more confident in asking questions of your medical team. 

Infections

Minor infections can quickly become serious for people with leukemia, so you should get any illness checked, especially if it seems to worsen. Chemotherapy medicines and other treatments all come with side effects, some of which can produce unpleasant symptoms. Again, talk to your medical team – there’s often lots that can be done to help you feel better.   

Shingles, a nerve and skin infection caused by the chickenpox virus, is common in leukemia – it’s estimated that 50 per cent of people who have a stem cell transplant and many who’ve had chemotherapy, get it. It needs treatment promptly because, although not dangerous itself, it can lead to serious and long-lasting complications. 

Shingles usually starts with pain on one side of the body or other, itching or tingling, and a rash with weeping blisters or sores. 

You should make sure you have an annual flu vaccination – influenza can be serious for anyone and can lead to pneumonia.  

Exercise

If you already do regular exercise, keep doing it. If you don’t, you should try to do some activity each day. How much and what you can do will depend on your general health and level of fitness. 

Apart from formal exercise, almost anything counts as physical activity – walking, gardening, dancing, cycling all count. Because of your condition, or its treatment, you might have fatigue and not feel like doing much. 

There is evidence, though, that being active can in fact make you feel less tired and generally make symptoms less severe. Exercise can also lift your mood, improve your appetite, help you keep a healthy weight and make you sleep better, which all goes towards making you healthier. 

There’s no special exercises that can help leukemia directly, but the fitter you keep yourself the better you’ll be able to cope with the rigours of treatment and any infections.

“Since I am in ‘watch and wait’ at this point I am striving to improve my diet and daily exercise program and I try to avoid germs!”

– response in survey among people with leukemia on HealthUnlocked, 2018

Diet

Along with being active, it’s important to eat a healthy diet. There’s no special diet for people with leukemia, though some people may be given dietary advice by their healthcare team. 

You should aim for a healthy balanced diet that is low in fat, sugar and salt, and includes plenty of fruit and vegetables – at least five portions a day is recommended. Essentially you need a diet that would be good for just about anyone. 

You need carbohydrates, from starchy food like potatoes, bread, rice and pasta; protein, from meat, fish, eggs, beans, nuts and pulses; and, for calcium, dairy products such as milk, yoghurt and cheese. 

You will need to take extra care over food hygiene to avoid the risk of infections. All fruit, veg and salad should be thoroughly washed, raw and cook meats should be kept separately in the fridge, you should take note of ‘use by’ dates and ensure that everything is properly cooked. And you should, of course, wash your hands before cooking and keep work surfaces spotless.  

Complementary therapies and supplements

Some people find complementary therapies, like massage, meditation or acupuncture, help them feel better. While there’s no evidence that these things can help leukemia directly, they do help some people manage symptoms and keep up a sense of wellbeing.

There are also lots of herbal preparations and supplements that you might be tempted to try, and some may be helpful. But it’s important to talk through with your doctor any therapies or supplements you intend to use in case they conflict with medication you are on. You should also take care that any over-the-counter medicines you use won’t interact with your leukemia medication.

‘Don’t discount the benefits of alternative ideas and lifestyle choices in conjunction with traditional medicine.’

– response in survey among people with leukemia on HealthUnlocked, 2018

Support for people with leukemia

Many people find they get great advice, support and information by talking to others with leukemia. Local support groups offer the opportunity for patients and people caring for them to meet others face-to-face. Online forums and communities are other ways to find support and let you ask questions and join discussions. 

“Find others with similar diagnosis and read their stories, chat to them”

– response in survey among people with leukemia on HealthUnlocked, 2018

Your healthcare team may be able to suggest local groups you could join, and most big leukemia or cancer support organizations can direct you to networks of groups and help you find one near you. They also have good practical information about living with leukemia. You can find support groups through:

Online support

There are many online communities, Facebook groups and so forth for people with leukemia and cancer in general. You could start by visiting the CLL Support Association community at HealthUnlocked, the Leukemia & Lymphoma Society community or the CML Support community.

‘Get as much information as you can and join HealthUnlocked.’

– response in survey among people with leukemia on HealthUnlocked, 2018

Resources consulted in preparing this information

All sources mentioned were accessed during March 2018

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