Symptoms of chronic myeloid leukemia

Many people don’t have symptoms when they are diagnosed. Their leukaemia is discovered by chance when a blood sample is taken for another reason.

If there are symptoms in the early stages of CML, they come on gradually and are usually mild. Symptoms may include:

• tiredness
• loss of appetite
• weight loss
• high temperatures (fever) and night sweats
• a feeling of fullness or a tenderness on the left side of the tummy area (abdomen) caused by an enlarged spleen. The spleen is an organ just below the ribs on the left side of the abdomen. It filters the blood to keep it clean and helps protect against infection.

If CML has been developing for some time, symptoms may be more noticeable and may include:

• frequent infections
• looking pale and feeling tired or breathless
• bleeding or bruising easily
• swellings in the neck, groin or armpit
• small bumps in the skin
• itching.

If you have any of the these symptoms, it’s important to see your doctor, but remember, they are common to many illnesses other than CML.

How chronic myeloid leukaemia is diagnosed?

There are few, if any, symptoms of CML to begin with. This means that it’s quite common for people with CML to be diagnosed by chance when they have a blood test for some other reason. The blood test shows a high number of white blood cells.

At the hospital

If your GP suspects you may have CML, they will refer you to a haematologist at the local hospital for specialist advice and treatment.

A haematologist is a doctor who specialises in the treatment of blood problems. The haematologist will examine you and ask about your general health and any illnesses you’ve had. They will also take blood samples to check the numbers of cells in your blood (a full blood count) and to look for leukaemia cells. If the blood test finds any leukaemia cells, the doctor will want to take a sample of your bone marrow. This will give them information to help plan your treatment.

Bone marrow sample/biopsy

In this test a small sample of bone marrow is taken from the back of the hip bone (pelvis). The sample is examined under a microscope to see if it contains any leukaemia cells.

You may be offered a sedative before the test to reduce any pain or discomfort. The bone marrow sample is normally taken under a local anaesthetic. The doctor injects some local anaesthetic into the skin and around the bone to numb it. They then pass a biopsy needle through the skin into your bone. A small sample of liquid marrow (bone marrow aspirate) is drawn into a syringe to be looked at later under a microscope. The doctor then uses a different needle to take a small core of marrow from inside your bone (a trephine biopsy).

The test can be done on the ward or in the outpatients department, and takes about 15-20 minutes. When the liquid marrow is drawn into the syringe you may feel some discomfort, but this only lasts a few seconds.

A sample of bone marrow is usually taken from the back of the hip bone

You may feel bruised and sore after the test and have an ache in your back or leg for a few days. This can be eased with mild painkillers. It can take about a week to get the results of a bone marrow biopsy.

Further tests

You may have additional tests including:

A chest x-ray: A chest x-ray which is taken to check that your heart and lungs are healthy.

A PCR (polymerase chain reaction) test: This is a blood test that measures Bcr- Abl transcripts, special molecules made by the abnormal Bcr-Abl gene usually present in CML. It’s a very sensitive test and can detect tiny amounts of leukaemia that can be missed by other tests. It’s used for measuring low levels of leukaemia after treatment begins.

Phases of chronic myeloid leukaemia

CML is a blood and bone marrow disease that develops slowly. There are three possible phases. The phase is determined by the number of blast cells in the blood and bone marrow and by the extent of your symptoms.

The chronic phase

Most people are diagnosed when the CML is in the chronic phase. At this time CML develops very slowly and is often stable for a long time. It’s sometimes called the ‘stable phase’. There may be no symptoms and most people lead a normal life.

It’s rare to need to go into hospital. You can have treatment as an outpatient. This doesn’t usually cause many side effects. You’ll have regular blood tests to check how well you are responding to treatment.

Most people who start treatment in the chronic phase have their leukaemia well- controlled without any symptoms. And, if they keep taking their treatment, the leukaemia can be kept under control for years, perhaps even decades.

In some people CML doesn’t respond as well to treatment. And, in a few people, the leukaemia may progress from the chronic phase to a more advanced phase of the disease within about five years of diagnosis.

The accelerated phase

In a small number of people, the leukaemia may gradually move into an accelerated phase. In this phase there are more immature cells (known as blasts) in the blood and bone marrow and the leukaemia develops more quickly. Sometimes this change may be picked up from your blood tests, in which blasts can be seen. Or, it may come to light because you develop new symptoms. If you feel less well or develop new symptoms, let your doctor know straight away.

The treatment for the accelerated phase is often more intensive than in the chronic phase and you may need to spend some time in hospital as an inpatient.

The blast phase

After some time, usually months, in the accelerated phase, the leukaemia ‘transforms’ into a blast phase, which is more like an acute leukaemia. In this phase there are many immature cells (blasts) filling much of the bone marrow. There are also many more blasts found in the blood than normal.

In some people, who have CML that doesn’t respond to treatment, the leukaemia changes quickly from the chronic to the blast phase without going through the accelerated phase.

Myelofibrosis

Rarely, CML causes scar tissue to form (fibrosis) inside the bone marrow. This condition is called myelofibrosis. Areas of the bone marrow that are affected by scarring don’t work properly and can’t make new blood cells. Because of this, people with myelofibrosis may need regular transfusions of blood and platelets.

Remission

Remission is when the blood and bone marrow go back to normal following treatment. There are different levels of remission.

Relapse

Relapse means that leukaemia cells have reappeared after a period of remission.