Updated 14 Mar 2019

If you’ve been diagnosed with CML, you may have noticed some symptoms before your diagnosis. It’s important to remember that not everyone will get all, or even any, of the symptoms listed here – each person is different.

Symptoms in the chronic phase

Many of the symptoms in the chronic phase are very common and are often caused by other things. They usually develop very slowly and include:

  • tiredness or fatigue (extreme tiredness)
  • loss of appetite
  • unexplained weight loss
  • increased sweating, particularly at night
  • bloating, swelling, general discomfort and sometimes pain around the stomach area (caused by an enlarged spleen)
  • blurred vision
  • unusual or excessive bleeding, for example from your gums or nose
  • in men, long-lasting, painful erections (priapism).

Symptoms in the accelerated phase

Your symptoms won’t normally change much from the chronic phase to the accelerated phase, but you may notice an increase in bone pain. Your healthcare team will run tests to look for changes in your blood, bone marrow and blast count to check for signs of development to this phase.

This stage sometimes suggests CML is changing to the blast phase, so your healthcare team will monitor you closely to check for any signs of this.

Symptoms in the blast phase

In addition to the fatigue, tiredness and unexpected weight loss mentioned above, people in the blast phase often notice extra symptoms, including:

  • fever
  • bone pain
  • bruising more easily than normal
  • painful or unusual bleeding, for example from your gums or nose
  • repeated infections
  • swollen lymph nodes
  • headaches (if blast cells are in the fluid around the brain and spinal cord).

Watch Professor Jane Apperley, Consultant Haematologist at Hammersmith Hospital, talk about the symptoms of CML.

Tests to diagnose CML

You’ll have a set of tests to confirm whether you have CML. If you’re diagnosed with CML, you’ll have some more tests to help your healthcare team decide which is the best treatment for you.

At any time, you can ask your healthcare team to tell you why you’re having a certain test, what the results mean and – if you would like – for a copy of the test results.

The tests to diagnose CML include:

In 95% of people with CML, the Philadelphia chromosome can be detected with a cytogenetic test. This would confirm a diagnosis of CML. If you’re one of the 5% of people for whom this test can’t pick up the Philadelphia chromosome, there are other tests that can look for the BCR-ABL1 fusion gene. These are called a polymerase chain reaction (PCR) test and a fluorescence in situ hybridization (FISH) test. Both tests are done using a blood sample.

Watch Professor Jane Apperley, Consultant Haematologist at Hammersmith Hospital, talk about the tests used to diagnose CML.

Staging CML

For most cancers, doctors will run tests to ‘stage’ the disease and help them plan treatment. When doctors ‘stage’ CML, they are trying to find out what phase the disease is in – chronic, accelerated or blast.

It’s important to know that most people with CML stay in the chronic phase – which is the easiest phase to treat. If the disease does develop, it doesn’t always do it phase by phase. Rarely, people might move from chronic phase straight to the blast phase. Likewise, treatment at the accelerated phase or blast phase can move you back to the chronic phase.

The full blood count, bone marrow sample and cytogenetic tests all help doctors to stage CML.

Risk scores

As part of staging, your doctors will work out your ‘risk score’. This is to help them plan the best treatment for you. Risk scores are less important today than before the introduction of tyrosine kinase inhibitors (TKIs), because most people with CML respond to these drugs regardless of their risk score.

There are four risk scores for CML that you might hear mentioned: Sokal, Hasford, ELTS and EUTOS. Sokal is most commonly used. The Sokal risk score looks at:

  • your age
  • the size of your spleen
  • the number of blast cells in your blood
  • your platelet count.

Watch Professor Jane Apperley, Consultant Haematologist at Hammersmith Hospital, talk about staging CML.

If you're diagnosed with CML

Your healthcare team

Your hospital will give you the names and contact details of your healthcare team. Get in touch with them if you have any questions you want to ask when you’re not at the hospital.

Remember to tell other healthcare professionals you see – like your dentist or optician – about your diagnosis and any medication you’re taking. They may need to check with your specialist or GP before giving you some types of treatment.

Talking about your diagnosis

Many people find it helpful to talk to someone who’s had the same diagnosis and treatment, or contact a support organisation. You may want to join our online community, or contact our support line.

Staying informed

Take some time to think about how much information you want, when you want it, and how you want it to be given to you. Read our information on finding out more about your condition.

Telling others

It’s entirely up to you who you tell about your illness, but people often find it helpful to keep their loved ones informed. It may also be a good idea to tell someone at work about your diagnosis. See our tips on telling others about blood cancer.

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