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On first discovery
Around 40% of CML patients in chronic phase may not have any recognisable symptoms (are asymptomatic) and can be diagnosed following for example a routine blood test as part of an application for life insurance or more often after a routine eye test.
Many patients might experience diverse symptoms (for example: fatigue or tiredness) of varying intensity which they or their GP might see as symptoms of more common, minor complaints.
These experiences are applicable even in the later stages of the initial chronic phase (CP) within which some 90% of patients are diagnosed.
It is unsurprising therefore that the reaction of most people at diagnosis is one of enormous shock, accompanied by extreme fear, due to the general belief that Leukaemia means they will inevitably die.
Most people living with CML describe their diagnosis as a life-changing event.
It may take a while for the reality of your diagnosis to sink in and you should not rush into making any decisions about your treatment options or how you are going to deal with your diagnosis. Talking to your Haematology Consultant will help you to decide on the best possible treatment for you. It is always a good idea to take a friend or close family member with you to your clinic appointments, so that you have an 'extra pair of ears' and someone you can discuss your treatment options with.
CML diagnosed in chronic phase (CP) is often asymptomatic. The disease is often diagnosed during routine testing for e.g life insurance purposes or for other routine screening. For instance, opticians sometimes spot abnormalities during routine eye examinations.
Others are diagnosed after noticing symptoms caused by high white cell counts. They may routinely feel unusually fatigued or take longer than normal to recover from a minor ailment like a cold or cough.
But many report that they only discovered they had CML after having a routine examination for a condition they thought was entirely unrelated.
Most GPs will never diagnose a single case of CML within the entire span of their professional practice. But those who do and who are aware that a patient is presenting with rather generalised symptoms of unusual fatigue, unexplained bruising, paleness or pallor, bone pain or other less-defined symptoms, should err on the side of caution and arrange for a blood test in order to rule out possible serious disease.
Once you have a confirmed diagnosis, in most cases of chronic phase CML and even a significant proportion of patient diagnosed in accelerated phase, TKI therapy will be prescribed.
You may have feelings of anger, resentment and denial. Remember that none of these feeling are right or wrong and it is okay to feel the way you do. You should not feel guilty or think that you are just feeling sorry for yourself.
What about my quality of life?
The majority of people diagnosed in chronic phase( CP) Ph+CML are treated with TKI therapy and go on to live with a good quality of life, continue to work, enjoy family life and go on holiday. A proportion of people diagnosed in late chronic or accelerated phase may respond well to TKi therapies. A proportion may need more intensive therapy to get them back to a second chronic phase. 2nd and 3rd Generation TKI therapies can prove to be very effective in more advanced stages of this disease. In blast phase, more intensive chemotherapy and/or stem cell transplantation in eligible patients will be needed. Blast phase behaves more like an acute leukaemia and is more challenging to treat successfully.