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On first discovery
Around 40% of CML patients display no symptoms and are diagnosed following a routine blood test that may have been taken as part of an application for life insurance. Or often, they’re sent for further investigations after a routine eye test.
Many more patients experience diverse symptoms (for example: fatigue or tiredness) of varying intensity which they and/or their doctor see as manifestations of more common, minor complaints.
These experiences are applicable even in the later stages of the initial chronic phase (CP) of the disease during 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 because of the general belief that Leukaemia amounts to the onset of death.
Most people living with CML describe their diagnosis as a life-changing event and that is completely understandable. In our experience, when someone is first told that they have leukaemia, they often feel numb and in shock.
It may take a while for the reality of what’s happening to sink in and you should not rush into making any decisions about your treatment or how you are going to deal with your diagnosis. Talking to your Haematology Consultant or nurse will help you to decide on the best treatment for you. If you can, take a friend or family member with you to your clinic appointments, so that you have someone you can discuss your options with.
CML in chronic phase is often asymptomatic. The disease is often only diagnosed during routine testing for 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 very high white cell counts. They may routinely feel fatigued or take longer than normal to recover from a minor ailment like a cold or cough.
But many of our members report that they only discovered they had CML after having a routine examination for a condition they thought entirely unrelated to CML.
When the disease progresses to the later phases of accelerated or blast phases, symptoms are generally more obvious and specific.
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 serious disease.
Once you have a confirmed diagnosis, in most cases of chronic phase disease, TKI therapy will be prescribed.
You may have feelings of anger, resentment and denial. Remember that whatever you’re feeling is not right or wrong, and it is okay to feel the way you do. You may be extremely upset by your illness and this is completely understandable. You should not feel guilty or think that you are just feeling sorry for yourself.
What about my quality of life?
Many people who are in the chronic phase of CML have very few symptoms and they can live a normal life, go to work, enjoy family life and go on holiday. In the more advanced phase of CML, it is likely that more intensive therapy will be needed.