A diagnosis of leukaemia is always a great shock to patients and their families. Your mother's doctors are there to answer her questions about her illness and to give her information about possible treatments and their chances of success. Once a person knows all the facts, the decision to have treatment or not is ultimately theirs.
Although your mother has decided not to have chemotherapy it is important not to feel that there is nothing else that can be done for her. Chemotherapy is just one part of the care for somebody with AML. She will continue to be closely monitored by her doctors so that any symptoms she has can be relieved. Common symptoms of advanced leukaemia include tiredness, breathlessness, feeling sick and loss of appetite.
Her doctors may also wish to ask for the help of the palliative care doctors and nurses who specialise in symptom control. They can liaise with her GP, district and Macmillan nurses and the local hospice if necessary.
The natural course for somebody with untreated AML is very variable. The bone marrow will remain abnormal and unable to make normal red cells, white cells and platelets. If your mother has a low red cell count (anaemia), she may be tired and breathless. A low platelet count will mean she may have problems with bleeding and bruising. Because of this she will need transfusions of red cells and platelets. She will also be at risk of getting infections. The blood may start to become thicker from the increasing leukaemic white cells. This can affect the blood supply to the brain and cause tiredness, confusion, weakness, and headache. it can also affect the blood supply to the lung, causing breathlessness. Importantly, pain is very uncommon in this situation.
Sadly, a person with untreated AML will usually only live for a short time. However, some people may live for 3 to 6 months from their diagnosis. In time most people develop a serious infection or a bleed that proves fatal. This can happen suddenly or more commonly as part of a general decline as their white count rises. It is important to discuss these possibilities with your mother and her doctors so that everybody knows her wishes regarding the last stages of her life, for example whether she would want to be given antibiotics or admitted to hospital if she developed a serious infection.
With the support which is widely available, most people with terminal leukaemia can be cared for in the surroundings of their choice in comfort and dignity.