What To Expect After Being Diagnosed With AML

Receiving a diagnosis of Acute Myeloid Leukaemia (AML) can be a life-altering and overwhelming experience for both patients and their loved ones. We aim to provide you with valuable insights and information about the journey after an AML diagnosis. Understanding what to expect during this challenging time can help alleviate anxiety and empower you to make informed decisions. Our goal is to help you navigate this journey with knowledge and confidence, offering guidance and support every step of the way.


What To Know After Diagnosis

After an AML diagnosis, patients may want to know what are the stages of acute myeloid leukaemia and at what stage does their diagnosis fit in.

As acute myeloid leukaemia is a liquid cancer, it is not classified in stages like the way solid cancers are usually. AML is classified by risk categories (poor risk, standard risk and favourable risk). This is determined by the genetics of the AML at the time of diagnosis by looking at tests such as the cytogenetics and AML specific molecular panel. The poor risk category typically has less favourable outcomes while the favourable risk category has a better prognosis.

After the diagnosis, patients may also wonder what they can expect with acute myeloid leukaemia. In most cases, the diagnosis of AML often comes as a shock to the patient. AML is a serious medical condition that requires months of treatment ahead. It is important that patients are physically and mentally prepared for this battle ahead.

The symptoms of acute myeloid leukaemia often develop over a period of weeks to months as the leukaemia cells gradually increase and affect the function of the normal healthy cells in the bone marrow.


What are the First AML Symptoms?

women with headache

The first symptoms of acute myeloid leukaemia are usually related to a decrease in the function of normal blood cells in the bone marrow.

Patients typically present with symptoms related to low red blood cells (anaemia) – such as breathlessness, tiredness, frequent infections (due to lowered or non-functional white cells), and bruising easily (due to low platelet counts). There are also less specific symptoms such as night sweats, unintended weight loss, or swelling of glands in the neck and groin.

However, not all patients may experience these symptoms as AML can be asymptomatic at an early stage of detection. However, the condition progresses over a typical period of several weeks – months. Once the AML becomes more advanced, almost all patients experience symptoms varying from lethargy, shortness of breath, increased infections to easy bleeding or bruising.

If patients are asymptomatic, they may wonder how long before symptoms of acute myeloid leukaemia start to show. Symptoms of acute myeloid leukaemia typically appear 4 to 6 weeks prior to diagnosis. As AML is known to be an aggressive form of cancer, the onset and progression of symptoms happen quickly. However, symptoms such as tiredness or infection may be mistaken for those caused by more common diseases, such as the flu.


Treatment Expectations

Once diagnosed, patients will be given a treatment plan that is dependent on the patient’s age, health condition and subtype of cancer. These treatments may include chemotherapy, targeted therapy and stem cell transplant.

Length of Treatment

As AML is an aggressive form of cancer and requires immediate treatment, patients may also be concerned about how long the treatment for AML is.

Intensive chemotherapy remains the treatment of choice for younger and fitter AML patients. Some of these patients may also need an allogeneic haematopoietic stem cell transplantation. As such, the treatment for AML may last for up to 6 months.

In older patients or patients who are not fit for intensive chemotherapy or transplantation, treatment is often less intensive. However, in these cases, while the treatment is usually better tolerated, the duration of treatment is often continuous, with the aim to control the patient’s disease.

Treatment Success

Some patients may wonder if AML is hard to treat. In reality, there have been significant advances in the treatment of AML over the last decade.

Many younger and fit patients may still require intensive chemotherapy to initially treat the AML. However, there are newer forms of more targeted therapies for AML which allows us to treat some types of AML without the need of conventional chemotherapy.

In fact, some forms of AML treatment are now possible as outpatients as well. As a result more AML patients can benefit from disease specific treatments, with higher success rates while experiencing less toxicity.

Unfortunately for some patients with more aggressive AML, they may still need a hematopoietic stem cell transplantation to achieve a longer term remission. Even in these instances though, there have been remarkable advances in the use of drugs, supportive care, and better means of identifying donors.

The overall outlook for AML patients remains positive for the future.


Lifestyle Changes 

running shoes

As the condition progresses and patients undergo treatment, AML patients should make lifestyle changes to manage their symptoms. AML and the treatment related to AML will cause your immunity to weaken. As such, you will need to focus on your general well-being and diet.

Patients should make sure they are well-rested but also maintain an active lifestyle as far as possible. Walks or simple exercise are encouraged. It is important that their family (or even close friends) are involved in supporting them, as the battle against AML is often stressful and tiring.

A well-balanced diet can aid patients in coping with AML and its treatment. Patients may find that they are losing weight due to a loss of appetite as a side effect of some treatment options. Patients are recommended to consume healthy fats such as avocado and nut butter to keep their energy levels up.

Patients are also not recommended to drink alcohol as it can worsen the fatigue experienced from AML and AML medications. Additionally, alcohol can limit the bone marrow’s ability to produce blood cells and worsen the gastrointestinal effects of chemotherapy.


Get Support for Your AML Treatment with CFCH

Being diagnosed with Acute Myeloid Leukaemia (AML) can be an overwhelming experience, filled with uncertainties. Get in touch with the CFCH team where we provide you with personalised support, answer your questions, and guide you through your treatment journey.

The information on the Centre For Clinical Haematology website is intended for educational use.  It should not be considered or used as a substitute for medical advice, diagnosis or treatment from a qualified health professional.

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Posted by CFCH

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