For those diagnosed with Acute Myeloid Leukaemia, it can feel as though your body has betrayed you. Your bones ache, your stomach hurts and you’re unable to eat. Your pale skin makes the increasing bruises stand out. This rare blood disease strikes fast and can progress just as quickly if not dealt with immediately. But despite how things may appear when you are first diagnosed, there are ways to slow down the progression of this rare condition. The best way to deal with your diagnosis is to first understand what it is so that you can make decisions about your treatment that are right for you.
Acute Myeloid Leukaemia is a form of cancer that stems from a mutation of cells that reside in the bone marrow. Bone marrow creates young white blood cells, called myeloid cells, which grow into red and white blood cells or platelets. When these myeloid precursor cells have done their jobs, they are replaced by new cells. When you have AML, these myeloid cells replicate much faster than they should, taking up space in your body, and keeping healthy cells from bringing oxygen, fighting off infections, or healing injuries. These malignant cells can spread to other parts of the body, most commonly to the nervous system, liver, spleen or testicles, which can severely affect their ability to function.
There are several subtypes of AML, identified by a few factors, such as the number of healthy blood cells present, the size and number of these cells, and changes in DNA. Identifying a subtype can change your treatment plan and even your overall prognosis. For example, while nearly all AML subtypes are caused by DNA mutations, some mutations are more likely to lead to remission than others. Unlike other cancers, the progression of AML is not measured in stages.
AML is a fast-growing cancer, which means you will likely begin to feel some, or all, of these symptoms relatively quickly after the disease takes hold. The symptoms of AML are similar to other forms of leukaemia and may include:
There are several ways to test for AML, most commonly:
While AML is the most commonly diagnosed form of leukaemia, it is still an extremely rare blood disease, accounting for just 1% of all cancers. Because of its rarity, it is difficult to pinpoint an exact number of current cases worldwide. That said, the World Health Organization estimated that in 2012 there were about 351,965 cases globally.
Currently, it is impossible to detect AML before symptoms appear. However, there are common factors that can identify those who may be more likely to develop this disease, including:
Treatment for AML will depend on your AML subtype, your age and health, family history, and any present infections or additional genetic mutations.
Because this is a fast-moving disease, treatments need to be immediate and aggressive once the best path has been identified. Regardless of the treatment specifics, plans generally follow a two-step process:
There are four common types of treatment:
A rare blood disease diagnosis can be an earth-shattering experience, and there is no doubt this will be a trying time for those with this disease. Because there is no way to see if you have AML until it is already present, coupled with its fast-acting nature, those with AML will likely feel as though their world has pulled out from under them.
As a loved one, it is important to offer strength and assistance wherever possible. Offer rides to chemotherapy treatments, encourage your loved one to eat when they do not have the appetite to do so. Maybe even put time into researching AML or looking for potential clinical trials.
In the time after diagnosis, those with AML will likely be thrust into an overwhelming sea of doctors, adding to the physical and emotional stress of not knowing what the future will hold. In those moments, when they are at the very tipping point, you can be the anchor that rights the ship. You can help them weather the storm at its worst and allow them to continue to sail on. As a loved one, you cannot make the fight for survival easier, but you can help make it less lonely.
The list below includes example questions to help start a conversation with your health care provider. There may be other relevant questions based on your symptoms, stage, and medical history that are not listed here.
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This website is developed exclusively by Janssen Pharmaceutica NV. Please note that the patient advocacy groups, and external sources listed below are an additional and independent source of information you might find useful. These groups and sources were not involved in the creation of this website and do not endorse its content in any way.
The Leukaemia and Lymphoma Society is the largest non-profit organisation committed to ridding the world of leukaemia and lymphoma through research, education and support, and advocacy.
On May 28th each year, organisations from around the world organise events, educational seminars, and donations to support those with rare blood cancers such as AML. There is also an AML World Awareness Day on April 21st.