This post is aimed helping you understand the basics about Acute Myeloid Leukaemia (AML) and how it is treated.  As with other cancers it is a very complicated disease with researches and the medical profession learning new things about it all of the time.  With some confusing terms and words associated with it I have managed to gain some understanding of it.

Firstly a little on why I’ve put this together; After I was very suddenly diagnosed with AML in April 2015 (currently in remission).  When I wanted to find out more about it, of course there is a lot of information out there, but it either didn’t go into enough detail or was far too scientific. I have spent hours researching, questioning my awesome consultant, other consultants, my specialist Haematology Macmillan nurse, colleagues at Blood cancer charity Bloodwise and other AML patients.  This post is everything I have learnt all in one place, hopefully in an easy to understand way.  However I am more than happy to answer any questions you may have after reading this as I have extensive notes and resources now!

Also I often get asked about AML by people who are interested, newly diagnosed patients and family members of patients so felt it would be a good idea to put what I’ve learnt into this post in an easy to understand language.

There is a lot of information in this post so, depending on why you are reading this and from personal experience I know it can be overwhelming.  My need for information has changed over time so please don’t feel you should take all of this in, some of it may be helpful though.

TIP ~ Make notes during your treatment.   There is so much to take in and a lot going on around you during treatment so I would strongly advise making notes.  My husband and family did this for me a lot of the time.  This will really help you once you finish treatment and start to adjust to life afterwards. I found myself struggling to remember or having a sketchy memory when looking back which would leave me feeling lost.  Going through the notes and talking to my family really helped me to understand and process it all.  Bloodwise have a great diary you can order or download for free Bloodwise Publications

Here’s a useful clip to help understand who gets AML ~ Professor Paresh Vyes, Consultant Haematologist, John Radcliffe Hospital, Oxford

Acute Myeloid Leukaemia ~ Main Points

• AML is most common in children, young adults and the elderly (uncommon before the age of 45).  Overall it is most common over the age of 65 and more men than women are diagnosed with it.  5% of new cases are 35-44 year olds. 33% of cases are diagnosed through the emergency admissions route, 40% of those treated survive past 5 years.  In general about 80% of adults will achieve remission after treatment, but in about half of those cases the cancer will return so overall cure rate is around 40%

• It starts in the early stages of the development of the affected blood cell and if left untreated can be rapidly fatal.

• Its the Myeloid cell which is affected and its fast growing hence its name ‘Acute Myeloid’.  The Myeloid cell in the bone marrow is responsible for forming red blood cells, platelets and some white blood cells.

AML is caused by damage to the stem cell in the early stages of its development

• AML originates in the bone marrow (blood forming tissue of the body).  It’s basically the uncontrolled, very rapid, growth of faulty blood cells, usually white.  It is triggered when the normal process of the cell is disrupted causing it to malfunction and so the regulation of cell death, differentiation and division is no longer controlled in the normal way. These ‘leukemic’ cells are able to develop because the mutations/DNA faults trigger the deactivation of tumour suppressing genes, activating oncogenes.  Therefore the cell becomes cancerous.

• Though results of blood counts will indicate AML it is only confirmed once a bone marrow biopsy has been performed (read my experience here Meeting my Vampire the Bone Marrow Demon!.

This is done within the first 24 hours of a patient’s admission.  Its critical that the medical team know the type of AML in order to tailor the Treatment accordingly.  During treatment the medical team will do several bone marrow biopsies in order to monitor the disease and how the patient is responding to the chemotherapy.  Also post treatment, usually every 3 months a patient may have biopsies to monitor their remissions status.

• This mutation leads to many, immature, faulty cells rapidly crowding out healthy cells in the bone marrow.  Many patients experience bone pain (I had neck pain leading up to my diagnosis) which is caused by the massive amount of cells present causing pressure build up.  Called ‘Blast cells’ they can spill into the blood stream; sometimes spreading to other organs like the liver, spleen or brain.  To be classed as AML the level of Blasts usually needs to be 20% (I had 35% Blasts in my blood stream at diagnosis).

• The Cytogenetics of AML – you may hear the terms ~ genetics, cytogenetics and DNA mentioned so when referring to AML, but what does it mean? This is the analysis, via a bone marrow biopsy, of a patients cells to establish the particular type of AML they have.  Cytogenetic analysis is the study of chromosomes and their abnormalities  In AML they look at which cells mutated in the Myeloid stem cell.  The results of this analysis helps determine prognosis and a patients likelihood of relapse (the cancer returning)

• AML is classified using to two systems – WHO (World Health Organisation) and FAB (French American British).  Each case is classified by using the type of cell from which the Leukaemia developed and its cytogenetics, genetic abnormalities.  These systems are used by medical professionals, researchers, clinical trial professionals, charities and authorities who monitor its incidents and survival rates.  It also allows data to be universally understood and shared worldwide.  Don’t worry if you aren’t aware of any this or don’t hear this mentioned at first as its not something discussed with patients as a matter of course.  I didn’t discuss any of this with my team until after my treatment had ended as during it I just focused on getting through the chemotherapy.  Also some people prefer not to enquire further and are happy with the knowledge that they are in remission, that’s all they need to know, it is a very personal choice.

• Prognosis depends on age of patient, the type of cell mutation, general health of patient, how it has affected the body at the time of diagnosis and their response to the chemotherapy.  Another factor is how quickly the Leukaemia in a patient responds to the treatment, better responses have been linked to better long term outcomes.

• Early diagnosis is preferable – it means there are more treatment options available.  Also the effects of the disease will not have had time to cause damage to the body.

• A study by the Welcome Trust Sanger Institute discovered that there are 11 subtypes of AML, I won’t go into this here but for more in this if you are interested ~ Click here for full article

Treatment for Acute Myeloid Leukaemia – Main Points

• Because of its very aggressive nature AML requires immediate treatment (often referred to as ‘rapidly fatal’ and ‘the most severe form of blood cancer’) with patients starting treatment soon after they are diagnosed, usually within 24 hours.  For the duration of treatment the patient will stay in hospital, sometimes in isolation, for around 4-5 weeks at a time. Patients need to be monitored very closely due to the effects of the Leukaemia and chemotherapy with obs being done every 4 hours and daily bloods.  Vulnerable to life threatening infections and complications remaining in hospital is crucial.  They may be given some time at home, usually a week, in-between chemotherapy cycles.

• Due to the extremely compromised immune system caused by AML most patients will need to be started on IV antibiotics almost immediately.  To combat any infections and possibly neutropenic sepsis that will have inevitably started to affect their body.

• On admission the patient may undergo x-rays, CT scans, MRI, echo cardiogram, ultrasounds, bone scans and lumber puncture to find out if the AML has had any other effects on the body.  Also so that during and after treatment your team of consultants can compare how your body has coped with the intense treatment (for example effect on the heart).  These may also happen during treatment as situations crop up deeming them necessary.  For example I needed CT scans due to acute stomach pains which turned out to be chemo induced colitis.  Another time I needed kidney scans as I was jaundiced.  Blood chemistry tests are also done to determine the degree of liver and kidney damage before and after treatment.

• During treatment one of the main concerns is for the condition of a patient’s lungs as they can develop a dangerous fungal infection.  To monitor and prevent this the patient will have chest x-rays and anti-fungal medication.

• Current treatment consists of high dose of chemotherapy and in some cases a bone marrow/stem cell transplant.  Usually there are two cycles of induction chemotherapy aimed at getting the patient into remission (sometimes more cycles are needed). Followed by two cycles of consolidation chemotherapy to ensure that all Leukemic cells have been eradicated.  Each cycle lasts for 5-7 consecutive days of IV chemotherapy which is given over a few hours.  Chemotherapy is designed to interfere with and halt the growth of cancer cells.  Click here for more on AML treatment

• Remission ~ if your bone marrow has less than 5% blast cells, blood counts are within normal range you are classed as in remission.  However remission isn’t the same as cured (I am working on a more in depth post about remission explaining this further), cancer cells are still present but at a low level.  Until a patient has been in remission for at least 5 years the chance of relapse remains significant with AML.

• PICC line – Peripherally Inserted Central Catheter.  This is how the chemotherapy is administered to the patient.  Also blood transfusions, antibiotics and fluids can be given through it as well as blood taken from it for testing.  Read my earlier post for my experience.

• A bone marrow transplant/stem cell transplant is carried out in cases where, due to the type of AML, it is deemed the only way of a patient remaining in remission long term.  These transplants are only carried out when completely necessary as they are very tough on the body.  A donor can be from a sibling or the bone marrow register and needs to be a very close match, sometimes a patient’s own stem cells are used, known as an Autologous transplant.  For more on this click here; Bloodwise information downloads/booklets

• Sometimes patients are unable to have all of the intense treatment as their bodies cannot cope with the effects of it.

• Due to the AML a patients white blood cells (also known as Neutrophils) are either dangerously low or non-existent.  This is one of the reasons why, for much of the treatment, the patient has to stay in hospital, sometimes even in isolation.  With no white blood cells the body has no defence against infection, including from bacteria in food which normally wouldn’t be a problem.  Patients have to be very careful about their diet. For more on Neutropenia click here

• Each patient is assigned a Clinical Nurse Specialist (CNS) and a Multi-disciplinary Team.  My CNS is my Macmillan Nurse who is also highly qualified in the field of Haematology, make sure you are aware of who yours is as they are invaluable for help and support during and after treatment.  The Multi-disciplinary Team is made up of a group of healthcare workers such as consultants, clinical nurse specialist (CNS)

• A patients will usually need numerous blood transfusions and platelets (I had 33 infusions overall).  This is due mainly to extremely low red blood cells and platelets because of the Leukaemia.  During each transfusions a patient’s temperature and blood pressure is closely monitored for any potential adverse reactions.  I reacted badly which meant I had to have specially matched blood going forward… click here for more on what happened to me My Transfusion Drama!

• Clinical Trials – most patients will be invited to part of the latest clinical trial.  Trials are run by the NHS and are designed by senior clinicians who are specialists in AML.  Thanks to clinical trials there’s been a significant improvement in survival rates over the last 40 years.  Their aim is to minimise side effects from treatment, find safer and more effective treatments and increase cure rates.

AML – Other Information

• There is currently no known way to prevent AML though there are some possible triggers; previous chemotherapy or radiotherapy, exposure to the chemical benzene, patients with blood disorders, people with genetic disorders, auto immune disorders.  However charities such as Bloodwise and Cancer Research UK are continuously carrying out research into this disease in the hope of one day finding a kinder treatments and a cure.  These organisations also share their research with other researchers worldwide.

• Survival rates for Leukaemia in general have increased significantly over the past 40 years mainly due to advances in treatments.  One of those being the stem cell transplant which was first successfully done in

Spotting AML in a patient can be a challenge as symptoms are often vague and non specific, mistaken easily for other day to day ailments. Fatigue being one of them which we can all put down to ‘having been busy lately’ or in my case relating the symptoms to a bad case of the flu plus with the pressures on the NHS it’s inevitable that some cases are not diagnosed straight away.  In fact most cases are diagnosed through the emergency admissions route due to the effects it has on the body leading to other life threatening issues before the Leukaemia has been identified.

I’ve spoken to many who have had similar diagnosis experiences and few who’ve been picked up during routine bloods as part of their yearly check ups.  Many patients can feel let down by the delay in their diagnosis which is understandable and mine was only picked up after bloods were requested as an after thought.

I am using my experience to help raise awareness.  Already in the area where I live people are a lot more aware of what to look for and to push their GP if they feel the need to.

Click here for more about AML diagnosis ~ Prof. Paresh Vyas

Further information;

What is AML ~ Prof. Paresh Vyas, Consultant Haematologist, John Radcliffe Hospital, Oxford

What causes AML ~ Prof. Paresh Vyas, Consultant Haematologist, John Radcliffe Hospital, Oxford

(sources; Bloodwise, Cancer Research UK, Cancer.net, Cancer.org, NICE, Leukaemia Care, bloodjournal.org, National Cancer Regist. & Analysis Service)