What happens when you are diagnosed with Acute Leukaemia? (AML)

If you have just been given the life changing diagnosis of an acute Leukaemia more often then not it comes completely out of the blue because of the nature of it.  I’ve put this together from the patient’s and family’s perspective because we have been through it and because when it happened to us this type of post would have been extremely helpful.  What happens when you are diagnosed with acute Myeloid Leukaemia or indeed any acute leukaemia?  What does it mean? What happens next?

Acute Leukaemia’s are extremely aggressive, fast growing and the symptoms you will have been experiencing running up to this point probably won’t have given you any clue that you had Leukaemia.  They are not what you would usually associate with a cancer because Leukaemia, a blood cancer, is not like most other cancers.  So you are probably in shock as we were with many questions running around in your mind.

“Only 1 in 10 people are confident they know the common symptoms of blood cancer” Gemma Peters – CEO of Bloodwise

what does an acute myeloid leukaemia actually mean what happens next

One of the best ways that I’ve heard it described is that it’s like a liquid tumour (there is no solid tumour) and it originates in the bone marrow where usually healthy cells are produced but with Leukaemia these cells have turned cancerous, the bone marrow is failing to do what it should normally do.  The malfunction of the bone marrow causes the symptoms you will have had; shortness of breath (because of lack of red blood cells carrying oxygen around the body), bruising  and bleeding (lack of platelets and clotting factors), infections (lack of healthy white blood cells to fight off what usually the body can deal with).   With cancer we usually expect to find some sort of lump (tumour) or suffer the other usual symptoms that we have been made very well aware of thanks to the successful media campaigns.

There were 40,000 new blood cancer diagnosis’ in the last 12 months and there are a quarter of a million people living with the disease in the UK.  But despite this awareness of it in the UK remains very low.  Blood cancer patients usually visit their GP 3 times or more before being referred so it is the worst out of all cancer for this yet early diagnosis is crucial in many cases” Gemma Peters – CEO Bloodwise.org.uk

From my own personal experience I know very well how this can send you into a spin that leaves you feeling overwhelmed, lost and not knowing what to think.  But the first thing I want you to know it that you are not alone… (further on I will share some useful resources in information for you)

How I felt when I first heard that I had Acute Myeloid Leukaemia

“When I first heard the words ‘you have Leukaemia’ my initial reaction was confusion because I didn’t know what it was, I didn’t know it was a cancer and I didn’t know any of its symptoms so just could not relate to it.  I didn’t break down and cry as you’d imagine because my mind was occupied, trying to recall any information I may have heard or read about Leukaemia but, there was nothing.  As my mother has had two breast cancer diagnosis’s I was always expecting that to happen at some point in my life.”

Any cancer diagnosis is distressing and changes your life but one that you haven’t even heard of is even harder. I was completely in the dark, not knowing the most basic information about Leukaemia, not even that there was more than one type.  I suppose what I am trying to say is that if I had heard of the cancer I was diagnosed with I would at least have had some understanding of it.

The first few days and weeks after diagnosis

As I was the patient and at this point was gravely ill I was only focused on how I felt in that moment and getting through each day but I know that my husband, friends and family were desperate for more information.  We are all different in how we handle things, there is no right or wrong but if you want to know more about AML and its treatment at this point here is the link to my blog about it but if you don’t then that is ok too >> Acute Myeloid Leukaemia – what is it?

(I will also share more help & resources at the end of this post)

AML treatment has to start immediately so unlike other cancers there is no time to take it in, no time to tell your family when you are ready, no time to make preparations for your long absence from work and your life.  Though in the beginning this may seem too much to cope with and you may also feel isolated there are others like you, who have been where you are now, I am one of them and I am here to share my experience to help.

There will be lots of tests, scans, x-rays and forms for you to fill in because your consultant will need to get a full picture of your current health and the Leukaemia in order to help make treatment decisions.  Also because the chemotherapy can be damaging on the body they need an overall ‘picture’ of your body so they can monitor any changes post treatment.

If you are a woman of child bearing age your consultant will talk to you about how the Leukaemia and chemotherapy can affect your fertility as unfortunately there are serious implications with AML.  They will discuss the options available to you and help you make the right decision for you.

In the first few days and weeks there is a lot to take in, some big changes you will need to come to terms with but, your medical team will be very aware of how daunting this all is and will be happy to answer any concerns as well as give information about the diagnosis at any point, whenever a thought or question occurs to you.  Don’t be afraid to ask them something even if it seems silly or to ask them to repeat any information if you want to hear it again.  They are advised that patients and their families won’t be able to take everything in immediately and will not be at all surprised.  We did ask my consultants, CNS and nursing staff all sorts of questions and they were always happy to give me answers.  Misunderstandings and wrong information can be the source of further distress, I know this from personal experience so I would recommend that you don’t hold back and after each conversation make notes to refer back to.

“In time you will adjust and settle into this strange new treatment life, you will get through what seems the impossible, this is I can say with my hand on my heart because I have been there.”

What the first cycle of chemotherapy is like

Because during my first cycle of chemotherapy the AML had already made me really poorly it was really tough for me with lots of complications, this is not uncommon.  However, some patients who are diagnosed earlier than I was, before the AML has progressed too far, treatment is easier for their body to cope with.

Staying in hospital for the duration of each chemotherapy cycle (there is usually 4) is both normal and crucial.  Some of this time will be spent on the ward and some in a side room when you are more vulnerable.

The chemotherapy is designed to wipe out the AML cells in your bone marrow but as with all chemo is also affects other cells.  It can affect your red blood cell and platelets so you will need blood and platelet transfusions throughout treatment.   Once the cycle of chemo is finished (which is over five to seven days twice a day) your bone marrow will start to regenerate, forming normal, healthy cells.  This does take time, sometimes over two weeks and while this is happening you will be classed as Neutropenic (meaning you have no immunity at all) therefore you are closely monitored for signs of infection or sepsis.  If you temperature ‘spikes’ (your temperature is checked every 4 hours) you will be immediately given IV antibiotics, bloods will be taken and urgently tested so they can made sure you are having the right ones.

As I often had temperatures, hospitals are always very warm and the mattresses and pillows have plastic coverings I would very often suffer with sweats so nurses allowed my family to bring a fan in (needed to be PAT~~~ tested by the hospital which they were very happy to do) and I would have a towel over my pillow.

You will probably have more x-rays and scans during each cycle which is very reassuring because your team are keeping a very close eye on what is happening to your body.  It is also very important for you to tell them how you are feeling, any symptoms you are experiencing no matter how small because at this point they will need to act very quickly to treat whatever may be causing them.  In my case I suffered with neutropenic colitis caused by the chemotherapy as well as jaundice.  Many AML patients are vulnerable to fungal lung infections so frequent chest x-rays and anti fungal medication are common.

You may also find that your body bruises very very easily and any cuts and abrasions don’t heal very well.  For me I had many bruises from where I’d had injections and once a cut on my face took a long time to heal, this is because of your low platelets and weakened body.  It’s normal for patients and nothing to be too alarmed about.

Once your Neutrophils (a white blood cell) have recovered enough you will be allowed home for few days before starting your next cycle of chemotherapy.  Before you are discharged another bone marrow biopsy will be done to see how well the Leukaemia has responded to the chemotherapy.

Usually by this point your hair will start to fall out, it also falls out from other areas of your body (this is usually a source of humour for patients!).  My parents went out and brought me a couple of hats and my sister in law a couple of scarfs and bands to wear as it thinned.  This helped me cope, knowing that we were prepared for the day when it would all be gone.  My scalp did become sore and then itchy at first, when it was itchy baby power helped!  I found some really nice hats on this website

You may feel quite anxious at times and this is something that is quite common so if you are feeling like this speak to your CNS or a nurse and they will help you through it and give you medication if needed.

Unfortunately nausea and sickness are one of the side effects of the chemotherapy however there are many medications to control this.  I took a few different ones until mine was under control.  Click here for the list of  leaflets including nausea and sickness  Patient help and information list

Help and information;

Bloodwise community patient and carer forum

Main Bloodwise website

Patient publication and help information

Anthony Nolan website for help and information about transplants

what does an acute myeloid leukaemia actually mean what happens next

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