What is Acute Myloid Leukaemia?

There are 137 different types of blood cancer so it is a very complicated one.  This post is just about the one I was diagnosed with as its the one I know a lot about now!  I am hoping to know more about other types of Leukaemia but as yet I haven't done much research!

I will try to keep this as simple as possible as it's extremely complicated!  I remember my specialist Macmillan nurse saying that Leukaemia is basically a liquid tumour so unlike other cancers it cannot be surgically removed!  I will never forget this statement, a liquid tumour running throughout my whole body...absolutely frightening!  

I have found it hard while researching this as it is the blood cancer I have but it's also something I need to know.  Sometimes it can bring the traumatic memories back and remind me that I am still fighting it every day but overall it's made me feel more in control and confident knowing fully what I am dealing with.  I also love learning and get a real buzz when I gain more understanding and knowledge.

I was diagnosed with Acute Myeloid Leukaemia (AML) which is a rapidly and aggressively growing form of blood cancer.  It's a cancer of the white blood cells or Leukocytes and is basically the disruption of the normal formation of these cells leading to the development of Leukaemia.  Normal Myeloid cells fight bacterial infections, defend the body against parasites and prevent the spread of tissue damage.  In AML myeloid cells are not fully developed, they have been 'disrupted' by a mutated gene in the stem cell. This happens during the cell's early development in the stem cell affecting the control of cell division, differentiation and cell death.  This causes the production of cancerous 'blast' cells very rapidly crowding out other blood cells.  I had horrendous neck pain which was caused by this happening in my bone marrow, other patients may experience bone pain elsewhere.

AML starts in Myeloid stem cell

AML requires immediate treatment as it can be rapidly fatal;

• Malignant cells can quickly spill over into the blood stream spreading to other organs.  
• White blood cells quickly crowd out  and replace normal blood and marrow cells.
• Patients can quickly develop sepsis which can be fatal.
• Patients are extremely vulnerable to life threatening infections or serious internal bleeding.

A blood count will usually indicate Leukaemia but, diagnosis is only made by laboratory tests on a bone marrow biopsy.  The bone marrow biopsy cells are DNA tested to deem the type of blood cancer, this process is called 'Cytogenetics' and the development of this has meant that more patients have a better chance of survival.  Under the umbrella of AML there are lots of subtypes which again I won't go into at this point as its very complicated.   

Once a patient's gene mutation is known it is used as part of their prognosis prediction. The gene mutation in my Leukaemia is +veNPM1 -veFLT3 which gives me a favourable prognosis, I will write a separate post of what this actually means!  Consultants also use this information in order to decide on which treatment regimen will give you the best chance of achieving remission.  However, even after successful treatment there still remains a significant risk that the cancer will return.

Unfortunately at the moment the exact cause is unknown although there are some risk factors.  I did ask my consultant why I got it and he simply said 'I'm sorry but we don't know'.  I think I am ok with this as it's nothing I have done so I can't blame myself...it's just an awful twist of fate.

I will write a separate post about the treatment involved.

The Creation of Anna's Butterflies Logo

While I was otherwise engaged fighting Leukaemia a lot of people were inspired to do something to help in whatever way they could.  Time and time again I was overwhelmed by their generosity, not only with their money but, also their precious time.  Some of them I hardly knew before my illness but, they still felt compelled to 'do something'.  Generally people can be so kind and generous and seeing this really has restored my faith in humanity!

This post is about my friend Gemma who designs and produces custom vinyl decals for wall art, vehicles and signs. We didn't know eachother very well before but, when she heard about the creation of the Anna's Butterflies team for the Louth Run For Life it inspired her to create a logo that could be used for the event.  Gemma wanted to use her skills and give up lots of her time to help the cause!

It all started when her partner took part in a coast to coast bike ride organised by my husband with his work colleagues and the support of DS Smith the company he works for.  When I was suddenly diagnosed with Leukaemia they decided to do it to raise funds for Bloodwise which at the time was the Leukaemia and Lymphoma Society.  I was so touched by this as so many people were putting themselves out and giving up a lot of their time to support us.  Gemma's partner had never cycled before but brought himself a bike as he really wanted to take part but she knew she wouldn't be able to cycle with them but really wanted to do something to help.  Originally the idea was to come up with a design for stickers to sell giving the profits to the charity.  While talking about it to a mutual friend Gemma was told of my obsession with butterflies and so this idea was born also incorporating the words 'Love', 'Hope' and 'Cure'.

This logo is so me!!

Soon after this, with the Run for Life getting closer my husband and a friend suggested a logo to go on the t-shirts of the people taking part under 'Anna's Butterflies'.

Wearing our T-shirts with the logo on

I love it and she has since been asked by other people to do similar things for them and by charities too!  She loves doing it especially when it helps others!  Here a link to her Facebook page...check it out! https://www.facebook.com/vinylgem/

Gemma also designed this wall art for my lounge wall which my husband organised as a surprise ready for me when I came home for one of my 'treatment breaks'.

My 40th - Double Celebration!

Me, my husband and daughter at my 40th!

When I was in the last few months of my 30's I was feeling pretty good about life, until Leukaemia came and rudely barged in!  At some point, while I was in hospital my husband told me that before my diagnosis he was going to organise a surprise party for my 40th, he'd done the same for my 30th. Even though I was really touched at the time I felt so rough that I didn't give it much more thought.

Before I had cancer, as my 40th birthday approached, I often joked about how I'd blinked and suddenly become so old so quickly. Now I feel lucky to have made it to this wonderful age and many others aren't as fortunate so now I will look on growing old is a privilege!

Me at my 40th

Later on he brought the subject up again suggesting that we should go for it and plan a party to celebrate my 40th, hopefully being cancer free and to say thank everyone for the amazing support we'd had! I was feeling quite well at the time and thought why not?  We deserved a damn good knees up after this nightmare!

It gave me something to focus on so I sent most of the invites out from my hospital bed and quickly realised the guest list would soon be nearly 200!  Because of this we booked Louth Town Hall one of the largest venues locally.

My Family

As it drew nearer I did begin to wonder what the hell I'd been thinking as I started to get really anxious about seeing so many people on one night!  Plus the added stress of my appearance, it had been so long since I'd been out socially and I had totally lost my confidence!  What was I supposed to do with my short hair...I only knew how to style really long hair!  In the end I found a headband with sequins and beads on it which matched my dress, I was so relieved as we all know how difficult it is to find something when you are looking for it.

The owner of a local beauty salon where I go very kindly offered to do my make up and nails, it was a real treat as it was the first time since my illness that I'd looked so glam with fab false eye lashes!

My sister and I had matching nails!

A selfie before the party!

I've always loved photos and am usually the one taking lots of pictures so I really wanted a photo booth, my husband came up with the idea of making our own which we did and it was a great success. He made a background out of London wallpaper as we've had some really happy times there!  Because of our photo booth we have some brilliant photos to treasure forever, its great to see everyone enjoying themselves.  When I look at them it makes me smile and cry happy tears as we've started to make some happy memories again!

I was so touched by all the friends who came, some had travelled quite far.  My cousin, who'd told me he couldn't make it, turned up to surprise me, it was wonderful to see him!  Some other friends travelled a couple of hours to and from my party just to be with me!  It was such a great atmosphere with some of my friends saying that it was like a school reunion, this made me really happy as it's one reasons why I wanted to have a party!  I cannot thank everyone who came enough nor can I stress just how much it meant to me.

With my family having some much needed fun!

Amongst my friends I'm known for being the first and last one on the dance floor so even though my treatment has meant that my legs are really weak I managed to dance along to the brilliant band we'd booked!  They too really make my night and have been supportive since!

A quote from the band - Dr Frankenfish

"Great fun playing for a very special lady's party at Louth town hall on Saturday! Anna Mamwell and Lee Mamwell, we loved it-happy birthday and well done!! See you soon we hope "😁

Imogen was tearful and emotional

My Mum and Aunts 'acting their age!'

My Sister

My Mum and Dad

Photo Booth Fun!

Meeting my Vampire the Bone Marrow Demon!

After spending my first night in hospital totally unaware that I had Leukaemia I was in a room all on my own when a registrar came in looking rather sheepish.  This was the first time I met him but, as I was to find out we became very well acquainted over the next few months!  In fact I ended up calling him 'The Vampire' as he was always taking my blood or bone marrow!  He was amazing and I trusted him 100% he is so passionate about what he does which gave me total confidence in him.

His first words to me were 'Don't get upset...what you have we are dealing with...I need to take a bone marrow sample.'

I didn't know what I had at this point and he couldn't tell me until it was confirmed by the bone marrow sample but my medical team, including my GP had a pretty good idea it was Leukaemia because of my blood test results.  I remember thinking 'Why should I be upset...have I missed something?'  I asked if I could wait for my husband to arrive to hold my hand and he agreed he would come back shortly.  When he did my husband still hadn't arrived, I asked if we could wait to which he replied 'No...we cannot wait any longer' again I didn't realise how serious it was.  He explained the procedure which is pretty invasive and scary but I remained calm asking if one of the nurses could be with me while he did it.  I will never forget the look on her face when he had my sample on the slide...it was a look of horror!  

I laid on my side and was given a lidocaine injection into my hip to numb the area before he began taking the sample.  He then inserted a needle into my hip bone through to the centre of it.  I felt a pulling sensation and then a pop with a sudden sharp pain, the only way I can describe it is like when you knock your funny bone but more painful!  When he showed me the core of marrow he'd extracted I was more interested in the size of the needle used...the biggest needle I'd ever seen!  I had this done several times during my treatment, once my husband watched and he told me that the registrar had literally 'screwed' into my hip.  I'm glad I never saw what he was doing at the time but as it's a vital part of Leukaemia treatment there was no way I would refuse it and I'd still have it over and over again!

I had a bone marrow aspiration then a bone marrow trephine, these samples were then looked at in a laboratory to confirm I had Leukaemia and find out which type I had.  My samples were also DNA tested to find out which cells had mutated to determine which treatment regime would give me the best chance of survival.

It was a couple of hours after this that the consultant came into my room and gave me the diagnosis of Leukaemia.  I have written a separate post about my mutated cancer genes...cytogenetics! 

If you ever need to have this procedure it is quite tough but your clinician will do their best to make it as comfortable as possible. My 'Vampire' took samples from me several times and really was so kind and caring, constantly reassuring and talking me through it helping me to remain calm every time. 

He's certainly the nicest Vampire I've ever met!  His real name...Pavel Chudakou and he is simply the best!!!

Much love...Butterfly In Remission 💞

Looking in the mirror!!

In hospital it was fairly easy to avoid mirrors and as I was an inpatient for weeks at a time I wasn't at home much.   Because of this I hadn't taken much notice of my appearance and I had been really poorly a lot of the time.

I distinctly remember the first time I really looked at my changed appearance, it was when I was at home during one of my 'breaks' between chemotherapy treatment. There are mirrored doors on my wardrobe which is right next to my bed so difficult to avoid.  One morning when I woke up I sat on the edge of the bed, looked at myself and the words "Yeah...you've definitely got cancer" came out of my mouth.  It was probably the first time I had really admitted it and even though I was going through the brutal treatment a little bit of me was still in denial. Leukaemia still didn't feel like it belonged to me, I guess it's the mind's way of protecting you from having a complete breakdown.  It was quite a while before I could say the word 'Cancer' somehow the word 'Leukaemia' seemed less scary...strange the things that go through your head.

I looked fragile, was bald and emaciated, it was like looking at a stranger.  Of course I still felt like the same person on the inside but I certainly didn't recognise the person I was looking at!

More about Bloodwise!

Before I had Leukaemia I have to admit that I didn't know anything about the blood cancer charity Bloodwise, formally known as Leukaemia and Lymphoma Society.

This post explains what the charity basically does without going into too much detail as there is so much they are involved in!  If once you have read this you would like to know more please visit their website  https://bloodwise.org.uk/

The charity now known as Bloodwise was founded in 1960 by the Eastwood family after the loss of their daughter to Leukaemia.  You can read more about this on the https://bloodwise.org.uk/ website .

So what do Bloodwise do?  The answer is lots and lots!! They raise money, research, campaign, help and support and share learning!  One of their main achievement is that the UK's blood cancer research leads the world thanks to the money Bloodwise has invested!  Today two thirds of everyone diagnosed with blood cancer will still be with us in 5 years time, in 1960 everyone died of the disease eventually!  Major advances in all cancer medication have come first from blood cancer research so changing lives even beyond blood cancer!  It was blood cancer research that proved that chemotherapy could be used to treat cancer, a finding that's given hope to millions of people across the world! 

Funds raised by Bloodwise is invested in vital research, more money means more lives saved!  Since 1960 Bloodwise have invested 500 million pounds in world class blood cancer research.    At any one time they have over 90 million pounds invested in research!  They are currently funding over 1000 researchers and clinicians over 220 active research projects!  They don't do research for research sake, only funding the very best research.  By using three expert committees they decide on which research to fund.

They focus on 5 big targets but, these are just some examples of their life saving research.  These targets are in;

1. Myeloma
2. Diffuse large B cell Lymphoma
3. Acute Myeloid Leukaemia (the blood cancer I have)
4. Myelodysplastic syndromes
5. Chronic Lymphocytic Leukaemia

Beating childhood Leukaemia, Bloodwise have changed the world for children with blood cancer. Acute Lymphoblastic Leukaemia is the most common childhood cancer, it's in this that they have made the biggest impact.  Survival rates were 1 in 10 and now are 9 in 10!

Bloodwise campaign for blood cancer medicines, treatments and patients. They are currently working with NHS professionals and the Anthony Nolan charity to look into the quality of care for blood cancer patients as well as the post treatment needs of patients living with blood cancer.  The aim of this is ultimately to raise awareness in parliament - championing the needs of blood cancer patients! They work with patients, the government, the NHS, parliament, health care professionals, regulators and experts in the field in order to do this.  A report by Bloodwise found that thousands of blood cancer patients are missing out on essential care every year!

Bloodwise set up the Trials Acceleration Programme - TAP.  They developed this as potentially new life saving clinical trials were taking up to 10 years to actually get to a patient.  In the past life saving new treatments were getting left on the shelf.  A researcher could have a great idea but struggled to get it off the ground for various reasons.  TAP helps set up clinical trials more efficiently for example handling the bureaucracy involved so researchers can get on with their new treatment ideas. Pharmaceutical companies have supported TAP by providing 90 million pounds worth of drugs to use in the trials.  TAP has fast tracked the journey of a trial from laboratory to patient, previously it took 10 years whereas now it takes 2!  Also the cost of a patient taking part in a trial has halved!  Its attracting the attention of government and other research organisations as its a model that will work for a diseases not just blood cancer!

They fund the HMRN - Haematological Malignancy Research Network

Our little fundraiser!

My Daughter has become quite the little fundraiser!  When I was in hospital she wanted to give all her money to the nurses as they were the ones looking after me!  I then explained to her how raising money for charities works and where the money donated goes. To her it was simple, give her money to the people who were helping to make me better!

The first thing she wanted to so was make loom band bracelets to sell at the local Race for Life.  We came up with the idea of making orange and white ones as this is the colour of Leukaemia.  Imogen, Ella and I made lots and lots of them, it gave me something to do while I was in hospital!  They sold all of them at the Race for Life and the money was given to Cancer Research UK.

Ella and Imogen

When World Cancer Day came up Imogen decided she wanted to sell the Unity Bands and between us we raised nearly £200.  Every day after school she would come home with a list of names of children who wanted to buy one.  Thanks to a local contact who really helped us we managed to keep up with demand but only just.  He also provided Imogen with a hat, bib and banner which she was really happy to wear.

Ready for World Cancer Day

After this Imogen decided she would also like to sell Bloodwise pin badges at her school so once we had their permission she started planning her campaign. With the help of her cousin, Ella, they decided on a script of what they wanted to say to the children about blood cancer and Bloodwise. The school were really supportive and allowed them to have time out of their classes to go around each year group.  This was really brave of her and was all her own idea.  In total £160 was raised, Bloodwise were really pleased and sent the girls a certificate of appreciation.

My Husband and I are really proud of her and are so happy to see her getting something positive out of what has been a very traumatic experience for her.  It is a great life lesson for her and has helped her self confidence.  I am sure she will be doing lots more fundraising in the future.

The girls with their certificates

   

Blood Cancer - The Sneaky One!

Before I was diagnosed with Leukaemia I was totally unaware of what it actually was and I now know that recognising the signs and symptoms can be a challenge.  It's certainly a sneaky one having symptoms that are often vague and non-specific making it potentially difficult to diagnose.  With some blood cancers (like the one I have) immediate treatment is crucial as they progress rapidly and aggressively. 

You see blood cancer thinks it's clever by hiding behind other minor illnesses like flu and the symptoms can easily be put down to our busy lives.  It's because of this people often put off going to their GP, I certainly did.  My cancer was picked up in a blood test because I had been feeling unwell but not because Leukaemia was suspected.  However, the more we do to raise awareness the less it will be able to hide!! This is something I feel passionately about now in case you haven't already guessed!

A GP may only see one case of Blood Cancer every two years! I have spoken to a GP I work with and she states that she's only every seen two cases of Leukaemia in her whole career!

Remember - BE AWARE!

Are there risk factors relating to Leukaemia?  Experts are not sure on the causes but there are some things that can make someone more prone;

• Radiation exposure
• Benzene exposure (smoking)
• Genetic factors
• Past chemotherapy
• Blood disorders
• Auto immune conditions

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A FEW FACTS

Median age at diagnosis is 66 (I WAS 39 THOUGH!)

5% of new cases are 35-44yr olds

46% survive Leukaemia for 10 or more years.

IN 2012 4,800 people died from Leukaemia – that’s 13 every day.

In 2013 - 9,301 new cases in the UK

Over the past decade cases of Leukaemia has remained relatively stable

Leukaemia is the 9^th most common cause of cancer death in the UK

33% of blood cancers are diagnosed via the emergency admissions route.

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