{"id":1703,"date":"2017-09-19T12:46:23","date_gmt":"2017-09-19T11:46:23","guid":{"rendered":"http:\/\/bashingtonpost.com\/?p=1703"},"modified":"2021-12-30T16:40:36","modified_gmt":"2021-12-30T16:40:36","slug":"acute-myeloid-leukaemia-aml-my-story","status":"publish","type":"post","link":"https:\/\/bashingtonpost.com\/index.php\/2017\/09\/19\/acute-myeloid-leukaemia-aml-my-story\/","title":{"rendered":"Acute Myeloid Leukaemia (AML) – My Story"},"content":{"rendered":"

Acute myeloid leukaemia (AML) is a type of cancer that affects the blood and bone marrow. AML is characterised by an overproduction of immature white blood cells, called myeloblasts or leukemic blasts. These cells crowd the bone marrow, preventing it from making normal blood cells. They can also spill out into the blood stream and circulate around the body. Due to their immaturity, they are unable to function properly to prevent or fight infection. Inadequate numbers of red cells and platelets being made by the marrow cause anaemia, and easy bleeding and\/or bruising.
\nAcute myeloid leukaemia is sometimes called acute myelocytic, myelogenous or granulocytic leukaemia.
\nLeukaemia Foundation 2017, Acute Myeloid Leukaemia (AML)<\/em>, Accessed September 2017 <http:\/\/www.leukaemia.org.au\/blood-cancers\/leukaemias\/acute-myeloid-leukaemia-aml<\/a>><\/span><\/p>\n

[warning]This article contains pictures post surgery and describes the effects chemotherapy can have on the human body. [\/warning]<\/p>\n

The Bashington Post was contacted recently by a plucky chap who has been through the process of being treated for AML and who was cured of the disease and wanted to share his story. It wasn’t all plain sailing as you will read but he lives to tell his tale. He wrote to us saying that;<\/p>\n

In November 2008, I was diagnosed with AML. The signs were not obvious to me at the time and I would like to tell my story which I hope will help others who may be starting down a similar road to the one I was facing a few years ago.
\nIt all began as I was sitting on my bed one day, legs crossed, leaning forward using my laptop. I was in the final year of my doing my degree and this position was not uncommon for me at this time. On this particular day, whilst working I felt a twinge in the middle of my back. I had been sat in that position for a while and had assumed it was my body telling me it was time to get up and move around a bit.<\/p>\n

As the days passed I didn’t think any more of it until I started to get small, electric shocks going through my arms every so often. I have never had a trapped nerve or anything else like that so I assumed I had a nerve in my back that was playing up or I had pulled a muscle. These electric shocks continued for a week or so and it’s at that point I decided to book an appointment to see my doctor to find out what was going on.<\/p>\n

After a brief examination by my GP he said it was quite possible that I had trapped a nerve and suggested I see a chiropractor who could help free it up. So, I went to see a chiropractor, once a week. The chiropractor came highly recommended and was a young Frenchman who told me that he couldn’t just manipulate the area of my back where I had the issue, he needed to do it stages. Each week he would manipulate my back, starting off at the base and slowly moving up my spine with each visit until, after manipulating me a number of times the day came where he was going to adjust the part of my back that I was having trouble with. The middle of my back was not getting any better and by this point, the electric shocks were becoming more frequent, I was having trouble lying down and could not lie down flat on my back comfortably. On the last day, as the chiropractor positioned me ready for the movement, I said to him that it didn’t feel right and I did not want to continue with the treatment. It felt to me like his actions would do more damage than good and that it would be very painful so I left and went back home. My back (in between my shoulder blades) at this point felt stiff like it was swollen, and I was having a little trouble walking too, each step I took now was causing discomfort in my back and each step was sending those electric shocks not only into my arms but also into my legs and into my head. I stood next to my bed, arched my back and threw my shoulders back in frustration at the discomfort in the hope that I could free up this trapped nerve, there was a big white flash. I awoke slumped on the floor up against the radiator, next to my bed. I must have short-circuited myself somehow. I have no idea exactly how long I was out for but it wasn\u2019t long a few minutes at most I think.<\/p>\n

A few days later I went to see my GP again and told him the issue with my back was getting worse. I was told that trapped nerves in the back are difficult to treat and a lot of them free themselves up naturally. I was given some painkillers and told to rest up for a few days. Concerned with my worsening condition I decided to get a second opinion, from a different chiropractor this time. At this point, I was struggling to get about and had to hold on to things sometimes. I remember approaching this new chiropractor after walking into town (about 20 minutes) and having to hold onto the railings outside the office for a bit before going in. As I entered the chiropractor’s office, he immediately said he was concerned about the way I was walking and got on the phone to a colleague he knew at the local hospital. He booked me an appointment to see the consultant but the appointment wasn\u2019t for a few days, so I went back home to rest.<\/p>\n

The next morning, I woke up and I could not get out of bed. My legs would not respond, I called for an ambulance and was taken to hospital.<\/p>\n

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I was booked into A&E. A few tests were done by the nurses whilst I was laying on the bed waiting to see a doctor. The nurse used a small piece of tissue paper to tickle different parts of my legs and asked if I could feel it, which I could. The nurse then asked me to raise my legs and apply pressure to his hand to test the strength in my legs, but there was not much there. When asked to wiggle my toes, I tried to wiggle them all, but they didn\u2019t move at all. The doctor concluded that further investigation had to be made and I was popped into a room to wait. A short while later a doctor took a blood sample which was promptly sent off for analysis. After a couple of hours, the results were back and it was not good news. The results showed that my white blood cell count was a lot higher than it should be. I was told that I had an issue with my blood and they needed to send it off to a different hospital to be scrutinised and that I would be staying the night. The doctors said that if the result of the blood test was bad news, I would be going to a specialist unit for treatment and if the results revealed something that was easily treatable I would be on my way home soon.<\/p>\n

The following morning came and I woke up to four or five doctors standing around my bed and they broke the news, it was leukaemia and I was going to be in the hospital for a few months. I was told that to fix the problem I would need a bone marrow transplant and that the procedure was lengthy and came with risks. My mother who was sat next to me at the time started to cry and grabbed my hand and held it tight. I looked at her and told her not to worry and that I wasn\u2019t going anywhere. This news for me didn\u2019t really sink in at first as aside from the electric shocks and the trouble walking, I didn\u2019t feel like I had cancer. When you have cancer you are meant to feel really tired, aren\u2019t you? I didn\u2019t feel fatigued at all, I was just having some issues getting around. To say that I wasn\u2019t a little taken aback by the news would be a lie, but it didn\u2019t feel like the right diagnosis to me. A million questions go through your head at this point. Questions like; What has caused it? Am I going to die? Is this it for me? Risks with the procedure? What risks? After the initial shock of being told such news, you do settle down and some rational thoughts do return. I didn\u2019t know anything about leukaemia, or bone marrow transplants, never really had to know. All I could think about were the adverts on the TV that show a bald child with a sad face. My lack of knowledge and experience around the subject of blood cancers wouldn\u2019t last much longer. I was about to find out all about it.<\/p>\n

The following day I was taken to a different hospital and wheeled through on my trolley to a specialist cancer unit where I was greeted by the nurses who explained to me what was going to happen. I was booked in for a CT scan and an MRI scan that very same day. The scans were done that evening and they revealed the issue that I had been suffering with for so many weeks, a tumour, about 10 inches long around the top my spine. The tumour had grown around it and was pushing against my spinal cord. This pressure was enough to prevent the signals sent by my brain reaching my legs which is why they didn’t move when I wanted them to. This went some way to explaining that big flash and collapse I had experienced too.<\/p>\n

The doctors told me that they had to move fast with the treatment, the cancer was aggressive and if they wanted to prevent me from being wheelchair bound for the rest of my life or even worse to succumb to the illness they had to get on with things. I was taken down to theatre where they installed a Groshong line into my chest so the chemotherapy drugs could be administered. The amount of liquid chemotherapy I needed would have been too much for the veins in my body to cope with so they installed a \u2018line\u2019 into the top of my heart so the chemotherapy solution could be fed in directly and pumped around the body.<\/p>\n

<\/p>\n

I was started on a chemotherapy regime called FLAG-IDA<\/a> immediately. This for me was a daily, two-stage process. In the morning, I would receive a big syringe full of orangey\/pink liquid which was slowly pushed in by hand by one of the nurses, followed by a big bag of milky yellow liquid, administered by a machine. In the afternoon, I was given another bag of yellow liquid by machine. I used to wonder where all this liquid went and why my body wouldn’t just fill up, but it never did. The nurses said that as soon as the chemo was in, they wanted it out. So, going to the loo often was a good thing. I updated my university who were very supportive and flexible regarding my situation. I had decided to carry on with the degree from hospital whilst having the treatment but after a few weeks of the treatment I had to put the degree on hold as the treatment was taking its toll.<\/p>\n

It is common knowledge that chemotherapy treatment is not very nice and it made me sick too. I was sick every time. Some people are sick, and some others are not. I was the former for sure. At the beginning of each dose, I didn’t feel too bad but as I progressed through I felt more and more sick until eventually I couldn’t hold back anymore. Each bag of chemo by machine took around 2.5 hours to complete and was attached to the red line in my chest.<\/p>\n

The doctors would administer anti-sickness drugs, through the blue line, after each dose to stop me from vomiting. I would eat breakfast but this would not have time to digest before I saw it again and likewise with dinner. I was eating at every opportunity but it wasn’t enough and it wasn’t too long before I was on food supplements, the high energy milkshakes. The taste buds are one of the first things to go when being given chemo. The cells in the mouth last around 48 hours. When these are killed off everything you eat tastes the same, like cardboard.<\/p>\n

The chemotherapy was given to me twice a day for about 2 weeks and then I’d be given a rest for a week, and then the regime would start over again. I had to take plenty of pills too. At its peak, I was consuming just over 50 a day along with some liquid medicines. They were mostly to prevent infections. Some were anti-sickness, some anti-seizure and a lot of them were tablets to protect me from the other tablets I was taking. Chemotherapy (as I write this) cannot target just the bad cancer cells in the body, it kills everything. This led me to have a number of platelet and blood transfusions when my blood or platelet counts became low. I had around 10 of each throughout the duration of my treatment.<\/p>\n

I also had the first of my bone marrow harvests whilst at this hospital which was the most painful part of the whole procedure for me. The doctor would drill a hole in my lower back and syringe the bone marrow out from my pelvis. Sounds awful, and it was pretty bad. The area at the base of the back would be anesthetised and the hole would be drilled by hand using a kind of corkscrew device. Once the hole was made a syringe would be placed in the hole and the bone marrow withdrawn. Once the bone marrow starts to be extracted your pelvis starts to ache. The faster the doctor draws the bone marrow out the stronger the ache. Even with the area anesthetised it was pretty uncomfortable. The first bone marrow harvest withdrawn was frozen and would be used to try and reverse the procedure if it was all to go terribly wrong. I would eventually have 3 smaller bone marrow harvests by the same process.<\/p>\n

I had six weeks of this course of chemotherapy with an additional two weeks towards the end of my stay at the local hospital. My hair started to fall out around week 4 and I remember waking up and seeing some hair on my pillow. I could easily pull clumps of my hair out and when showering I would lose a lot of it. I called my cousin, who is a barber, and asked if he would come and shave my head for me. I also had to have a couple of injections of chemotherapy directly into my spinal fluid, this was a quick process and was just a case of leaning over a chair and being very still. All this treatment at my local hospital was just the prep work, preparation for being transferred to London for the bone marrow transplant itself.<\/p>\n

<\/p>\n

I arrived at Kings College Hospital in London and was shown around the Derek Mitchell ward which would be my new home for the duration of the transplant. It was basically a long corridor with 7 or so rooms on either side. Each door had a glass window which was striped with partially frosted lines. I peered through the window of a few of the rooms. Each room had a person in, each person was bald and I remember finding it difficult to determine their gender at a glance. All residents were different ages, some elderly, some adolescent and some were children. It was a bit like a scene out of the Matrix and felt a little eerie. At the end of the corridor was the recreation room with a sofa and a TV with a PlayStation attached to it. The doctor told me there was a kitchen which prepared the food for the patients and would accommodate our requests and would make any meal we fancied, within reason. I was taken to a meeting room where we discussed my stay and that I was here to have a bone marrow transplant. I was handed a handful of leaflets which explained the procedure and a consent form with a space at the bottom for my signature. The form said the procedure was not guaranteed to work and that complications could arise that would ultimately lead to my death. I asked the doctor to be frank and to tell me what chance I had of surviving, he said I definitely had chance. I asked for a percentage figure, he said about 20%. There were no other options for me, so of course, I signed the form. I was led to a room with one of those frosted windows and made myself comfortable. The room had a big air duct in the roof and one above the door. The treatment would lead to me being susceptible to bugs and unable to fight infections without support. The air ducts had micro-filters in to filter out the bacteria that could lead to those infections. There was a bathroom, with a sink and shower which had a seat and lots of handles. The doctors said that I would not be allowed to leave the room during the process and that I would be in the room for 3 or 4 weeks.<\/p>\n

The next day I was taken down to the theatre to have the Groshong line removed and have it replaced with a new line called a Hickman. The chemotherapy continued only this time it felt a bit stronger. I was sick for longer and needed more anti-sickness drugs. Along with the chemotherapy came the next phase of my treatment, a course of total body irradiation therapy. About a week before the radiotherapy was to begin I was advised to cover my whole body with moisturising cream and keep it moisturised. This would prepare my skin for what was to come. The radiation therapy was necessary to kill off any cancer cells that the chemotherapy had missed. I was moved over to Guys Hospital where each day I was popped onto a trolley and taken to a room with a big white machine built into the wall. Once there I was sat in an upright position with legs pulled in and my body packed out with large sacks of Vaseline or gel. This was to make me more of a ‘block’ which made the radiotherapy more effective. A lead shield was placed up against my head, between me and the machine on the opposite side of the room. Once I had been prepared the doctors aligned the trolley with lasers that came from the ceiling somewhere. I was asked if I wanted to have some music on whilst being zapped, I always chose the Bob Marley’s Greatest Hits CD as it filled the big empty room with some nice relaxing vibes. The doctors would then leave the room. There would then be a slight buzzing sound for around 5 or 6 minutes and the doctors would return, remove the gel sacks and I would be wheeled back upstairs. This was repeated for 7 days, twice a day. There are no immediate side effects from having the radiotherapy but the side effects would come. This is why I had to put all that cream on a couple of weeks before hand as around 10 days after the treatment I had the effects of sunburn. My skin was red like I had been out sunbathing but was so very moisturised and soft. This side effect lasted a week and just like sunburn, eventually disappeared with no lasting effects. By this time, I was feeling the full force of the treatment.<\/p>\n

I remember lying in the room and trying to sleep but couldn\u2019t because my mouth was constantly watering. The chemo was poisoning me and I wanted to be sick but the anti-sickness drugs were preventing it. I had to lie on my side with a bundle of tissue near my mouth so the water could be soaked up. Otherwise it was impossible to sleep. I was also in nappies by this point having slightly lost control of some other systems. As the chemo continued to kill off my bone marrow the cells in my mouth slowly died out and stopped being replenished. These cells (taste buds etc.) have a short life span and only last a couple of days. Without these cells being replaced by the bone marrow, the inside of the mouth and the tongue start to blister and crack which is quite painful. The medicine for this is in-house medical cocaine mouthwash. The hospital produces this solution the sole purpose of which is to numb the mouth. I could only have it every 4 hours but it did a great job of numbing not only my mouth but most of my head. It\u2019s at this point that I wasn\u2019t eating very much at all and had lost over 10% of my bodyweight. This is the time when the doctors have to make a decision on how to get calories into your body. It wasn\u2019t a decision that was taken lightly by the bone marrow transplant team however, the days of me eating orally had come to an end and it was time to be fed by a drip. A big red bag, of what looked like milk, would be attached to a machine and that machine to a line in my chest. It contained all the minerals, nutrients and calories you need in a day. I also had a permanent morphine syringe connected up which automatically administered morphine. The syringe was placed into a dispenser which would compress ever so slightly every 10 minutes or so. By this time, I had a lot of machines connected to me all doing different things. There were three machines connected to the line in my chest, one delivering antibiotics, needed to stop infection. One delivering the final course of chemo. One delivering the food and calories I needed and the morphine drip stuck in my backside. It was very impressive.<\/p>\n

<\/p>\n

With the FLAG-IDA course complete I was given a very short course of another chemotherapy drug, this I think was ultimately what killed my bone marrow off to make way for the donors. This made me feel sicker and led to the worst couple of days of all. My face was all puffy and my skin started to dry up and crack. This is the point at which your bone marrow is killed off and your body is not producing any stem cells (which become new skin cells, red blood cells, white blood cells etc.). It felt as if I was going off, like a piece of fruit.<\/p>\n

On the 23rd April 2009 at around 11am the big day had come. The nurse on duty brought in a bag of salmon coloured liquid and attached it to the machine and the machine to me. Very much like a blood transfusion, it was just a case of sitting still and watching day time television. The process was painless and was a bit of an anti-climax.<\/p>\n

13.6 million stem cells were fed into my blood stream. Stem cells should not be in the bloodstream and the body knows this, so it absorbs them into the lungs. Stem cells do not live in the lungs either so the body absorbs them to the lowest level, the bone marrow where they do belong. Much to my delight the chemo stops too.<\/p>\n

As the days passed there is a juggling act of ‘rejection’ where just as if you had an organ transplant the body tries to reject the foreign cells. You get (and should have a little bit of) something called graft-vs-host disease which is your body reacting to the foreign implant, the stem cells in my case. I was given a course of anti-rejection drugs to help the bone marrow settle. The dosage was high to start with and then as my body started to accept the donor’s bone marrow this anti-rejection drug was slowly phased out over a period of a couple of months. The nurses would take samples of my blood and bone marrow from time to time to test how much of the bone marrow was ‘me’ (which we didn\u2019t want) and how much of it was the ‘donor’ (which we did want).<\/p>\n

Eventually my hair grew back, it was a different colour than it had been before but it grew back. My blood group changed too. Over time my hair did return to its pre-transplant natural colour.
\nI was lucky to be young enough and healthy enough to be offered the option of getting rid of this disease entirely instead of a containment option (or living with the cancer). I was 33 at the time and was in fairly good but not athletic shape. I was a smoker (5-10 a day) and had been for 20 years, right up until I was diagnosed. I was advised by my consultant before the treatment began that it would be best if I gave up the fags as I needed the give my body the best chance of beating the illness and to be in the best shape for the treatment as it was going to be tough. I have not touched a cigarette since.<\/p>\n

<\/p>\n

I have spoken to close family and friends about the transplant but have not gone into such detail as I have in this article. After speaking about the transplant people have said how brave I was and that it must have been really tough. It was tough at points but I am not the hero of this story. The whole process was something that was done to me, I can take no credit as I just sat through it all. The real heroes are the doctors and nurses, the consultants and the bone marrow transplant professionals that conduct the procedures.  The NHS staff saved my life and never asked me for a penny. I owe them my life and will be forever grateful to all of them. And just as important are all the people that have gone through this process before me. The people who paved the way and have shaped the way procedure is done today. It wasn’t always as pleasant as it is now.<\/p>\n

Thankfully, I made it through and sit here today typing out my story. I have been able to spend time with my family and friends and have seen my little niece and nephew<\/a> grow up. I have seen my 40th birthday and have met the most wonderful girl in the world, whom I plan to marry<\/a>. I completed my degree<\/a> and have landed a good job. I had a lot of time to think about things and have come out the other end being much more respectful of life. Not only my own life, but others too.<\/p>\n

It\u2019s not only the medical staff that should be thanked, but the person who donated their bone marrow that day. They would have had to go through a bone marrow harvest and would have probably been in the same hospital as me the day I received the transplant. I am not allowed to know the identity of the donor and only know that he was a 28-year-old male. It is possible for me to contact the donor through the hospital, which I plan on doing this Christmas. I can send the letter to my consultant who will forward it on to him.<\/p>\n

I hope this article helps someone out there who is unfortunate enough to have blood cancer. If you have any questions regarding anything I have written here, I am happy to answer them.<\/p>\n