This post might not appeal to everyone, but if I can help even just one person that is struggling with the diagnosis of acute lymphoblastic leukaemia (ALL), then it is well worth it.
When I was first diagnosed with ALL, I didn’t know what it was, and I didn’t want to know what it was. Professionals were telling me what was happening to my body, but it was as if my mind did not want to process what I was hearing. I just knew it was cancer, that’s all I needed to know at the time. That I was 17 years old and had just been diagnosed with a form of blood cancer that I only knew the name of from a film, ‘Now is Good’. And if im completely honest, if someone said to me what is leukaemia? I could probably only give you a brief answer.
So what is acute lymphoblastic leukaemia? Well, with the help of cancer research uk, I can give you a little bit more of a brief description of what is happening to me and many others. The type of cancer I have affects my blood and my bone marrow. Being an ‘acute’ form of cancer means that it all started very quickly. My bone marrow started to go against me and produced too many immature lymphocytes (a form of white blood cells) which the body needs to help fight infections. These immature cells that my bone marrow was producing started to circulate around my blood and was unable to protect me or function normally. As the number of these leukaemic cells that my bone marrow was producing increased, it mean’t there was less room for my healthy cells. So the cancer began to take over and affect my red blood cells, platelets and any healthy white blood cells I had left.
The main treatment for acute lymphoblastic leukaemia is to use chemotherapy. The treatment process is divided into 5 different phases. The first 4 phases take roughly about 7/8 months to complete and the final stage takes 2/3 years, then you can say goodbye to chemotherapy. These phases are made up of different forms of chemotherapy and steroid treatment which can all sound pretty over whelming in the beginning. The nurses seem like they are talking in a different language with all the funky drug names - and its surprising how similar some of them sound so its easy to get confused. I don't blame the nurses as they are exposed to these kinds of drugs on a daily basis, so of course they are going to say 'Have you taken your 6mp today?' and you will stare at them blank faced and puzzled. It does get a lot easier as the treatment goes on and before you know it you will be speaking this kind of medical language to your family and friends and they will be the ones that have no clue what your blabbing on about.
At the beginning of my diagnosis, I was given the opportunity to go on the UKALL 2011 clinical trial. The UKALL 2011 trial aims to find out whether making up to three changes to the standard treatment can reduce both the side effects of the treatment and the possibility that the disease will return. So of course, if I could help future ALL patients in receiving the best treatment possible, I was going to do the trial.
Induction (Standard Dexamethasone)– Could I tell you alot about my experience with my induction treatment? Probably not. As you can guess, induction is like introducing you to how your life has been changed upside down. So you can imagine my body and my mind was not best pleased to being zapped with all these new chemotherapy drugs that I would have never thought I would have needed so early on in my life. But it had to be done, so my chemotherapy treatment started on the 24th of December 2014. My body was being exposed to these new drugs such as daunorubicin, pegaspargase and vincristine. I also started taking a form of antibiotic every Monday and Tuesday called co-trimoxazole which you will most likely take throughout the whole period of your treatment, including maintenance. I had started an intense 5 weeks worth of steroids (dexamethsone) and I had no idea how they were going to make me feel or what they were even doing to my body. But I knew I was being given everything in my favour, and that this was all going to help me. So I just got on with it, no questions asked.
Consolidation- Preparing myself for 10 weeks worth of treatment was not easy. But I knew it was what had to be done. At this phase of the treatment, I knew my body was going to be exposed to even more new chemotherapy drugs and I didn’t know what to expect. You can’t really prepare yourself for the way your body is going to react to something, unless your having it done. So I just had to sit back and hope that my body was going to respond to the treatment well. Lucky enough for me, I experienced very little sickness which I know is something a lot of patients struggle to deal with. During this time, I was just taking life day by day. Going to my treatment appointments and having my chemotherapy a couple times a week. Consolidation can be a rough time due to a chemotherapy called cytarabin, which needs to be given on 4 consecutive days, which can be a right nightmare and make planning your day a bit of a struggle. But you get through it, and just as I started to get into the routine of consolidation, it was time for the next treatment phase.
Protocol M-A (High Dose Methatrexate) – I haven’t been able to speak with many other patients that are dealing with the diagnosis of ALL, but from speaking with some of my nurses, not many patients decided to opt into this treatment phase like I did. The reasons are completely personal, do you want to recieve treatment as an inpatient or an outpatient? Many people will choose outpatient treatment, as who would want to check themselves into hospital for up to 5 days. But for me, being on the UKALL 2011 trial gave me an option, to stick with the trial and have the possibility of being randomised to receive inpatient treatment or to withdraw my commitment to the trial. I had started off my treatment on the trial on the basis that I thought it could help future patients with ALL to receive the best possible care and treatment available. And if that meant I have to deal with staying in hospital to receive my treatment in order to try and help others? Then I was going to do it. I’m not going to pretend that it was all flowers and rose petals during my hospital stays, but if I can help others by powering through this phase of the treatment, then it was worth it. So every other week, I prepared myself for being admitted to UCLH hospital where I was going to receive high doses of methatrexate, followed up by folinic acid to help my cells to recover from the treatment. The good old injection into the thighs is thrown into this treatment phase too, pegaspargase. Which I have now discovered I am in fact allergic too. I also had to take an oral form of chemotherapy called mercaptopurine (6mp) every night for approximately 8 weeks. Sounds daunting right? But you get used to it. Before I knew it, it was all over and I was ready for my next phase of treatment to begin.
Delayed Intensification – The time you can start seeing the light at the end of the tunnel. The time where your so close, yet you feel so far. The final phase before maintenance treatment, and trust me, you would have spoke about maintenance with your nurse numerous times as that is the time you can start getting some normality back into your life, supposedly. Delayed intensification is a mixture of your induction and consolidation treatment merged into one. They are made up of the same chemotherapy drugs, so your body is not being blasted with anything new, but it will most likely be blasted with some drugs your body doesnt agree with entirely. But if you've got through it before, you can get through it again. This time you may even be able to prepare for how your going to be feeling, which may reassure your mind a little more. So the first part of the treatment is made up of everybody's favourite, steroids. It’s a tough time to be at the final stage and then be blasted with treatment that honestly makes you feel like your world is crumbling down. But the steroids aren’t as intense this time around, and you only have to deal with it a week at a time instead of taking them constantly for so long like you would have beforehand. You will re-visit chemotherapy treatments like vincristine, doxorubicin, pegaspargase, cyclophosphamide and cytarabin. Aswell as taking your trusty ‘Monday & Tuesday drug’ like my mum likes to call it, co-trimoxazole.
Maintenance- The end of a gruelling 7 months of intense chemotherapy treatment is over. Although I am not one to experience that sigh of relief moment yet, I soon will be as I come to the end of my delayed intensifcation phase. Maintenance will be your life for the next 2 years, and if your a guy, that can be up to 3 years. During this period, they say you should be able to get some normality back in your life. The battle isnt over, but this is definitely the most gentle phase of the treatment. It mostly consists of oral chemotherapy tablets that you have to take everyday, but when the 2 or 3 years are up, you will probably be thinking ‘what do I have to take today?’ as you would have got so used to having to take some form of tablet every day for so long. It will become your daily routine and you probably wont even have to think twice about taking them. So you will be taking daily tablets, tablets on a Friday, vincristine every 4 weeks that will require a hospital visit, 5 days worth of a low dose of steroids every 4 weeks (which hopefully doesn't have the same effect as the other steroid experiences you may have dealt with) and weekly blood tests. But if you can get through the intense chemotherapy stage, maintenance will be a piece of cake.