I decided to see my GP because I was having daily headaches which were getting worse and worse, making work very difficult. I also had a full body rash that I thought was a food allergy; I was constantly breathless when trying to do everyday activities, such as changing a duvet cover or climbing upstairs. I was constantly tired too, but I thought it was because of my thyroid (I have had thyroid problems since my late teens). I was getting viral infections a lot more frequently than I did before, and I was also losing a bit of weight (which, like most people out there, I thought was a great thing).
I took some time to see the GP, about a year since the rash started. I took this long because, even though I had all these symptoms, I genuinely thought they were unrelated and they didn’t bother me that much. I thought the headaches were due to stress of learning new skills at my new job; the rash I thought was a food allergy; the tiredness, I thought was because I was out of shape; the weight loss I was happy about, because I thought walking 5km a day was finally working. As I mentioned above, I was a bit tired, but I have felt that before as I have been hypothyroid since my late teens, so I never thought much of it.
During the appointment the doctor measured my blood pressure and it was very high. This had never been the case for me; I’d always been the low blood pressure type of person, the one who gets dizzy when it’s too hot and so on. As the high blood pressure was very unusual for me, especially considering my age – I was 31 at the time – my doctor asked for some blood tests just to check if the high blood pressure that runs in my father’s side of the family had caught up with me or if something more was going on.
I took a long time to do my blood tests as the phlebotomy clinic in my town is only open during times that I had to be at work, and I didn’t want to be late or leave work early, especially as I had just started working at the office recently. On a Monday, I woke up earlier, got the blood tests done and went to work. At around three in the afternoon, I received a phone call from my GP. She told me that one of the results in my full blood count wasn’t within the normal guidelines and that they had scheduled an appointment with a haematologist at the hospital for me.
Needless to say, I didn’t sleep much that night, I was terrified about what it could be and feared it could be leukaemia (because that’s the only think I could think of that would explain such a fast referral to a haematology department).
The next day, it was the 6th of June, I went to my appointment, got blood tests done before I saw the consultant and my fears were confirmed. I had chronic myeloid leukaemia (CML). I didn’t even know there were different types of leukaemia, much less that there are chronic ones.
I found out during the appointment that some of the symptoms I was having, and just shrugged off, were actually signs of leukaemia. These were: excessive sweating, especially at night (mine was all the time), tiredness (I thought it was just because I was doing more exercise), breathlessness (I had pinned this down to being out of shape), a rash (I thought it was a food allergy) and unintended weight loss (I thought my diet and exercise were finally working!). Had I known all these symptoms combined could mean blood cancer, I would have sought out my GP a lot sooner.
In hindsight, I can see that I really shouldn’t have delayed getting my blood tested and that the symptoms I had were not caused by individual things, as I thought, but were all part of a bigger problem. Thankfully, CML in its chronic phase is manageable by taking chemotherapy tablets at home and having blood tests every three months (sometimes more often). Also, most people go on to live a normal life-span on the current chemotherapy treatment – it also doesn’t make you totally bald, which is a plus! Even though the current treatments do have loads of side effects, it’s good to not have to travel every few days to a hospital to get chemotherapy drugs pumped into me, and in a way I’m thankful I have CML and not one of the more aggressive types of leukaemia.
Regarding how life is now and the treatments I’ve had, the treatment hasn’t been easy for me.
At first, I was treated with hydroxycarbamide and allopurinol (to avoid gout that can happen due to the rapid break down of cancerous cells). The idea was to bring my white cell counts down as quickly as possible while further testing was conducted. The first two weeks were bearable, but I got more side effects as the drug built up. I had so much nausea and zero appetite. I lost about 20lbs in 5 weeks, it was a bit frightening. I was still managing to work at this point. I was determined to keep life as normal as possible.
After the results came back positive for the Philadelphia Chromosome, I was put on imatinib 400mg. I was told the side effects would be milder, but this wasn’t the case. It gave me terrible muscle cramps and joint pain. It also affected my stomach, causing gastritis, vomiting and diarrhoea. After four weeks on imatinib, I was forced to take leave from work, as I was in too much pain and had too much brain fog to function. The doctor kept me on imatinib for around four months, but I was intolerant to it.
I was switched to nilotinib, but it also gave me terrible leg cramps, fatigue, triggered daily migraines and a full body rash that drove me crazy with its itchiness day and night. All these side effects were out of control, even with other medications to help control it, but again, after a few months on it I was considered intolerant and switched to bosutinib.
It is now a little over a year since diagnosis, and I’m still taking bosutinib, but the side effects are still too intense and preventing me from having quality of life, especially the fatigue, brain fog and very intense muscle cramps and bone pain. I’ve recently been referred to one of the centres of excellence in CML, Hammersmith Hospital in London. I met the lead consultant for this hospital during a patient meeting sponsored by Leukaemia Care, and she said they can offer me more treatments that might suit me better, considering how sensitive my system seems to be to CML drugs. I asked my current consultant to refer me after the meeting at Hammersmith.
If I had seen the Spot Leukaemia campaign when I had all those symptoms that I pinned down to other things, I wouldn’t have taken so long to see the GP and would have possibly been diagnosed a lot sooner.