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Like many of those diagnosed with chronic lymphocytic leukaemia (CLL), it came as a surprise whilst I was being treated for unrelated issues.
I had been in hospital for three weeks and about to be discharged when a consultant Haematologist came to speak with me. I will never forget his words: ‘I think you have a type of leukaemia’. Those words hit me like a sledge hammer, and after telling me not to worry, he said he would contact me when further tests had been carried out. He then left, and I was discharged for follow-up tests in relation to my other ailments.
True to his word, a week and a half later on 7thJune 2007 at 1.10 pm, the consultant rang me with confirmation that I had CLL and that he had made me an appointment in a general Haematology clinic at another local hospital. Luckily for me it was Nottingham’s City hospital, which was in the very near future to have a specialist CLL clinic.
Having now been diagnosed, like I am sure many others did, I began asking myself questions such as ‘what does this mean?’, ‘am I going to die?’, ‘when will treatment begin?’. So, whilst waiting for that first appointment, I began to research CLL from credible websites, so I could understand what was happening to me. Through this research I learned the term ‘Watch and Wait’, or as many of us refer to it, ‘Watch and Worry’. The key thing I learnt from this research was that many people remain on Watch and Wait for the rest of their lives without the need for treatment. Unfortunately, that would not be my path.
I want to point readers at this stage to the CLL Support Association, also known as CLLSA. It’s a unique organisation designed to support CLL patients and provide information and support to those diagnosed, as well as their carers or partners. Its flagship is a series of meetings held around the country where they host specialists in the field to give talks on current research and treatments. I highly recommend readers to go to their website www.cllsupport.org.uk.I was soon to learn there is no hurry with this disease and I am sure others will find that difficult to come to terms with.
I began my Watch and Wait with nine-month intervals between check-ups, rapidly decreasing to six then three-month gaps, and as I got closer to treatment, just four weeks apart. As patients, our symptoms vary greatly, so what my problems are you may never see, or their effect not be the same for you. On top of CLL, I have several other medical problems which complicated my case. However, I put the serious bouts of fatigue, night sweats, headaches and breathing problems down to the CLL. My bloods, whilst abnormal, were not in the ranges that would indicate treatment, but along with the swollen spleen, which felt like laying on a tennis ball when in bed, and a nurse looking at my CT scan, which revealed enlarged lymph nodes, saying, ‘I was lit up like a Christmas tree’. In my case though the decider was breathing problems. By August 2010, it was agreed to begin a six-month course of chemotherapy. FCR was and still is the Gold Standard treatment for CLL.
FCR treatment is performed as an outpatient. My first day was spent on a day-case unit having a small dose of rituximab administered intravenously over several hours to check that I did not have an intolerance to it. Fortunately, I did not, so I returned the following day to complete the dose. At the end of the IV rituximab, I was given fludarabine and cyclophosphamide (FCR) to take orally at home for the next five days. After four weeks from the beginning of treatment, the cycle was repeated, but with just one day of intravenous treatment.
After the third cycle, I had a reaction because I was on another chemotherapy drug for arthritis, which I should not have been taking at the same time as the CLL treatment. This short spell in hospital did not interfere with the next cycle of treatment. I managed a further two cycles, making five in all. The range is three to six cycles for it to be effective. Treatment is effective on 90% of patients for an average of five years, with 20% of patients not requiring treatment for 10 years.[1]
I am now in my eighth year after treatment. The symptoms are starting to return more aggressively, and my blood counts are rising. So again, I am in the dreaded Watch and Wait with three monthly check-ups. Fortunately, the hospital treating me offers an emergency telephone number for me to use if my temperature goes above 38°C, I feel generally unwell or develop flu like symptoms, to give me support. On top of the fantastic support of the CLL team at the hospital, I have the most important support of family and friends whom I can confide my worries in.
[1]Chronic Lymphoid Leukaemia (CLL) A Guide for Patients; Leukaemia Care; Ver 2, 12/2017