What type of leukaemia do you have?
Chronic lymphocytic leukaemia, or CLL. It’s a type of cancer in which the bone marrow makes too many lymphocytes.
Can you describe the events that led up to your diagnosis with CLL?
I had collapsed at a meeting and was hospitalised for an unrelated illness for three weeks. During the investigations in May 2007, whilst in hospital, a haematologist visited me on the ward saying I might have leukaemia, and as I was about to be discharged he said he would phone me at home with the results. On June 7, 2007, he phoned me to confirm I had CLL, and that he would get an appointment sent through from another hospital. No other information was given.
How did you cope with the diagnosis?
I was shocked. Having had experience with a family member who had another type of leukaemia in the early 1980s, I knew that the mortality rate was 75%, so obviously I was very worried. I was left in limbo knowing little about what was happening. I researched on the internet and found the CLL Support Association, who gave lots of information. Here I learnt about the dreaded ‘watch and wait’ – where your lymphoma is monitored until you need treatment – renamed by many as the ‘watch and worry’. I didn’t realise then that it was in the cancer’s early stages. It was always in the back of my mind daily. I was told I may never need treatment, but unfortunately my condition deteriorated quickly and by 2010 I needed front-line treatment.
What symptoms do you experience?
In 2007 I had no problem from the CLL, but between then and early 2010 I began feeling really unwell and I had quite severe breathing problems. Although my white cell count was reasonably high (88) it alone would not warrant treatment. However, after I experienced breathing problems, feeling generally unwell, getting infections – particularly pneumonia – it was decided that I was to be treated with six months of FCR, a combination of fludarabine, cyclophosphamide and rituximab. I was told that I was one of the first patients in this country to receive FCR.
I had been given a life expectancy of five years without treatment. After three months I was admitted to hospital with a temperature of 39.5 and my body covered in hives. I was in for five days, and the cause was put down to another chemotherapy drug that I was using to control psoriatic arthritis. I managed two more months of FCR, but I was too ill to receive the sixth cycle. I did go into remission, but it took 18 months to recover from the treatment and my quality of life never recovered. I do have a lot of other medical problems, which complicates matters.
After three years and eight months my blood began showing the CLL returning. My health deteriorated and I was permanently getting infections. In 2012, after suffering a major heart attack and being released after surgery, I was immediately readmitted for nine days with hospital-acquired pneumonia. The pneumonia was again because of the CLL, which reduced my immune system, and I was then admitted with food poisoning, both salmonella and campylobacter, which was rare as they have different incubation periods.
Most winters I suffered pneumonia, but I was put on preventative antibiotics and antivirals. However, my condition deteriorated quite seriously and, by 2018, the fatigue was causing me to be in bed for 18 hours a day. My consultant wanted to treat me with ibrutinib (which I am now on) but was not allowed to put me on it because of extra restrictions applied by NHS England at the time that were not in place in Scotland or Wales. I started an online petition to remove NHS England’s stipulation that the drug should not be available to patients who have been in remission for three years or more, and was supported by both the CLLSA, Leukaemia Care and other groups.
Unfortunately, whilst fighting this battle for treatment, my consultant was trying other things, such as IV steroids every other day, to try to overcome some of the fatigue whilst waiting for a trial he thought was coming up. During this time, I was on fortnightly checks, and when I next went in for an outpatient appointment I was admitted for eight days as my blood pressure was 76/52 because of infection. I was on IV antibiotics for seven days which I responded to, and it was during this time I received a phone call from Sean O’Neill, a senior reporter for The Times, who was also involved in the fight for fairer access to ibrutinib. He said he had a copy of a letter from NHS England’s chief executive confirming that the restrictions would be removed and that the drug would be available to NHS patients in England as per NICE’s guidelines.
I began treatment with ibrutinib in September 2018, and whilst I had some fairly mild side effects such as bone pain, within 11 days the majority of my symptoms had gone. Still, it hasn’t been plain sailing. I had to stop the medication for surgery on my back, then stop again when I restarted methatrexate for my psoriatic arthritis as I became very ill and required a CT scan, brain scan and bone marrow biopsy.
The positive outcome from the scans was that the cancer in my bone marrow has reduced from 50% to 30%, and the CT shows the largest lymph nodes have significantly shrunk, as well as the spleen.
Despite all this I still feel generally unwell and have just been diagnosed with type II diabetes.
What have you been told about your prognosis?
The only prognosis I have been given was in 2010, just prior to FCR, and I was given five years without treatment.
What treatment have you received?
FCR: 3.8 years remission. Intravenous (IV) steroid to no effect, oral steroid which reduced fatigue, IV antibiotics which reduced infection and pneumonia many, many times, and finally ibrutinib, which has reduced the cancer.
What does a typical day living with leukaemia look like?
I have a complicated medical history as I broke my back during a rescue, which left me permanently disabled and in pain. I also have severe psoriatic arthritis and as I mentioned, these both give you fatigue. In addition, the CLL makes the fatigue chronic. I feel generally unwell all the time and I suffer from chronic headaches. Life’s quite tough on not just me, but also my wife Sue.
What would you say is the greatest challenge of living with a blood cancer?
Staying positive.
Are you satisfied with the medical/NHS care you have received?
Totally satisfied. I am certain that I would not be here without the care and support I have received.
What advice would you give to someone newly diagnosed?
CLL is a journey, not a death sentence. Learn about it and how you can overcome the challenges. Communicate with your peers through respected organisations such as CLLSA or Leukaemia Care.
But most of all: Don’t give up.
Have you ever taken part in any clinical trials, and if not, would you consider it?
I have not, but I would definitely consider it.
Do you think the information available to the public on leukaemia is adequate?
There is far more now than when I was diagnosed in 2007!
What is your greatest hope or fear for the future?
To enjoy my new extension and caravan for a few more years. I’m not particularly fearful of the future, whatever it brings.
