Carl

Carl talks about his diagnosis of CLL, four years on active monitoring and treatment on a clinical trial

Carl

In 2011, I had a lump on the left hand side of my neck. I didn’t think anything about it, but after a month or two decided I should see my GP, just in case.

Although my doctor wasn’t unduly worried, he arranged for blood tests. These came back fine, but further tests were arranged with the ear, nose and throat (ENT) department, including a syringe biopsy.

As my glands were raised, the ENT consultant arranged a slot in surgery the next day. Alarm bells were ringing.

The day before I was due to go on holiday I was told I had non-Hodgkin lymphoma. The nurses urged me to stick with my plans and go away on the holiday, but in reality I shouldn’t have gone. I spent the whole week just feeling anxious.   

When I got home I was transferred to haematology where it was explained that I had chronic lymphocytic leukaemia (CLL).  My diagnosis had been discussed at a multidisciplinary team (MDT) meeting and it had been agreed that the best course of action for me would be active monitoring or ‘watch and wait’.

I was 40 at the time and had so many questions. ‘How long do I have to live?’ ‘How will things develop?’  I wanted to run out of the hospital room and for it all to go away. 

In fact, lymphoma wasn’t a stranger to me as my father had been diagnosed with non-Hodgkin lymphoma. But I don’t know whether that made it any better. All I did know was that my father hadn’t wanted to know much about his condition whereas I wanted to know everything I could about CLL. That’s where Lymphoma Action came in.

I had been told that I may be on active monitoring for a couple of years, so decided the best way for me to cope was to keep things as normal as possible. Although I told management at work, I asked them to keep it private as I didn’t want it to be general knowledge. I just told the people who needed to know and my close family and friends.

Over the next six months I could feel the lump getting bigger and could feel more lumps under my arms and in my groin. I found this really upsetting and counselling sessions were arranged to help with the stress. It was also suggested I try out a support group where I would meet others in a similar situation. The group were so friendly that I found the experience really positive. It was also reassuring to speak with others who had been diagnosed with NHL over 20 years beforehand.

 
I was on active monitoring from August 2011 until 2015 when it was agreed that it was time to consider treatment.
Carl

I was on active monitoring from August 2011 until 2015 when it was agreed that it was time to consider treatment. 

My consultant explained that I had a couple of options. I could either have standard treatment of FCR  (chemotherapy with antibody therapy) or take part in a clinical trial called the FLAIR trial. FLAIR is a randomised trial comparing FCR with ibrutinib and rituximab.

I was pleased to be randomised onto the ibrutinib and rituximab arm. I had six months of rituximab and am due to take ibrutinib tablets three times a day for at least six years.

The treatment was very effective and it was phenomenal how much my lymph glands went down within the first two weeks. The lump in my neck had become very large, but within 12 months it wasn’t visible, although I could still feel it.

 
Having CLL, I realise how important it is to have people around me.
Carl

The trial lasts six years and so far I have been on it for nearly three. I will continue to take three ibrutinib tablets daily for  the remaining three years as long as it continues to be effective or until the CLL is no longer detected in my blood tests.

I have few side effects. I feel much more tired, but I had been expecting this. I get far more infections, so take antibiotics daily to avoid chest infections. I also notice that my hands and feet feel frozen for about four or five days after having rituximab.

I had worked for the same organization for 30 years and chose to take early retirement. I don’t know whether it is because of the CLL, or whether I may have felt this way anyway, but I have plans to travel and want to have time to spend in the gym, which has really helped with my fatigue and my health generally.