Being part of the FLAIR trial has been an amazing opportunity

My name is James, and I’ve been living with a type of blood cancer called chronic lymphocytic leukaemia (CLL) for 5 years now. It all started when I noticed that the glands in my neck were swollen and when the swelling didn’t go down, I went to my GP who sent me for blood tests. They came back and confirmed that I had CLL.

CLL is a type of blood cancer that affects your white blood cells known as lymphocytes. While our bodies need lymphocytes to help fight infection, having CLL means my body makes lymphocytes that don’t work properly and grow too fast. This means I'm more at risk from infections.

As this type of blood cancer develops slowly over many years, I didn’t need treatment straight away, I was on watch and wait. This means I was monitored with regular check-ups and blood tests. When I was reassessed, I was fortunate to be given the opportunity to join a clinical trial at Royal Liverpool University Hospital (Clatterbridge Cancer Care Centre).

The FLAIR trial team are testing a drug already used to treat my type of blood cancer alongside other drugs to see if this is more effective at destroying cancer cells. I was keen on taking part in this trial as two of the trial arms had oral drug treatment. For me this was a much better option compared to intravenous chemotherapy as I now take drugs at home and visit hospital every six months for blood tests and consultation. This has made such a difference to my quality of life as it allows me to carry on living my life more or less as normal.

The FLAIR team have been wonderful, caring for me throughout my treatment. I’m now roughly halfway through the trial, with three more years to go. I have been lucky in that I have had manageable side effects and a good response to the treatment, as I know other patients have had a much tougher time. CLL is a chronic condition, which means I’ll be living with it throughout my life, so I am already thinking about what happens three years down the line.

Being part of a trial has been an amazing opportunity as it has allowed me to learn so much. I’ve seen how drugs can be targeted based on specific vulnerabilities in cancer cells and I’ve seen first-hand how quickly research is developing possible new treatments based on this, which is really exciting.

I was delighted to hear about the new research projects that Blood Cancer UK are funding, especially the project being run by Professor Chris Pepper at the University of Sussex. His research hopes to understand the specific features that cause blood cancer cells to grow out of control and why some cells aren’t destroyed by current treatments. From this he hopes to identify the best ways to treat my type of blood cancer.

Almost all people with CLL will need several rounds of treatment as the disease at the moment can be treated but not cured, and so the prospect of a more personalised approach to treatment is really exciting and makes complete sense, not just for first line treatment but also subsequent rounds of treatment or as and when treatment is needed.

It has the potential to ease some of the pretty horrible side effects and improve the effectiveness of drugs to combat the cancer. Ultimately, this will give best possible outcomes for everyone, something that all of us with blood cancer want.

Last year as I was feeling well, I was motivated to give something back to the community and take on my own fundraising challenge. I decided to sail 160 miles across the Irish sea over 3 days from Wirral in England to Carrickfergus in Northern Ireland (via the Isle of Man) on an 18-foot open catamaran with my son. The first day was very tough physically with strong winds and waves but the other two days were much more mentally challenging as the wind was very light and we made very slow progress. We stayed strong and dug deep and made it to Northern Ireland 3 days later, raising over £14,000 for Blood Cancer UK.

Without our fundraising efforts and the generous donations from the community, no matter how big or small, Blood Cancer UK wouldn’t be able to fund these incredible research projects that are changing lives for the better. We are one community, united with one aim, to get to the day where no lives are lost to blood cancer.

You can influence the research projects we fund by joining our Patient Voice Grant Advisory Network - check out how you can get involved here.