Co-Founder of CLL Ireland and CLL Patient Advocate
Communications Manager, CLL Ireland
It was 2011 and Jan Rynne, the busy mum of four, was contemplating returning to work when she developed a ‘red eye’.
Jan revealed: “I’d been back and forth to eye clinics and eventually went to ophthalmologist who diagnosed episcleritis. He said he could fix it but something underlying was causing it”.
The news that her eye problems was actually caused by failings in with her immune system was a huge shock.
“I did have a lot of infections, and I did tell my GP I was tired a lot – but I had four young kids so tiredness was expected.
Eventually the results from a simple blood test showed I had something called Chronic Lymphocytic Leukaemia (CLL)” – and it was blood cancer.
“I’d the ‘Big C’ and I was terrified”
CLL shares many symptoms with other conditions and can often be overlooked, especially in younger patients.
Jan, from Drumcondra in Dublin, recalls that in the immediate aftermath of her diagnosis, she felt her prospects were poor:
“Online articles were saying that life expectancy with CLL was just five years – I was 39 years old and my youngest was only three.”
There was very little information available on CLL, and what she did find was out of date or was written for someone much older.
“I was scared all the time. My husband and I knew that our only hope was to educate and advocate for ourselves, so we got in touch with online support groups began finding out new information from them.”
Jan was one of the lucky CLL patients
Jan’s tenacious husband, Michael, was instrumental in helping her find an Irish haematologist Professor Patrick Thornton one of Ireland’s few CLL specialists. From the first appointment they found him forward thinking.
“Prof. Thornton had all the latest information about new, more effective treatments – including non-chemotherapy options”.
But critically these treatments weren’t available here In Ireland. Jan was referred to see the top European consultant Professor Peter Hillmen in Leeds.
In September 2014 Jan started a clinical trial for a new drug – a non-chemotherapy novel agent.
It was almost too late…
Jan recalls:“The day I took my first capsules my bone marrow was 96% infiltrated by CLL cells. My platelets were low, I was anaemic, my spleen was swollen, and I had developed further complications”.
Incredibly within days of starting her new treatment symptoms started to improve and the lymph nodes in her neck started to shrink.
It would be six months before Jan began to feel like herself again. It was arduous but slowly things improved.
I could start to do all those things that other people had stepped in and done for us for so long.
Facing new challenges
Every day Jan has to take three capsules to keep her leukaemia at bay- and her treatment has not been without its side effects.
Jan also receives regular infusions to fight infections she is very susceptible to, and frequently requires trips to the GP and courses of antibiotics.
Jan must travel to Leeds every six months to get another supply of drugs. And Brexit is a looming worry.
“I’ve been told my care won’t be affected – but information is unclear and who knows what It will all mean. I’m comforted by the knowledge several new drugs are in trials and that newer drugs are reporting fewer or no side effects. If things change with my disease, I hope I will be able to access one such drug”.
Founding Chronic Lymphocytic Leukaemia Ireland
Jan’s improving health spurred her on to set up Chronic Lymphocytic Leukaemia Ireland, a registered charity (RCN 20158552) that aims to support others with her condition, in 2017.
CLL Ireland’s team of volunteers have ran events in Dublin, Cork and Mullingar to provide much needed information and support for CLL patients and their loved ones. They have an active social media presence and collaborated with the Irish Cancer Society and others supporting the blood cancer community in Ireland.
“Hundreds of people have benefitted from attending our information days to hear, first-hand, from CLL medical experts that there is hope!”
In mid-November CLL Ireland will be holding their next information event. Jan shares:
“We’re excited to announce that our next event will be in Galway City. Those interested in joining us should visit our website www.clli.ie and join our mailing list to get updates”.
Jan’s charity to support others with CLL: