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After having a bad reaction to a drug that I was taking for a restless leg, my GP suggested that I have a blood test. When the results came back, she urgently referred me to a haematologist. I was diagnosed with chronic lymphocytic leukemia (CLL) in 2009, when I was 67 years old.

I was incredibly shocked to have been diagnosed with CLL, as I didn’t think I had any symptoms. Although looking back, I did have a lot of ongoing chest and ear infections.

A young graduate wearing a gown, standing with family at her graduation outdoors.

Experience after diagnosis

It was decided that I wouldn’t have treatment for CLL because it wasn’t beneficial to start early, but that I would continue to be observed with regular hospital check-ups.

A few years later in 2013, I developed a severe cough and chest infection that wouldn’t go away. I was given various medication, but nothing helped. I was admitted to hospital for three weeks. I had pneumonia and developed sepsis. When I was able to go home, I was still so poorly. I had no energy and felt weak.

I had only one option…

My healthcare team said they couldn’t do anything more for me. In 2014, they transferred me to another consultant, Professor Fegan. He knew I needed treatment for CLL, but I was too unwell to be able to cope with the demands of chemotherapy.

However, he was working with Blood Cancer UK on a new clinical trial that I may be able to take part in.

This clinical trial was my only treatment option.

Making a decision

Professor Fegan explained that he would apply for me to have a place on the IciCLLe study. It was only open to 40 patients across the UK. He assured me that if he were in my position, he’d take part. I didn’t hesitate in signing up.

I'm much stronger now

Since 2014, I’ve been taking the drug, ibrutinib, three times a day as part of the IciCLLe study. The medication started to work quickly. My spleen was enlarged and that started to shrink quite quickly. I began to feel so much better. It was a miracle!

Our Trials Acceleration Programme

The IciCLLe study was part of our Trials Acceleration Programme, which delivered better treatments for people with blood cancer to the NHS faster.

For patients to benefit as quickly as possible from these new treatments, they need to be rapidly assessed in early-phase clinical trials.

It doesn’t cure the CLL but controls it. There are side effects – but I can cope with them. I can’t do all the things I used to, but I'm thankful for what I can do.

If it wasn’t for the clinical trial, I may not be here today

My health would have deteriorated very quickly. The more time I’ve been able to spend with my family has been amazing. I’ve celebrated my golden wedding anniversary and travelled across South Africa and Canada. The icing on the cake was attending my eldest granddaughter’s graduation.

Being part of the clinical trial has given me extra time and memories with my husband, two children and five grandchildren. I’m so grateful.

Raising money for Blood Cancer UK

For me, it’s important to raise funds for Blood Cancer UK because they have helped save my life. I don’t think I would be here had it not been for their research. I want them to be able to continue their life saving work so they can help other people.

Johanna, who is affected by blood cancer, sat with friends in front of a Bloodwise banner.
Rachel is sat looking at a laptop screen. She has a headset on and is speaking to someone on the phone.

Clinical trials navigation service

If you're ready to talk about trials, a specialist clinical trials nurse can help. They can explain information you've received, and answer questions, or search for relevant UK trials, providing a plain-language summary to discuss with your doctor.

Book a call