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My only option was all that I needed

29th Sep 2020 - Johanna Greenway

Johanna was told that she had only one treatment option available to her – to take part in our clinical trial. Thanks to this, Johanna was able to control her leukaemia and spend more valuable time with her family.

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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.

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. In 2011 my ear infections were getting more frequent. In 2011, I started having regular infusions of Privigen every four weeks, to help strengthen my immune system.

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 wanted to avoid chemotherapy. I had breast cancer when I was 36 years old, so I knew what chemotherapy was like, and I was keen to avoid it.

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.

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. He was successful in his application and I didn’t hesitate in signing up for it.

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 is part of our Trials Acceleration Programme. We launched this programme to deliver better treatments for people with blood cancer to the NHS faster. Advances in blood cancer research mean there are many potential treatments waiting to be tested, but there is a bottleneck when it comes to getting them into clinical trials.

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 – I have severe muscle aches in my legs, I can’t walk very far, and I suffer very badly with fatigue. My hair is quite thin, and my nails are very weak. But I can cope with them, I feel 100% better. 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. That was amazing!

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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

I’ve organised a few events to raise money for Blood Cancer UK. For me, it’s important to raise funds for the charity 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.

I’ve organised a concert with a Welsh choir that raised £1,400, as well as a sparkling afternoon tea with family and friends, which raised £1,500. I’ve also done lots of bucket collections in my local area. My son is also an enthusiastic fundraiser for the charity.

He’s a keen walker, and for the past three years, has completed a 100k walking challenge in the Cotswolds and Jurassic Coast. Altogether, he’s raised over £12,500. This year, he was meant to complete the Peak District Challenge, but it was cancelled due to COVID-19. That didn’t stop him though! He organised his own 100k walk around Bristol. It was tough, as he did it on his own, but he managed to complete it in just under 24 hours. I’m so proud of him!

Bloodwise fundraisers in fancy dress

Fundraise your way

If you're thinking of fundraising by holding an event, we have the resources and advice you need to make a success of it.

Go to our fundraising section

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