‘I told them I want more life and they gave it’ - Norfolk woman helps pave the way for revolutionary cancer drug

Liz Johnson at her home in Fakenham. Picture: Ian Burt

Liz Johnson at her home in Fakenham. Picture: Ian Burt - Credit: Archant

When doctors told her she had just months to live, Norfolk grandmother Liz Johnson and her family were devastated.

Liz Johnson stands in grey with her family. From left to right. Paul Colman, Lily Johnson, Laura Joh

Liz Johnson stands in grey with her family. From left to right. Paul Colman, Lily Johnson, Laura Johnson, Chris Johnson, Charlie Johnson, John Johnson, Liz Johnson and Emma Colman. The four with the Marsden tee shirts are taking on the Marsden March, while the rest of the family will support them. Picture: Archant - Credit: Archant

But, after becoming one of the first people in the country to take an experimental drug for cancer treatment, the 63-year-old is still enjoying a full life two years on.

Furthermore, her miraculous results have helped give hope that the drug will become more widely available and extend the lives of 1,300 other terminally ill cancer sufferers.

Mrs Johnson, who lives in Hempton, near Fakenham, was diagnosed with thyroid cancer in 2011 and despite a series of operations and treatments at Norfolk and Norwich University Hospital, the disease spread through her body. In February 2016 she was given the devastating news that she would soon die.

Wheelchair-bound and with little hope left, she was referred to cancer charity The Royal Marsden in Sutton.

Liz Johnson and her husband John who is planning to take part in a charity walk to raise money for t

Liz Johnson and her husband John who is planning to take part in a charity walk to raise money for the Royal Marsden. Picture: Ian Burt - Credit: Archant

Mrs Johnson said: “I was told that there is this drug called lenvatinib, created by a pharmaceutical company called Eisai, but no one will fund it.

“They told me if I speak to the company directly they might let me have it. So I emailed them and I pleaded with them as a mother and grandmother, I told them that I want more life, and they let me have it.”

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Under a compassionate funding scheme, Eisai began supplying and funding lenvatinib at a cost to the company of £8,000 per month and Mrs Johnson became one of a small number of people able to have access to the drug, which had been made available in the UK despite being approved in Europe in May 2015.

Two years later Mrs Johnson has defied all expectations. She is still alive, she is no longer in a wheelchair and her tumours have shrunk by almost 50pc.

“It shrunk the tumours and it’s given me my life back,” she said.

“It will stop working eventually, I know that, but I live month to month while it is working and I enjoy what I’ve got.”

These miraculous results have paved the way toward a recommendation from the National Institute for Health and Care Excellence (NICE) that lenvatinib should be made routinely available for NHS use, potentially giving up to 1,300 cancer sufferers much longer life expectancy.

The recommendation was made on February 15 and Mirella Marlow, from NICE, said: “Treatments for these types of thyroid cancer are limited, so it is important we are able to give patients much needed access to alternatives to best supportive care at this stage of their disease.

“These drugs will give patients extra time, as well as improving their quality of life.”

The Marsden March

When Liz Johnson was given the devastating news in 2016 the Norfolk and Norwich University Hospital referred her to The Royal Marsden Cancer Charity, in Sutton, and it was there that she was told about the revolutionary drug which has given her so much more time.

Her family has been determined to say thank you to the charity and now her son, daughter and daughter in law are all preparing to take on an annual 14-mile fundraising walk, known as the Marsden March.

They will be joined by Mrs Johnson’s husband John Johnson who will take on a shorter five mile route.

“I want to do something for Marsden because we’ve had so much good from them,” said Mr Johnson. “The way they have treated Liz is top class, it really is the best.”

Their goal is to raise more than £2,000, which would go towards cancer research.

To support the family’s fundraising visit their Just Giving webpage.

In memory of a friend

The Johnson family is taking on a 14 mile walking challenge to raise money for The Royal Marsden and to honour the memory of close friend, Emmy Coates.

Mrs Coates, 31, from Hereford, passed away in June 2017 after being diagnosed with thyroid cancer.

She was diagnosed at the age of 30 but she didn’t let it stop her and her husband from taking to a tandem bike and cycling 2,000km from London to Copenhagen and then completing The Marsden March, raising more than £138,000.

Mrs Coates became good friends with Liz Johnson and left her with the memory of the words she always lived by, ‘smile, love and be kind’.

Mrs Coates’ husband, Jake Coates, continues to raise money for the charity and his wife’s story has inspired many more families to take on fundraising challenges including running marathons, long distance hikes and even a sold out concert.