Yorkshire mother becomes one of first patients in UK to receive life changing drug for rare cancer

A woman from Yorkshire is one of the first in the country to take a new life-changing drug, after being diagnosed with a rare cancer last year.
Megan MurphyMegan Murphy
Megan Murphy

Megan Murphy, who lives in Bramley, was diagnosed with stage three cholangiocarcinoma, an aggressive form of bile duct cancer in August 2020.

The 46-year-old mother-of-three says she says she felt an impact just days after taking pemigatinib – a drug which is newly available for routine use.

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Megan saw her GP in March 2020 after experiencing pain in her stomach, back and hip – which she thought could be a hernia.

Megan’s GP referred her to a consultant at Western Park Hospital in Sheffield.

Scans showed a large tumour in her bile ducts, as well as tumours in her liver and in her lymph nodes.

On August 4 2020, Megan was diagnosed with Stage 3, inoperable bile duct cancer, also known as cholangiocarcinoma (CCA).

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After reciving the diagnosis, Megan was left feeling “fearful.”

“It’s a very shocking, upsetting and epressing experience,” Megan said. “In those first couple of weeks I was very confused – I’d not heard of this cancer before and didn’t know what I was dealing with.”

In September, she began chemotherapy treatment which started to shrink the main tumour in her liver, which was 13 and a half cm, but the the cancer had spread to her lungs.

Megan was left feeling weak and unable to get around – and another scan showed new tumours in her liver, which were not there a month before.

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After being prescribed breakthrough drug pemigatinib in April 2021, Megan said she felt its effects “almost immediately”.

“I was on orphine and co-codamel, and doubled over in pain. After a couple of days I was off painkillers and standing upright.”

“I want to be here for my children – they are my main driving force. I’m not a statistic, I refuse to be told how much time I have left. I’m able to get out and exercise, and there’s no reason to think I won’t be here next year. I didn’t think I’d be here now, feeling as well as I do.”

A recent scan shows that all tumours have been reduced since starting the drug – with some in Megan’s lungs gone completley.

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She urged everyone with symptoms to have them checked out as soon as possible.

“I’d never heard of this cancer before – it’s such a rare and aggressive cancer. You feel fearful and confused," she added.

“I asked the consultant, Professor Wadsley, if I could start straight on the drug and not do a second round of chemo. I don’t know where I’d be right now if I hadn’t.”

After looking to connect with others with cholangiocarcinoma online, Megan found that a lot of the negative stories affected her outlook, and started a blog about her experience, in the hopes of helping others.

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“I knew the cancer mainly affects older people, so I felt there was something even more wrong with me. I found more younger people with the cacer, and it took some of the fear away. When I was first diagnosed I thought I can’t accept that I’m not going to be around.”

Megan started her blog https://beatingbileductcancer.co.uk, as a way to connect with others in a positive way.

Megan urges anyone diagnosed with cholangiocarcinoma to ask thei consultant about molecular profiling, the testing to see if pemigatinib is suitable for them.

“It can make a difference,” she added. “Hopefully this will open the door for more testing."

For more information, see: https://ammf.org.uk/

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