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 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).

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.

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.

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.

“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/