Megan Murphy, who lives in Bramley, was diagnosed in August 2020 with stage three cholangiocarcinoma, an aggressive form of bile duct cancer.
The 46-year-old mother of three says she felt an impact just days after taking pemigatinib, a drug that is newly available for routine use.
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Megan saw her GP in March 2020 after 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 tumor in her bile duct, as well as tumors 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 being diagnosed, Megan felt “anxious.”
“It’s a very shocking, disturbing and oppressive experience,” Megan said. “In those first few weeks I was very confused — I had never heard of this cancer and didn’t know what I was dealing with.”
In September, she started chemotherapy, which caused the main tumor in her liver, which was 13 and a half cm in size, to shrink, but the cancer had spread to her lungs.
Megan felt weak and unable to make ends meet — and another scan showed new tumors in her liver, which hadn’t been there a month before.
After receiving the breakthrough drug pemigatinib in April 2021, Megan said she felt its effects “almost immediately.”
“I was on orphine and co-codamel, and folded in pain. After a few days I was off the painkillers and I was standing up straight.”
“I want to be there for my children – they are my main motivation. I’m not a statistic, I refuse to be told how much time I have left. I can go out to 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 good as I am.”
A recent scan shows that all tumors have reduced since the start of the drug – some in Megan’s lungs have completely disappeared.
She urged anyone with symptoms to get them checked out as soon as possible.
“I had never heard of this cancer – it is such a rare and aggressive cancer. You feel anxious and confused,” she added.
“I asked the consultant, Professor Wadsley, if I could start the drug right away and not have a second round of chemotherapy. I don’t know where I would be now if I hadn’t.”
After reaching out to others online with cholangiocarcinoma, Megan found that many of the negative stories affected her outlook and started a blog about her experience, hoping to help others.
“I knew that the cancer mainly affects older people, so I felt there was something more wrong with me. I found more younger people with the cancer, and it took some of the fear away. When I was first diagnosed, I thought I can’t accept that I won’t be here anymore.”
Megan urges anyone diagnosed with cholangiocarcinoma to ask their counselor about molecular profiling, testing to see if pemigatinib is right for them.
“It can make a difference,” she added. “Hopefully this opens the door for more testing.”