Graeme’s update: skiing again after 13 years with EGFR+ exon 20 lung cancer
Graeme first shared his story with us in 2025. He’s from Kilbarchan in Renfrewshire, he was diagnosed with lung cancer in 2013 at the age of 42, and it became stage 4 EGFR+ in 2017. Since then he’s had surgery, more than 80 cycles of chemotherapy and several targeted treatments, and he volunteers and fundraises for Beatson Cancer Charity.
He says it’s been a challenging year, but with more highs than lows.
One of the biggest highs was going skiing for the first time in more than 30 years. He met up with a friend in Holland and they drove to Austria for a week on the slopes. He broke a rib, but kept skiing all week anyway.
“I was so amazed that I could still achieve things like skiing. I enjoyed it so much that week I forgot I had cancer!”
He’s already saving up to go again. Closer to home, his eldest son has bought his first home with his partner, and Graeme has been helping with the DIY, even if he doesn’t have the stamina he used to.
The hardest news came in May. Graeme had been taking mobocertinib, a targeted treatment for people with an EGFR exon 20 mutation, since October 2022. The drug was withdrawn worldwide in 2023 after a follow-up trial didn’t confirm its benefit, but the manufacturer, Takeda, carried on supplying people who were already taking it. In May this year, they told patients that supply would stop. Graeme’s last supply ran out at the end of September.
“It just seems cruel that there is a treatment that works for me (and others) but the manufacturer has decided to stop making it.”
“I was so amazed that I could still achieve things like skiing. I enjoyed it so much that week I forgot I had cancer!”
Graeme and his oncology team are now looking at what he can move on to. The only NHS treatment for exon 20 lung cancer is designed for people starting their first treatment, and this would be Graeme’s sixth. He’d like to try to get onto one of the newer targeted drugs being tested in clinical trials. On top of that, he’s recently been told that a neuroendocrine cancer he’s also being treated for appears to be progressing.
“I have every faith in the oncology team looking after me, combined with the support of the cancer community. I’m determined to soon be back on track with a new treatment that works for me.”
As soon as he heard his treatment was ending, Graeme took out annual travel insurance and went to Corfu with his wife before his medication ran out. And after years of thinking about it, they’ve bought a campervan, so they can keep going away with the family and the dog, whatever happens next.
“It’s important to continue to try and follow your dreams and adapt to living with cancer as a chronic illness.”
The modern classic sports car he was restoring last year is still in the garage. He’s hoping to have it on the road next year.
