Did you know that anyone with lungs can get lung cancer?

Even healthy, active people who never smoked. As I learned in August 2021.

I went from being perfectly well to having a mild cough in the spring of 2021, then to being quite unwell and confined to bed by August.

In September 2021, I learned that I have ALK-positive lung cancer, which is caused by a non-hereditary mutation of the ALK (anaplastic lymphoma kinase) gene, which is present in the body as an embryo.

ALK-positive lung cancer is a rare and aggressive cancer that tends to strike younger people who never smoked. My lung cancer had already metastasised to my liver and various lymph glands – from the collar bone to below the bronchials.

I am fortunate in that while advanced ALK-positive lung cancer is not curable, it is treatable. I take a ‘targeted therapy’ – a drug that inhibits ALK-positive cancer. My cancer is responding really well to my treatment and my oncology team is about to begin radiotherapy to further 'consolidate' my treatment (ie deepen the response). However, over time, we ALK-positive cancer patients will develop resistance to our medications and/or develop further mutations – causing us to run out of lines of treatment.

Ten years ago, survival for ALK-positive lung cancer was measured in months. Today, thanks to ALK-focused medical research, survival is measured in years. But we can do better.

I am hopeful that through all our donations, we can find newer treatments and even a cure. Funds raised here will go to ALK+ International, a charity focused on increasing the life expectancy for ALK-positive cancer patients.

Much love,

Yvonne, Quentin, Joaquin and Oscar xx

Facts about ALK-positive lung cancer

(I would not be a good PR person if I didn't take this moment to educate and advocate about lung cancer.)

• Lung cancer is the leading cause of cancer death worldwide, killing more people every year than colorectal, breast and prostate cancers combined.

• In 2020 alone, there were 2.2 million new cases of lung cancer globally, and 1.8 million deaths.

• Unfortunately, lung cancer is also one of the poorest funded cancers.

• The ALK (anaplastic lymphoma kinase) gene is present in embryos. The ALK gene gets “turned off” while you’re still in the womb. If the gene is turned on again and joins with another gene, this can cause an ALK rearrangement or ALK fusion - potentially causing ALK-positive lung cancer.

• The ALK mutation was only discovered 15 years ago (in 2007) and the first ALK targeted therapy treatment was only approved in 2011.

• ALK+ lung cancer affects young people – about 50% are diagnosed before age 50 and 30% are in their 30s.

• Most ALK-positive patients have never smoked or are non-smokers. There is no known cause for ALK-positive lung cancer.

• Because there are such few symptoms, about 90% of ALK-positive lung cancer patients are diagnosed at stage IV, when the cancer has spread or metastasised to other parts of the body. It is also incurable at stage IV.

• Without treatment, half of patients with stage IV ALK-positive lung cancer would die in less than one year. With current targeted treatments, the median survival has increased to approximately 6.8 years. Researchers are working to increase those survival times with new treatments.