I was diagnosed on 18th December 2012, with ALK+ status being
confirmed in the January. I had no symptoms.
With regards to treatment, I had 6 cycles of Cisplatin/Pemetrexed chemotherapy. There was a good response, so I received maintenance Pemetrexed for 4 cycles, until my kidneys protested too much. I spent 14 months watching and waiing with no treatment. In September 2014, I started Crizotinib, which failed after 10 months. I then started Ceritinib (compassionate use) for 27 months when brain mets were found. I started Lorlatinib (compassionate use), which I have been on for 1 year. Been on Lorlatinib 1 year. All still stable and brain mets can't be seen. Only small primary, left lower lobe is visible.
After living life to the full for nearly 7 years following diagnosis, Carolyn died peacefully on 4th September 2019.