Carolyn - ALK Positive Survivor.
Date of diagnosis 18th December 2012
Short synopsis of me. Diagnosed 18th December 2012. no symptoms. Found ALK+ in the following
January. Treatment :- Chemo of Cisplatin/Pemetrexed for 6 cycles, good response so maintenance Pemetrexed for 4 cycles until kidneys protested too much. 14 months watch and wait/ no treatment. September 2014 Crizotinib. Failed after 10 months, Ceritinib (compassionate use) for 27 months. Brain mets found. Lorlatinib (compassionate use) Been on Lorlatinib 1 year. All still stable, brain mets can't be seen. Only small primary, left lower lobe is visible.
Sally - ALK Positive Survivor.
Date of diagnosis November 2013
My story in relation to being ALK Positive started in November 2013 when I started to lose the sight in my right eye. I went to a local optician, who referred me to the Eye Hospital on the same day and I was told that I had a tumour behind my eye. A biopsy was taken from my eye, which showed that the primary tumour was in my lung. A further biopsy showed that I was ALK Positive.
The last 5 years has been a journey which has had its up and downs. Initially I was treated with chemotherapy which was the first line treatment then. Since April 2015 I have been on crizotinib. I look forward to the next 5 years.
The UK ALK group meetings provide a great opportunity to meet people who are ALK positive and their families/ carers.
Kay - ALK Positive Survivor.
Date of diagnosis May 2016
I was diagnosed with ALK positive NSCLC in May 2016 aged 17. I am currently on crizotinib and under treatment at Weston Park in Sheffield, where I am in my second year at Sheffield Hallam University studying adult nursing.