I was diagnosed with NSCLC in Nov 2014, Stage 3b. Diagnosis was made from subcarinal node tissue, the one lung mass in the lower left bass could not be reached by bronchoscope.
My treatment was 30 sessions radiotherapy with concurrent Carboplaten and doxitaxol, finishing mid Jan’15. Progression in May’15 and 4 cycles of Carboplaten and pemetrexted followed by Pemetrexted (Alimta) maintenance. Progression in late Dec’15. Lung biopsy of new growth was positive for ALK.
Then I moved to targeted therapy. Crizotinib 10ths a small tumour remained in my lung during this time. Progression with brain Mets and started Ceritinib in in Dec’16. This gave me NED in the lung/body and 50% reduction on the brain. Progression in the brain March’18 and started Alectinib. Completed brain response in both brain and body until recent scans in Sept’19. Single new lung mass in the LL base, in a different location to my previous mass. MRI clear.
PET scan showed as cancerous and lung biopsy followed and tissue samples obtained. We do not have NGS in Australia, testing done showed samples no longer ALK+. Only information I have is that it is poorly differentiated cells.
The plan is too stayed on Alectinib and have SBRT to the lesion.
I know that ALK can change by mutation or in about 50% of cases on activation of alternative downstream signalling pathways. I have been looking for information regarding why I no longer test positive for ALK.
Does this happen with the change of signalling pathways, or do I have another new type of lung cancer?
Thank you in advance. Anyone else who has lost their ALK status?