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?
Reply # - November 16, 2019, 07:42 AM
Welcome to Grace. I'm very sorry about your cancer and hope your new treatment plan works well.
It appears that cancer will change to work around the inhibitors put in its path allowing new growth where it was once blocked. When this happens in one or two places it's possible to stop that new growth with focal radiation or sometimes surgery. This allows the targeted therapy to continue to work in the rest of the body while stopping the new growth that's achieved the workaround.
Grace is having its special program today in San Francisco that is also going to play live online. It is free. There will be several lung cancer specialists discussing Controversies in Managing NSCLC - Connecting Patients to the Experts.
You will be able to ask questions online. So this is really very timely on your part! It starts 8:30 pacific. I believe you access via youtube. I haven't even looked but I'll be there online.
Good luck Linda,
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.