Can someone help my understand when im... - Lung Cancer Support

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Can someone help my understand when immunotherapy is an option?

Tlauren profile image
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Hi, my mom was diagnosed with Stage 4 non small cell lung cancer with Mets to bones in Feb 2019. She has EGFR mutation 18. The doctor mentioned possibly trying immunotherapy as she is having progression to more bones after two TKI and chemo. She does not have PDL1 mutation and her last blood biopsy showed no mutations. She just had another drawn yesterday as we are waiting for the results. Has anyone done immunotherapy without PDL1 and the doctor mentioned something about it working better for people w history of smoking or non smokers I can’t remember. Any insight on immunotherapy would be great!

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Tlauren
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JanetteR57 profile image
JanetteR57

I'm not sure which country you're in as availability/eligibility criteria differ. Usually in the UK only certain people are eligible with a specific % of PDL1 as this was the group on who the treatment was researched and found to have a benefit and where the 'evidence base' is. However due to the pandemic, in the UK others have been access to immunotherapy who wouldn't usually have been clinically eligible (i.e. their PDL1 score does not fit the usual criteria) so we have many people now benefitting or experiencing immunotherapy. some are experiencing side effects (as do the original cohort) and as with usually eligible patients, some respond to it and others don't. As far as I'm aware from the various sites I receive latest research information from, there hasn't been data captured in volume sufficient to prove an evidence base from these patients yet to know one way or another whether it works better than usual care but the decision was taken by clinical experts to change the pathway due to the increased risk of lung cancer patients having to visit hospital much more frequently if they had chemotherapy and therefore potentially exposed to more covid 19. the timing of immunotherapy treatments has also been altered to double the dose and have every 6 weeks rather than 3 weeks for some agents. I'm sure some on here will be able to share their experiences - good and bad.

Denzie profile image
DenzieModeratorVolunteer

I don’t know what happened to my original answer. Sorry. I do know that there have been some people whose cancer responded to a man immunotherapy after a test showed PDL-1 lower than one. I’ll try to find the study and get back.

Part of the decision to try the immunotherapy May be based on the fact that the cancer has developed new mutations to get around the TKIs and chemo. The more mutations a tumor has the better the response to immunotherapy.

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