Tagrisso with uncommon EGFR mutations

[Drew]

Hi everyone

I’ve recently posted on here in the general forum regarding my mom’s recent diagnosis of stage 4 lung cancer alongside her rheumatoid arthritis (who the oncologist is suspicious caused the cancer, or more specifically her treatment for her RA).  Her molecular results have finally arrived and we have a treatment plan:

she tested at 40% for PDL1

her molecular results showed mutations on both exon 18 and exon 20, of course both of which are considered uncommon.  My mom is currently experiencing what we believe is gastritis most likely unrelated to her cancer (showed up as inflammation on her pet scan and her stomach symptoms are literally the only symptoms she’s been having and what triggered us down this journey).  Because of her gastritis the oncologist has decided to start her on Tagrisso as it has the least side affects compared to Gefitinib.  
 

does anyone have any experience with tagrisso on uncommon mutations?  Oncologist said she has used it on uncommon mutations in the past and has seen success but usually on a shorter duration compared to when used on common mutations. Any insight here? Positive experiences? 

[SMS]

With PD-L1 activity 40%, I would think she would be a candidate for immunotheray (ie. Keytruda) if/when or after Tagrisso stops working. 

[bibi bibi]

I am wondering how the patient with exon 18 and exon 20 is doing. It’s almost a year since Drew posted. I also have 18 and 20 and we are quite unique. I declined Tagrisso to use it if I have recurrence. Also the recent ASCO conference information was presented that patients with EGFR mutations do not respond to immunotherapies, so based on that things like Keytruda are off the table. Anyone else 18 and 20?