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Can anyone please share any positive or success stories of stage 4 EGFR exon 19?


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My beloved mom just got diagnosed with this mutation, stage 4 and we are devastated. 

I am so angry. I just had my first baby almost a year ago and feel so robbed. She has extensive Mets and is not feeling great lately. They are going to start her on tagrisso very soon and I’m hopeful that she can at least start feeling better. 

Thank you in advance and I’m so sorry for each and every one of you going through this. Your stories give me strength and hope. 💖


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Hi, I am sorry your mom has LC, but try to think that she is "lucky" (if one can ever use such a word with Cancer!) that her mutation is targetable. Tagrisso is for the most part a great drug that works well and has a decent side effects profile. I have the same mutation and take Tagrisso as an adjuvant following surgery. I was not stage 4 but we have a number of forum members thriving despite a stage 4 including mets diagnosis, I am sure some of them will reach out to you.

I totally get the 'feeling robbed' sentiment. I have a grade 1 kid and when first diagnosed I was full of grief and fury, particularly that radiology missed the chance to catch my tumour 4 whole years prior on a clear scan that showed it. It does not help that everyone around us is just living the good life at my age, so the feeling sorry for myself was crushing. Time heals that fury, I am still sometimes very sad and occasionally still angry about all this LC mayhem but accepted that life if inherently unfair and I try to focus on the good things only. I was 49 when diagnosed but see much younger patients here in their 30s or even 20s. Life just sucks sometimes and one has to deal with the bad luck. That 'someone can always have it worse' perspective helps to get on a handle on your own tragedies and appreciate what you have, even if very imperfect.

Even stage 4 LC is not a death sentence anymore with great new medications and so many treatments being rolled out quickly. Stay optimistic but ensure your mom is getting top care, including asking about plans B and C in case Tagrisso does not work as expected. Be prepared but stay positive, Tagrisso can work wonderfully in many people.

Wishing your mom the best of outcomes! I am sure being a grandma will give her so much will to live and get better.

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