EGFR mutations on exon 20 and exon 21

[Ssbastos]

Hello,

I'm 42M, and I've just been diagnosed with stage 4 lung cancer.

My PD-L1 is between 30 and 40%, and I have EGFR S768I (exon 20) and EGFR L858R (exon 21) mutations.

Is it normal to have more than one EGFR mutation? I'm starting treatment on osimertinib, how effective is this treatment?

[Cardinal1111]

Worked great for my wife for about 2 yrs no side effects she has now moved on to chemo

[Ssbastos in reply to Cardinal1111]

I’m sorry she’s on chemo now. My oncologist told me the exon 20 mutation is resistive to targeted treatment, but not the exon 21 mutation. So who knows if two years on targeted treatment for me is wishful thinking.

[Cardinal1111 in reply to Ssbastos]

She was on tarcivo for about 2 years it had some tough side effects but it worked pretty good so we are into year 5 of this journey

Which is much longer that the first opinion we received which was a horrible ordeal

Our second opinion and dr has been a blessing

Keep looking up and ask lots of questions

[Ssbastos in reply to Cardinal1111]

Thanks for sharing.

You’re right, the best way to beat this is to be well informed.

[Denzie Moderator Volunteer]

A cancer can have dozens of mutations and having 2 in the EGFR is not unheard of. Osimertanib (Tagrisso) is standard of care in this instance because it was put through clinical trials with very rigid standards. The decision to make it standard of care is evidence based. It has proven to contribute to longer progression free survival with a better quality of life.

The go2 Foundation, has partnered with a patient led group to drive research into the next generation of TKI inhibitors. The patients have an active Facebook Page called the EGFR Resisters. You’ll find lots of good information about side effects management there. I hope you’ll join us there but please keep us updated here as your experiences will help others.

[Ssbastos in reply to Denzie]

Thanks, I’ve found the Facebook group, it seems promising.

[Denzie Moderator Volunteer in reply to Ssbastos]

Many of the patients there know more about the EGFR mutations than do many general oncologists. We’ve been grateful to Bonnie Addario and the support her foundations have given us.

[KimGO2 Partner]

Welcome to healthunlocked Ssbastos. We would like to personally speak with you regarding your specific type of lung cancer. Reach us at 1-800-298-2436 or if you would prefer email, our address is- [e-mail]. We look forward to hearing from you soon. In the meantime, I agree with Denzie that the EGFR resisters group will be good to connect with online. Warmly, Kim

[MFH_Advocate]

Welcome and wishing you all the best for your treatment. Have you thought about a clinical trial, eg, I believe poziotinib is being studied for some types of exon 20 mutations. biospace.com/article/releas...

[Ssbastos in reply to MFH_Advocate]

Hello, thank you for the information. I’m living in Europe though, how can I find if there are clinical trials near me?