Living the Cancer Experience

[bibi bibi]

Hi! My name is Phyllis Scott and I was diagnosed by accident 2 years ago while applying for Thai medical insurance for a Thai long term visa. And so I received my surgery and chemo in Bangkok.

I was stage 3 nsclc and I have unique EGFR biomarkers - exon 18 and 20. Therefore there are no targeted therapies available to be. 

I live in northeastern pennsylvania and my oncologist is in Philadelphia. I advocate for more inclusive screening not based on just age and smoking history. 
 

Also, rural Pennsylvania has very limited post treatment palliative support services available through the local hospitals. And very few advocates for lung cancer awareness. So I am trying to raise awareness and end the stigma. 

[Tom Galli]

Phyllis,

Welcome here!

I was born and raised in the Commonwealth of Pennsylvania and in my day, the Northeast was indeed very rural. I don't think much has changed given the condition of treatment availability you mention in your post.

In fact, I've been to Plymouth, PA. It was once a hopping place during the hard coal or anthracite coal mining days. 

Ending the lung cancer stigma and opening the availability of screening are very worthy causes to advocate for.

Thanks for joining us and helping spread the word.

Stay the course.

Tom

[Karen_L]

Hi Phyllis, and thank you for your great work in raising awareness. 

I have compound mutations also, one of which is an Exon 20 point mutation (S768i). I've encountered one other person with this mutation.  Luckily my other is garden variety EGFR L858R, for which there are some targeted treatments. 

If you have an Exon 20 insertion, you've probably heard about this. 

Also, you may already be a part of Marcia Horn's Exon 20 Facebook group. She's amazing. (Because I have a point mutation, I don't qualify. 🤷‍♀️ ) But you might want to check it out if you haven't already.

Best,

Karen