In case anyone has been wondering what I've been doing lately, I've been working on this project with 3 other EGFR+ lung cancer patients.
A new patient-driven group is forming for lung cancer patients with EGFR mutations who have developed resistance to at least one EGFR targeted treatment drug. This includes patients who have become resistant to Tarceva, Iressa, Gilotrif, and Tagrisso, and patients who have been in clinical trials for experimental T790M drugs. Wherever we start from, we will be ending up in the same place: with one or more resistance mutations from an ever-growing list, and without many treatment options. We call ourselves the EGFR Resisters.
Our goals:
To build a community of patients and caregivers who share knowledge and support each other.
To securely and confidentially collect basic medical data of interest to researchers from our members.
To accelerate research into new treatments for those with resistance to EGFR targeted therapies.
To help people in our community find clinical trials.
To improve outcomes for patients who develop resistance to EGFR targeted therapies.
If you wish to join, please complete this form: goo.gl/forms/SpiSNSXOi62qqMQP2. We have set up a closed group on Facebook as our primary form of communication with each other at this time. You can find us by searching on “EGFR Resisters Lung Cancer Patient Group". If you are not on Facebook but are still interested in joining this group, please send me a private message on this site.
Do not hesitate to contact me for more information!
To be, or not to be...NED. That is the question -William Shakespeare and me 😂
A Milestone that Shouldn't Be!
