My Cancer Support – EGFR Exon-20 and HER2
As a volunteer coordinator for ICAN (International Cancer Advocacy Network) in Australia and New Zealand for patients with EGFR Exon-20 and HER2, I’m here to help bring patients together and link them to support.
Discussing symptom management, treatment options, and how you feel, can help.
My brother had EGFR Exon-20, and with the support of ICAN we managed to buy him more time with his family, and manage some of his symptoms.
The mutation analysis of his tumour was critical to finding out which treatments had the best chance of helping. His cancer, in levels of analysis, was lung cancer – adenocarcinoma – EGFR positive – exon-20 – D770_N771 insSVD.
For anyone who wants to become part of this group, which aims to “meet” on video calls monthly, please email cherie@my.co.nz and belangeh@hotmail.com
For exon-20, you can also start with https://exon20group.org/ for information, and a link to fill in the new patient form.
More Information
ICAN, International Cancer Advocacy Network, is a small organization with a national and international reach. ICAN’s goal is to extend life with the highest achievable quality of life. ICAN’s small staff and nearly 100 volunteers provide numerous free services, and connect patients to second opinions and appropriate clinical trials, molecular profiling, and compassionate use.
In addition, ICAN now leads five rare cancer groups:
- Biomarker Collaborative (https://biomarkercollaborative.org) is a consortium of biomarker groups and general cancer organizations emphasizing comprehensive biomarker testing and clinical trials.
- Exon 20 Group (https://exon20group.org) is an international coalition and multi-stakeholder organization dedicated to better managing and then curing cancers caused by two gene mutations each found in more than 25 cancers: EGFR exon 20 and HER2 exon 20 insertions.
- MET Crusaders (https://metcrusaders.org) focus on MET gene alterations: METex14 skipping mutation / amplification / overexpression.
- NRG1 Energizers (https://nrg1energizers.org), specializes in rare NRG1 fusion positive cancers found in many solid tumors, especially lung cancer and pancreatic cancer.
- PD-L1 Amplifieds (https://pdl1amplifieds.org), focus on “PD-L1 Amplification” a diagnosis found only by next-generation sequencing (NGS)/comprehensive biomarker testing. If found, PD-L1-amplified patients may be candidates for immune checkpoint blockade therapy.