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A patient-driven community dedicated to improving the outcomes for those with EGFR positive lung cancer.

Happy Holidays to all our members. We wish you all the best for 2023!

 

EGFR Resisters Updates

Lung Cancer Research Foundation (LCRF) and EGFR Resisters Announce Research Awards


LCRF and EGFR Resisters

The EGFR Resisters are thrilled to announce the THREE 2022 grant recipients of our research award partnership with Lung Cancer Research Foundation. Each project will receive $150,000 for 2 years, for a total of $450,000 of funding.

Please read the press release below for more details about the projects selected. Thank you so much to our membership for making these awards possible!!!!
Read Press Release here

Video Summary Recap: 2022 EGFR Resisters Research Summit


EGFR Resisters

We held our 4th Annual 2022 EGFR Resisters Research Summit on November 17-18, 2022 in Chicago. Please watch this video to learn more about the summit and the lung cancer research presented by the Young Investigators who participated.
Watch summary recap here

Correction: Dr. Joshua Reuss' Research Project


 LUNGevity

​In our November newsletter, we erroneously identified Dr. Joshua Reuss as having a new research project funded by the EGFR Resisters. While Dr. Reuss was a participant in the 2021 EGFR Resisters Research Summit and we are excited that his research has been funded by LUNGevity for a Career Development Award, the EGFR Resisters are not part of the funding for this project.
Advocacy

Thank You to all who Participated in Lung Cancer Awareness Month

From EGFR Resisters

For the last few years, the Resisters have been very active during Lung Cancer Awareness Month (LCAM) and this year was no different. Many of our members participated and as a result, we were able to post a lung cancer message every day of November with a photo of one of our members on our Twitter and Instagram accounts. A big thanks to all who participated!

Are You on a Clinical Trial? We Need You!

From EGFR Resisters

If you are currently participating or have previously participated on a clinical trial(s) and are willing to share your experiences with those who are contemplating enrolling in a clinical trial, please email the EGFR Resisters at EGFRResisters@gmail.com with your full name, email address, phone number, clinical trial(s) you have enrolled in (please include the NCT number) and let us know which way you would like to be contacted

Our intent is to build a database of people on clinical trials. There are many of us who are facing progression and want to contact those who have experience with trials to find out about success, failure, side effects, etc.

Take Action: Increase Funding to $60M in FY23 Defense Appropriations for Lung Cancer Research!

Through the Congressional Lung Cancer Caucus Chair, Representative Brendan Boyle (D-PA), GO2 Foundation for Lung Cancer submitted an appropriations request of $60M in the FY23 Defense Appropriations Bill for the Lung Cancer Research Program (LCRP).  

In recent preliminary action taken, the House Appropriations Committee has only provided $25M for lung cancer research and the Senate did not include any funding in its draft FY23 Defense Appropriations Bill for the LCRP. Please join our sponsors, Rep Boyle and Senator Jack Reed in urging House and Senate Appropriators to increase funding to $60M for the LCRP this year.  It's easy and takes a few seconds. RESEARCH=SURVIVAL!

Take action here

"U.S. Clinical Trials After Osimertinib" Spreadsheet Now Available and Regularly Updated


Includes clinical trials organized by the following:  EGFR common/uncommon mutations, Exon 19 with C797X, Exon 20, MET, HER2, No new resistance mechanisms/HER3, Leptomeningeal Disease/Brain Mets, and SCLC Transformation. Updated regularly.

If you know of a new or a clinical trial missing from the list on the spreadsheet, please contact Laura Book at laurabbook@gmail.com . We would also like to compile a list of people participating on these trials so that we generate a list of patient contacts for others interested in their trial experience to talk to. For those who are or have participated on any of these trials, please email your name, phone number, trial number to Laura Book at laurabbook@gmail.com
Access the Clinical Trials After Osimertinib spreadsheet here
What Questions Should Patients Ask About Joining a Clinical Trial?
Understanding Common Clinical Trial Terminology
Healing the Soul

Will I Be Next? Coping With Fear When Friends Die

By Tess Taft msw, licsw © all rights reserved

“I’m in my dark place. I’m stuck in cancer
thinking. I don’t want my life to be minor
distractions from fears of my own death.”
KS, coping with cancer

“If you see a piano falling, push me under it.”
MR, struggling with recurrence

“The fair is in August. That’s all the fair we get.”
MR

 

You EGFR RESISTERS are a very special community of people committed to stopping lung cancer in its tracks. When one of you dies, it may feel like a part of each of you died, too. It also can trigger all your fears that the next scan or test you face will devastate you. It can take a lot of effort to find your energy for the fight again.You may want to pull away from the support the group offers for awhile, to avoid the scary news others must face, but that will only serve to isolate you further. Cancer is lonely enough as it is. You can’t meet weekly or face to face with the other survivors who are fighting along side you, yet they are there, counting on your support, as you have counted on theirs. You know the benefits of your on-line support: privacy, getting ideas from the group to help you stay motivated to manage the cancer in ways that can be added to active treatment (like diet,etc.) and you can lean on the hope of others when yours falters for awhile, as it will. That’s normal. EGFR supporters are always available. Instead of stepping back, think about stepping further into the group support, sharing your feelings with others who can understand you more than anyone else, especially when times are frightening for you.

This is what can happen: When people—even on-line friends we have not met in person— die of the same disease we are struggling with, grief and anxiety collide within us. The low hum of fear which follows us like a shadow becomes a shout from within that feels beyond consolation.

Read more
 Research 

Osimertinib Remains the Preferred Frontline Choice for EGFR-Mutated NSCLC

From OncLive

Osimertinib (Tagrisso) remains the preferred first-line therapy for patients with EGFR-mutated non–small cell lung cancer (NSCLC), Zosia Piotrowska, MD, MHS, told her audience at the 17th Annual New York Lung Cancers Symposium®.1

However, for those with classic EGFR mutations, exon 19 deletions and L858R substitutions, she believes the day is fast approaching when physicians will add chemotherapy to first-line treatment with the EGFR TKI based on circulating tumor (ct)DNA results. Piotrowska, an assistant professor of medicine at Harvard Medical School and an attending physician at Massachusetts General Hospital, noted that there is subgroup of persister cells that osimertinib cannot eradicate that chemotherapy may be able to target. Furthermore, reserving chemotherapy is suboptimal because many patients never proceed to second-line treatment.

“We know that chemotherapy is an effective strategy for these patients,” she said. “So perhaps they’ll do better if we give them both up front.”

Read more

The Future of Treating Oligometastatic Lung Cancer Is Personalized Care

From International Journal of Radiation Oncology; Jill Feldman

As someone who has been fighting lung cancer indirectly and directly for almost 40 years, I have witnessed and celebrated the rapidly changing landscape of lung cancer diagnosis and treatment. After losing 2 grandparents and my dad to lung cancer when I was 13 and then my mom and Aunt Dede when I was in my 20s, I got involved in lung cancer advocacy in 2001. At the time, the only distinction doctors could make was whether a person had small cell or non-small cell lung cancer (NSCLC), with only 3 treatment options to offer their patients: surgery, radiation, or chemotherapy.

Then, in 2009, I discovered I had EGFR-mutant lung cancer. There are no words to describe how it felt at 39 years of age, with 4 small kids, to be diagnosed with lung cancer — the same disease that I watched kill my mom and my dad just months after diagnosis. When my disease was diagnosed, research was moving in the right direction, but there still weren't any promising advancements that convinced me the path would change. However, the pace of discovery over the past decade has been remarkable, and I have been fortunate to benefit from the revolution in lung cancer research and care.

Stereotactic body radiation therapy was life-changing and probably life-saving for me. Although it wasn't standard of care for intrapulmonary metastasis, I was able to use stereotactic body radiation therapy as needed for 5 years. It played a critical role in managing the cancer in my lungs and allowed me to delay going back on systemic therapy with horrible side effects. It also gave research time to advance and develop new treatments, like the one I am on now.

The tide has turned in lung cancer research, and with it, so must the paradigm on how to treat people with stage IV NSCLC. Advancements in cancer biology, diagnostics, and new surgical and radiation therapy techniques, along with targeted therapies and immunotherapies, are driving progress, and the dramatic increase in survival illustrates the power of research. Once considered a death sentence, today, we expect patients with stage IV lung cancer to live years, even decades.

We have learned that the orderly process of progression from a primary tumor to lymph nodes and then metastasis to distant organs is complex and that not all metastatic lung cancer is the same. We know that patients with limited (oligo)metastatic disease have a different prognosis than patients with widely metastatic disease, and we've seen the progression-free and quality-of-life benefits when local therapy is used in patients with oligometastatic disease. Still, the rationale for localized therapy in this population has been primarily based on the number of metastatic sites. It doesn't account for the growing knowledge of the genomic makeup of cancer or the tumor microenvironment. As our understanding of the biology of lung cancer evolves and systemic therapies continue to improve, the importance of local disease control will be critical in maintaining survival and quality of life.

Local therapy for treating oligometastatic NSCLC continues to be a controversial and complex topic, with constant debate regarding how to define it, and no large randomized studies that validate an overall survival benefit. There are ongoing studies, and we anxiously await the data, but time is not a luxury patients have. Meanwhile, following evidence-based guidelines doesn't always reflect the modern reality of treating stage IV lung cancer in a routine clinic.

Read more

HARMONIC Evaluates Novel Combination in Growing Population of Never Smokers With Advanced Lung Cancer

From OncLive

Never smokers represent a subgroup of patients with advanced lung cancer whose genetic makeup necessitates the need for targeted therapies and clinical trials aimed at improving outcomes. Compared with smokers, defined as those who smoke over 100 cigarettes in their life, never smokers have associated germline mutations for which targeted treatments may have demonstrative benefit.1,2

The investigational agent LP-300, which was unable to statistically demonstrate activity as a treatment for the general population of patients with advanced non–small cell lung cancer (NSCLC), may hold some potential to address the unmet need in never smokers. In combination with standard-of-care carboplatin and pemetrexed, LP-300 will be evaluated in never smokers with NSCLC in the phase 2 HARMONIC study (NCT05456256).2-4

“LP-300 was originally developed as a neuroprotective agent for chemotherapy,” Joshua Eric Reuss, MD, said in an interview with OncologyLive®. “It is a disodium salt that affects signaling pathways through modification of cysteine residues. In an original phase 3 trial [DMS32212R; NCT00966914], [LP-300] was studied with cisplatin and paclitaxel or cisplatin and paclitaxel alone in advanced NSCLC [non–small cell lung cancer]. There was a promising signal of efficacy in patients who were never smokers, which prompted its subsequent development and investigation in patients with driver mutations.”

Finding a Role for LP-300

In the prior DMS32212R study, the 2-year survival rate for patients receiving cisplatin and paclitaxel was 30% with the addition of LP-300 compared with 25% for those who received chemotherapy alone among all treated patients (n = 288). In the subgroup of never smokers (n = 87), the 2-year survival rate was 63% for those receiving LP-300 with chemotherapy compared with 28% for those receiving chemotherapy alone (HR, 0.519; P = .0462). Among women treated in the study (n = 114), a 65% increase in 2-year survival was observed with the addition of LP-300, with rates of 51% compared with 31% for the combination and control arms, respectively (HR, 0.579; P = .0477). Finally, in a subgroup analysis of women who were never smokers (n = 66), the 2-year survival rates were 72% vs 32%, with the combination and chemotherapy alone, respectively (HR, 0.367; P = .0167).3

Read more

Nadler Reviews Targeted Therapy for EGFR Exon 20 Insertion NSCLC

From Targeted Oncology

Read more

Sunvozertinib Shows Activity and Tolerability in EGFR Exon 20+ NSCLC

From Targeted Oncology

Sunvozertinib (DZD9008) has demonstrated activity in patients with non–small cell lung cancer (NSCLC) harboring an EGFR exon 20 insertion mutation across mutation types and prior treatments, according to data pooled from 3 phase 1/2 clinical trials. Findings from the clinical trials were presented at the International Associationfor the Study of Lung Cancer 2022 North America Conference on Lung Cancer.1

“Sunvozertinib…has compelling clinical efficacy in patients with non–small cell lung cancer who received prior platinum [therapy] and have an EGFR exon 20 insertion,” Lyudmila A. Bazhenova, MD, said in a presentation of the updated findings at the conference.

Bazhenova is professor of medicine at Moores Cancer Center at UC San Diego Health in California.

Bazhenova noted that sunvozertinib is an EGFR exon 20 insertion inhibitor with selectivity for wild-type EGFR as well. The agent received a breakthrough therapy designation from the FDA and the Chinese National Medical Products Administration as a treatment for patients with NSCLC and EGFR exon 20 insertion mutation whose disease has progressed during or after platinum-based chemotherapy.2

Three clinical trials explored sunvozertinib, including WU-KONG1 (NCT03974022), an international phase 1/2 study with ongoing enrollment; WU-KONG2 (CTR20192097), a phase 1 study conducted in China; and WU-KONG6 (CTR20211009), a pivotal phase 2 study conducted in China. All patients in the 3 studies had locally advanced or metastatic NSCLC with an EGFR or HER2 mutation and adequate organ system function. Patients with brain metastases were allowed to participate in the study if the metastasis was stable. Treatment was administered in the studies at doses between 50 mg and 400 mg.

Read more

Thriving With Lung Cancer: What You Should Know About Care and Treatment

From Patient Empowerment Network

What does it mean to thrive with lung cancer? Dr. Jyoti Patel discusses care and treatment goals, reviews current and emerging treatment options, and shares advice for living well and thriving with lung cancer.

Jyoti Patel, MD, is Medical Director of Thoracic Oncology and Assistant Director for Clinical Research at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. She is also Associate Vice-Chair for Clinical Research and a Professor in the Division of Hematology and Oncology at Northwestern University Feinberg School of Medicine. Dr. Patel is a leader in thoracic oncology, focusing her efforts on the development and evaluation of novel molecular markers and therapeutics in patients battling non-small cell lung cancer. 

Watch video here

Tepotinib and Gefitinib Show Long OS in EGFR+ NSCLC With MET Amplification

From Targeted Oncology

The combination of tepotinib (Tepmetko) and gefitinib (Iressa) demonstrated an improvement in both progression-free survival (PFS) and overall survival (OS) compared with chemotherapy in patients with EGFR-mutant non–small cell lung cancer (NSCLC) who developed MET-driven resistance to prior EGFR tyrosine kinase inhibitors (TKIs), according to findings from the final analysis of the phase 2 INSIGHT trial (NCT01982955).1

In updated findings presented at the International Association for the Study of Lung Cancer 2022 North America Conference on Lung Cancer, patients with MET amplification demonstrated a median PFS of 16.6 months (90% CI, 8.3-22.1) with tepotinib and gefitinib treatment compared with 4.2 months (90% CI, 1.4-7.0) with chemotherapy (unstratified HR, 0.13; 90% CI, 0.04-0.43). The median OS was 37.3 months (90% CI, 21.1-52.1) compared with 13.1 months (90% CI, 3.3-22.6) with tepotinib plus gefitinib vs chemotherapy, respectively (unstratified HR, 0.10; 90% CI, 0.02-0.36).

Read more

Amivantamab Combination Shows Efficacy Post-Osimertinib in EGFR+ NSCLC

From Targeted Oncology

Melina E. Marmarelis, MD, medical director of Penn Medicine Mesothelioma and Pleural Program and assistant professor of medicine at the Hospital of the University of Pennsylvania, reports the rationale and key findings from the Chrysalis-2 trial (NCT04077463) of patients with EGFR-mutated advanced non–small cell lung cancer (NSCLC).

A cohort of the phase 1/1b Chrysalis-2 study investigated the combination of amivantamab-vmjw (Rybrevant), lazertinib (Leclaza), carboplatin, and pemetrexed in patients with NSCLC with EGFR exon 19 deletion mutations or L858R activating mutations.

Marmarelis says that osimertinib (Tagrisso), which is now standard of care in the frontline for patients with these EGFR mutations, may or may not have an identifiable resistance mutation. Investigators hoped this combination could improve outcomes after progression with a prior EGFR tyrosine kinase inhibitor (TKI). This combination cohort enrolled patients with a median of 2 prior therapies, 14 out of 20 of whom received prior osimertinib, whereas others received gefitinib (Iressa) or afatinib (Gilotrif). Five had received prior platinum-based chemotherapy.

At a median follow-up of 7.1 months, there was an overall response rate (ORR) of 50% and a clinical benefit rate of 85%. Five patients discontinued treatment, 3 due to disease progression and 2 due to chemotherapy-related toxicity. The safety profile showed no new safety signals or additive toxicity from the combination.

Read more

Science Spotlight: NSCLC Transformation to SCLC

From LUNGevity

Take a behind-the-scenes look at how researchers study lung cancer. Join lung cancer researcher Dr. Triparna Sen as she digs into what’s known about how EGFR-positive NSCLC cells transform into SCLC to escape targeted therapy treatment.

SCLC transformation is a common resistance mechanism for multiple types of NSCLC, including EGFR, ALK, and RET. Hosted by Dr. Amy Moore, LUNGevity’s VP of Global Engagements and Patient Partnerships. Dr. Sen is Co-Director of the Lung Cancer PDX Platform at the Center for Thoracic Oncology at the Icahn School of Medicine at Mount Sinai in New York. 

Watch the video here
Events
Gathering HOPE Social Hour, December 13, 2022, at 8 pm ET/ 5 pm PT
Join GO2 Foundation for Lung Cancer’s monthly virtual networking event where members of the lung cancer community will connect and mingle with new and old friends while lending support to each other. This event will be 60 minutes. Register here.

Go2 Foundation's Lung Cancer Living Room December 20, 2022 at 8:30 pm ET / 5:30 pm PT via Facebook Live or YouTube Live. Topic: What is Health Equity? (Part 2 of 2)

IASLC 2023 Targeted Therapy of Lung Cancer Meeting, February 22-25, 2023, Santa Monica, CA
For more information or to register, visit https://ttlc2023.iaslc.org/
Resources for Hope, Coping, and Inspiration
Coping with Cancer: DBT Skills to Manage Your Emotions--and Balance Uncertainty with Hope, Elizabeth Cohn Stuntz and Marsha M. Linehan
This compassionate book presents dialectical behavior therapy (DBT), a proven psychological intervention that Marsha M. Linehan developed specifically for the impossible situations of life--and which she and Elizabeth Cohn Stuntz now apply to the unique challenges of cancer for the first time.
 
Healing Your Grieving Heart After a Cancer Diagnosis: 100 Practical Ideas for Coping, Surviving, and Thriving (The 100 Ideas Series),
Alan D Wolfelt PhD and Kirby J. Duvall MD

This empathetic guide coauthored by cancer survivor Dr. Alan Wolfelt helps individuals understand and cope with the many difficult thoughts and feelings to which a cancer diagnosis can give rise, assisting them as they find ways to experience peace and joy throughout their journey. 

Co-Surviving Cancer: The Guide for Caregivers, Family Members and Friends of Adults Living with Cancer, Katie Brown
The guide for new caregivers, family members and friends of adults living with cancerIf you are someone who feels deeply that you are surviving the traumatic experience of a new cancer diagnosis alongside someone you care about, this book is for you! 
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