2nd Annual Lung Cancer Action Network
Representatives from many different lung cancer groups attending the 2nd Annual LungCAN Meeting hosted in the GO2 (formerly Bonnie Addario) Living Room.

Highlights from 2nd Annual Lung Cancer Action Network (LungCAN) Meeting

Attended by Laura Book, EGFR Resisters member
The Lung Cancer Action Network (LungCAN®) is a collaborative group of lung cancer advocacy organizations that have come together to raise public awareness about the realities of lung cancer. Its intention is to increase funding for detecting, treating and curing the disease. This year’s meeting included representation from the EGFR Resisters, Alk Positive, Alk Fusion, RET Renegades, and ROS1ders biomarker groups. The meeting took place in San Carlos, CA, August 15-16.
LungCAN’s initiatives through the past year include:
–Know Cancer National Survey: Out of more than 2,000 respondents, less than 5% knew even basic facts about lung cancer. This survey was initiated in the hopes of garnering media interest in Lung Cancer Awareness Month.
–Radio Media Tour, sponsored by AstraZeneca. It included a series of individual interviews with Dusty Donaldson and various radio hosts across the country. There was also a recorded Audio News Release distributed widely nationwide, including XM radio. The campaign focused on early detection, general awareness with a theme of hope. It was incredibly successful, reaching more than 80 million people. They hope to conduct another radio media tour again this year, as funding allows.
Topics Discussed
GO2 Screening Video campaign to be broadcast out. Click on the link to see a preview.
–Genentech stigma study; Megan Cox, from Genentech, presented preliminary results showing that stigma against cancer is waning.
–Comprehensive Biomarker Testing was the biggest takeaway. It was felt that the descriptive word “comprehensive” should be used to include all testing possible today. Many patients are not receiving comprehensive biomarker testing or any type of biomarker testing upon diagnosis with both tissue and blood and this is one of the greatest needs of the community and where the medical profession is failing many of us.
ALCMI remains its own entity in the GO2 merger and is run by Tony Addario, Bonnie’s husband. It has done projects on liquid biopsies, young lung epidemiology, and others. Some are funded by pharma, others supported by survivors. ALCMI does the vetting, budgeting, contracts with vendors. In its Young Lung study, kits were sent out to collect tissue samples to survivors 40 and younger. The patients took the kits to their doctor and they were then sent to Foundation Medicine for next gen sequencing. Because of this study, two young EGFR mutations in Italy were discovered that wouldn’t have been identified otherwise. ALCMI still uses the leftover tissue from that study and shares it with other studies.
–Other areas of need: increasing research funding, more diversity in clinical trials and financial assistance, more active advocates, more patient voices in research, embedding comprehensive biomarker testing in oncology/medical provider practices and processes, decreasing stigma.
–Medicare 14-day Rule: In a nutshell, the 14-Day Rule has been a historical nuisance and patient access barrier to timely comprehensive biomarker testing delays. Hospitals would hold test requisitions 14 days before sending them to a laboratory so that the lab could bill Medicare separately and the hospital would not have to get involved in payment issues. Doctors would put sticky notes on patient files/requisitions that said “hold for 14 days.” Tests were routinely run on days 15 and 16 post-discharge. In 2017, the Patient Advocacy, Laboratory, Pharma/Biotech community worked together to overturn this. Unfortunately, now CMS is proposing to basically reverse this change, in part because they are not convinced that rolling back the exception will meaningfully impact patient access.
–Radon: You should check your house and water (if you have a well) for radon which can occur anywhere and can cause lung cancer. You can buy inexpensive test kits at a hardware store or online.
Pharma Updates
Representatives from Genentech, Bristol Myers Squibb (BMS), Amgen, AstraZeneca, Foundation One, Guardant360, and Pfizer were present at the meeting as well and gave presentations.
Guardant360
–50% of patients with known mutations are not receiving targeted therapy!
–Guardant will eat costs that are not covered by insurance, Foundation One will not, but will work with you financially.
BMS
Studying why immunotherapy does not work in some patients.
Researchers are focused on identifying potential responders and nonresponders and developing appropriate treatment options for each group, such as chemotherapy only, IO only or a combination therapy.
Genentech
Dr. Barbara Gitlitz shared a number of interesting lung cancer statistics about the evolution of lung cancer:
○ Used to be a man’s disease and a smoker’s disease
○ Incidence of lung cancer is decreasing, but half as fast in women as in men
○ Women born in the 60’s have a higher incidence of lung cancer than men
Representatives from (left to right) ALK+, ALK Fusion, EGFR Resisters, RET Renegades, and ROS1ders .groups

Fundraising = Research = Survival

As a cancer survivor, there is no delicate way to put this: We are dependent on research for our continued survival and that costs money, lots of it. We each need to do our part in trying to raise money so that the EGFR Resisters can continue to fund research that will help us all stay alive. This may sound daunting, but it is quite easy.
If you have a birthday, forgo the cards and presents and start a birthday fundraiser for yourself a few weeks before your actual birthday. You will be amazed at how much you can raise. One of our members recently raised $2400 just by starting a birthday event page on our EGFR Resisters page and posting the event link page to social media like Facebook and Twitter and sending the link in an email to friends and family. $1000 of that total was donated by a person on Twitter that she did not even know!!
Here’s how to create your own fundraising event page:
Go to https://www.supportalcf.org/egfr-resisters
Click on “Create an EGFR Page” to create your very own page! Make sure to tell your story on your page and what research means to you as well as setting up an ambitious goal.
Currently we have raised $118,161 towards our goal of $260,000! Together we can do this!

Update: Day on Capitol Hill The Go2 Lung Cancer Foundation National Advocacy Summit 2019

On July 23rd, 170 advocates from 30 states took to Capitol Hill asking their Congressional representatives to support two major issues: (1) restoration of the funding level of the Congressionally Designated Medical Research Program (CDMRP) lung cancer budget to $20 million which had been previously cut to $14 million; and (2) co-sponsorship of the Women and Lung Cancer Research and Preventative Services Act of 2019 which was originally introduced to Congress in 2016 and has been sitting for too long without any action taken on it.
As a direct result of the Advocacy Summit, the Women and Lung Cancer Research and Preventative Services Act of 2019 picked up 11 additional cosponsors in the Senate and 27 in the House!
This bill:
  • Requires the Secretary of Health and Human Services (HHS) to conduct an interagency review to evaluate and identify opportunities to develop research strategies in exploring the differences of lung cancer in women with respect to risk factors, incidence and response to treatment. It will also identify opportunities to accelerate the implementation of preventive services for women and the development of national public education and awareness programs about the impact of lung cancer on women and the importance of early detection.
  • In addition to a thorough review, the bill requires a report to Congress identifying specific opportunities for a collaborative, interagency, multidisciplinary, and innovative research program on lung cancer.
  • In short, the legislation communicates the need for more research investment in lung cancer especially in under-represented areas, to unlock knowledge and prioritize and coordinate the work of federal agencies to improve survival and mortality rates not only for women – but all who are impacted by lung cancer.

Calling All Resisters!

Lung Cancer Awareness month in November is fast approaching. To celebrate, EGFR Resisters would like to feature one of you each day of the month on our twitter account (@EGFRResisters). All you need to do is complete the sentence below and email it to us at [email protected]. Please include a photo too if possible.

Because of EGFR lung cancer research,
______________________________________________. 
Possible fill-ins could include: (please be as creative and unique as possible)
I was able to see my child go to college.
I was able to see my child graduate from college.
I was able to attend my son’s wedding.
I am alive and kicking today.

Research News

Go2 Foundation for Lung Cancer Webinar Now Available On-Demand
If you missed this webinar, How Patients can Participate in EGFR Research: A conversation and Q&A with Dr. Pasi Janne, one of the world’s foremost experts in EGFR lung cancer research, you can watch it here.
Hypofractionated EGFR tyrosine kinase inhibitor limits tumor relapse through triggering innate and adaptive immunity (Science Immunology 09 Aug 2019)
Overview by Dr. Dan Cadigan, EGFR Resisters member.
This is an exciting study regarding a novel medication approach to treating EGFR positive cancer with tyrosine kinase inhibitors (TKIs). It looks at the concept of “hypofractionation” versus “hyperfractionation.” Several mouse cancer models were used in the study. In addition, the hypofractionated TKI was also studied in conjunction with use with an anti-PD-L1 antibody (immunotherapy). The study showed that the hypofractionated EGFR TKI had improved effectiveness in triggering anti-tumor cell responses and in preventing relapse, and that the combination with the anti-PD-L1 antibody further improved anti-tumor responses and reduced relapse.
Hypofractionation involves giving larger amounts of medication, that is, a larger dose, less often rather than giving smaller doses on a daily basis. As an example, if a regimen normally involves taking 1 pill daily, this is the hyperfractionation regimen. Hypofractionation would involve possibly taking 5 pills once a week or 10 pills every 2 weeks as a single dose.
Although TKIs for EGFR have been felt to work through direct blocking of cancer growth signals, the authors mention that recent studies show that the treatment might also enhance recognition of the tumor cells and breakdown of tumor cells by natural killer cells and T-cells within the patient’s body from their own immune system.
The authors showed that giving a higher medication dose less often was more effective in preventing relapse then standard dosing, and they showed that the patient’s own immune system played a role in this as well. They felt that their study supported the use of immunotherapy to boost the immune response to be given along with the EGFR tyrosine kinase inhibitor.
The study primarily looked at afatanib (Gilotrif), but also gefitinib (Iressa) and osimertinib
(Tagrisso).The authors found that the hypofractionated (higher dose less often given) regimen reduced tumor burden and also the rate of relapse. They showed that this blocked a pathway more effectively that results in cell death and suppresses cell proliferation.
The study also assessed side effects from the hypofractionated/higher dose regimen by evaluating the mice for weight loss and ocular damage. Less side effects were noted in the mice treated with the hypofractionated dose regimen.
The authors then attempt to explain how such short courses of treatment can limit relapse. They state this could not be due to direct killing of the cells alone, so they proposed that the hypofractionated regimen may trigger the host immune system to control tumor relapse. They measured numerous immune cell types 72 hours after treatment and noted that the levels of these were markedly increased with the hypofractionated regimen but not the hyperfractionated standard treatment. They stated, “these data indicate that HypoTKI is more potent than HyperTKI with respect to inducing an anti-tumor micro-environment that limits tumor growth and relapse.” To confirm this, they then performed experiments in mice with immunodeficiency and noted that although the hypofractionated regimen resulted in initial rapid tumor regression, all tumors relapsed immediately after treatment in these mice, thereby showing that the treatment requires the host immune system to be working and suggesting that an immune response does play a role. They did extensive measurements regarding various aspects of the immune response to confirm their findings.In their studies using a combination with PD-L1 inhibitors, they hypothesized that proper use of a hypofractionated TKI regimen might overcome the resistance of anti-PD-L1 immunotherapy. which is frequently seen in EGFR-mutated patients and which have limited the benefit of such medications in these patients. They found that the response was dependent upon the timing of the immunotherapy. When the therapies were initiated at the same time, tumor regression was improved and relapse rates were lower.
In their summary discussion, the authors felt that the combination of immunotherapy with hypofractionated TKI treatment could control advanced large tumors and limit tumor relapse. They suggested that immunotherapy could be considered as first-line treatment concurrently with a TKI for an EGFR patient. They did mention that another clinical trial presently is showing that the maximal tolerated doses of afatinib can be increased up to 150-200 mg daily, which is about 5 times higher than the normal standard dose at present. They stated that this dose in the clinical trial was given once daily for 3 days and then repeated every 14 days in a 28-day cycle. They suggested their own regimen of twice weekly, in which case the doses could be even higher, and the toxicity would be manageable. Their hope was that the high-dose would kill tumor cells and delay the development of drug resistance. They felt an additional benefit of the combination was that the hypofractionated TKI regimen can trigger specific T-cell responses not seen with PD-L1 blockade alone.
In my opinion, this study presents fairly outstanding data to suggest that higher dose regimens given less often than usual of EGFR TKIs, without PD-L1 immunotherapy medications or with these medications started at the same time, could have potential to enable new mechanisms of allowing the patient’s own immune system to help control tumor growth and improve rates of tumor regression and relapse. This is a rather extensive paper with well documented scientific technique and findings with an exceptional study design. This is a potentially exciting concept which they propose could be studied with other medications for other lung cancer mutations. Read the entire article.

CAR-T Tx Shifts into First Gear in Lung Cancer by Shamali Pal for Medpage Today

Overview by Dr. Jennifer Cipriani, EGFR Resisters member.
Chimeric antigen receptor (CAR) T-cell therapy has been in the news a lot in recent years, mostly for it’s success in treating blood cancers. CAR-T therapy has shown great promise in extending survival in previously incurable forms of leukemia, lymphoma, and myeloma. The hope is that researchers can find equal success in treating solid tumors in the near future.
So what exactly is CAR-T therapy?
CAR-T is a type of treatment in which a patient’s T cells (one of the smartest and most important cells in the fight against cancer) are removed from the patient’s blood, modified in the lab to make them more likely to attack the patient’s own cancer cells, and then given back to the patient by infusion. A gene for a special receptor that binds to a certain protein on the patient’s cancer cells is added to the patients T-cells in the laboratory. The special receptor is called a CAR. When the CAR is added to the patient’s T-cells, large numbers of the CAR-T cells are grown in the laboratory and given back to the patient by infusion. The idea is that these engineered T-cells will now recognize the tumor and attack the cancer cells. Treating cancer this way is more specific and potentially even more potent than chemotherapy.
It is still unknown whether CAR-T can have the same impact on tumors of solid organ origin. Many researchers are working hard at this very moment trying to answer this very question. Scientists and researchers are trying to use what they’ve learned from using CAR-T in the treatment of childhood leukemia and attempting to apply those principals to the treatment of solid tumors. The difficulty comes in trying to target the tumor while avoiding toxicity to the patient. According to Dr. Alastair Greystroke of the University of New Castle in England, “There are clinical trials starting for the new generation of CAR-T cells in solid tumors, including lung cancer, which are targeting a number of different known tumor antigens.”
According to the review, a search of ClinicalTrials.gov using the search terms lung cancer and CAR-T cell returns multiple studies, more than half of which are being conducted in China. The majority of these trials are in the recruitment phase. In the U.S., CAR-T trials including lung cancer are planned at the NCI, Memorial Sloan Kettering Cancer Center, and the University of Washington in Seattle. These trials are enrolling patients with specific protein markers on the surface of their tumor cells.
For instance, the trial at the University of Washington (Genetically Modified T-Cell Therapy in Treating Patients With Advanced ROR1+ Malignancies) is a phase I trial looking at the side effects and best dose of genetically modified T-cell therapy in treating patients with receptor tyrosine kinase-like orphan receptor 1 positive (ROR1+) stage IV advanced non-small cell lung cancer (NSCLC) that has spread to other places in the body and usually cannot be cured or controlled with treatment. Potential patients must have ROR1 expression in > 20% of the primary tumor. Genetically modified therapies, such as ROR1-specific CAR T-cells, are taken from a patient’s blood, modified in the laboratory so they specifically may kill cancer cells with a protein called ROR1 on their surfaces, and safely given back to the patient after conventional therapy. The “genetically modified” T-cells have genes added in the laboratory to make them recognize ROR1.
One of the best challenges facing researchers is the potential for the engineered T-cells to attack cells other than the tumor cells. If the tumor-associated antigen to which the CAR is targeted also exists on other cells (ie normal tissues) then those tissues are at risk of being attacked and damaged resulting in toxicity for the patient. CAR-T cells may also damage normal tissues by cross reaction with a similar protein on the surface of the normal cells. One major concern is the so-called cytokine release syndrome (CRS) which presets as a “constellation of symptoms including fever, low blood pressure and also potentially neurological and other organ dysfunction”. It is caused by the release of a substance called cytokines and can be very serious and life threatening. This is obviously a major concern and the management of such toxicity is of utmost importance in allowing CAR-T therapy to become more widely used. Another major issue is cost. The 2 FDA-approved CAR-T therapies each cost a minimum of $400,000 per patient.
Many of the obstacles seen in CAR-T therapy in solid tumors are quite different from hematologic malignancies. Scientists have to ensure that CAR-T cells are able to travel to the bulk tumor sites, survive the tumor micro-environment, and persist for a long time so that they will be effective in both the short and long term. All of these trials together constitute that first step in the development of future CAR-T trials that may benefit lung cancer patients. Read the article.

Upcoming Events

IASLC 20th World Conference on Lung Cancer (WCLC), Sept. 7-10, Barcelona, Spain
Anita Figueras Memorial Service, Sept. 15, Canton, NY at 3pm
Anita was one of the EGFR Resisters co-founders. Unitarian Universalist Church, 3 1/2 East Main Street.
ALCF Living Room, Sept. 17, 5:30-7:30 PT
Topic: Immunotherapy Today. Speaker: Dr. Joel Neal of Stanford Health Cancer Center via Facebook Live or YouTube for the live stream.
#LCSM Lung Cancer Social Media Tweet Chat, September 19, 6 pm PT/9 pm ET
LCSM = Lung Cancer Social Media. Topic: World Lung (#WCLC19) Wrap-Up. Join the conversation! Learn more.
ESMO 2019 Congress, Sept.27-Oct 1st, Barcelona, Spain
IASLC 2019 North American Conference On Lung Cancer, Oct. 10-12, Chicago, IL
1st Annual EGFR Resisters Research Summit, Nov. 15-16, Chicago, IL
Jennifer Cipriani, EGFR Resisters member

Jennifer Cipriani, EGFR Resisters member

Member Spotlight: Jennifer Cipriani

My cancer journey began with this one seemingly benign symptom. In the winter of 2017, at the age of 44, I developed a lingering cough that waxed and waned over a period of about six months. Everyone attributed this mysterious cough to frequent viral infections —after all, I am the mother of two young children. Not that unusual, right?

I consulted with a doctor who assured me that it was just a cold or allergies. I was prescribed over-the-counter medications and sent on my way. The cough did seem to go away at times, but it always came back. Even multiple courses of antibiotics didn’t keep it at bay for long. Still, I felt pretty good, overall. I had no other symptoms. And because the cough sometimes vanished, I didn’t suspect a serious health problem. I certainly didn’t suspect that there was a tumor lurking in my lung, waiting to wreak havoc on my life. Given my never-smoker status and relatively young age, lung cancer never crossed my mind.

But there was that one nagging symptom. One day I was providing anesthesia during surgery for one of my ear, nose, and throat colleagues. We spent the entire day working together in the operating room. Apparently, I coughed most of the day because my colleague asked about the cough. How long had I had it? Did I have any other symptoms?He ordered a chest x-ray on the spot. That was the day that changed my life forever. Like so many other cancer survivors, in a matter of moments, my life was divided into “Before and After.” It was the end of one life and the beginning of another.
  
The chest x-ray revealed a mass in my left lung. My colleague and I were both concerned. But at the same time, we were both confident that this mass wasn’t life-threatening. We were both doctors, after all. We knew that the odds were stacked against this mass being lung cancer. I mean, I was only 44 years old! There were other more likely diagnoses, weren’t there? I was healthy and active, I had just returned from a family ski trip… surely, I couldn’t have lung cancer! We agreed that it was most likely an infection that would clear with a course of antibiotics. He ordered a CAT scan immediately. The diagnosis?Metastatic EGFR-sensitizing non-small cell lung adenocarcinoma. Stage IV.

I’m a doctor. I knew what this diagnosis meant. I understood that, realistically, chronic disease and lifelong treatment would be the best-case scenario. I knew that I needed to find a doctor who was willing to do absolutely everything possible to prolong my survival and to treat this disease as aggressively as possible. And I needed to find him fast. I needed to be here for many years. I needed to raise my young children.
  
After six months of treatment with Tagrisso, all of my scans showed a significant reduction in tumor volume and activity. This, coupled with my otherwise good health, allowed me to take the next step: surgery to remove the residual lung tumor altogether.

Living with a terminal lung cancer diagnosis profoundly changes your life. It puts everything into perspective the way little else can. Did I mourn? Oh, yes. I swept through every possible stage of grief (shock, denial, guilt, anger, bargaining, and depression). Then I started working through my feelings. I’ve accepted my diagnosis now. And you know what? I’m actually hopeful about my future. I don’t take anything for granted. I’m alive.

The silver lining is that living with terminal lung cancer has forced me to stop and enjoy each moment and be grateful for every day that I’m here on earth with my husband and children. I’ve gotten better at living in the present. I am vividly aware of the joy in the little things. I’m more aware of everything around me. I focus on day-to-day living and living each day to its fullest. I spend more time with my family, especially my young children. I have significantly downsized my life and everything in it. I live a more simple and pure life, a life with less stuff and more joy.

My children Charlotte, age 9, and Jack, age 6, and my amazing husband Matt, are what keep me strong. I am fighting for as much time with them as possible. They are my world. But there are challenges. It is very difficult living your life with the knowledge that you have a terminal illness. And it’s difficult for your loved ones, as well. Trying to educate family and friends, while also staying strong for them on a daily basis can be hard at times. It definitely takes an emotional toll. And, of course, those of us living with terminal cancer must learn to coexist with that ever-present fear of progression.

Once I had exhausted all the stages of grief, I realized I had two choices: I could surrender and allow myself to keep spiraling down into a deep, dark hole of depression and hopelessness, or I could take positive, proactive steps that could hopefully make a difference for everyone who will suffer and die from this disease. I decided to make the unknown amount of time I have left as meaningful as possible. I’m hoping that sharing my story will help others who receive this devastating diagnosis feel that they are not alone.

If we want to be able to manage cancer the way we manage other unfortunate health conditions — as a chronic, treatable disease — I must do my part. I will continue to spread the word and help to educate the public about lung cancer and its misconceptions. As a doctor, and now a patient, it is my belief in science and modern medicine that gives me hope. I remain optimistic that the hard work of brilliant scientists and medical researchers will lead to the discovery of effective, long-lasting treatments that will allow all of us to live our lives for many years to come.

Thank You From AstraZeneca

We recently asked for your support in a research project that aimed to understand symptoms related to treatment for EGFR-positive lung cancer and their impacts on everyday life. There was a huge amount of interest in the study, with so many of you willing to take part in a telephone interview and share your experiences so we just wanted to say THANK YOU! Your input has been invaluable.

Even for those of you who called and recruitment was already full, or we found a small detail that made you ineligible, we want you to know that this information also helped to better inform the researchers about the real world experience for EGFR positive lung cancer patients, and these issues are being discussed and considered as the next phase of the study is being planned. For example, the next study will have improved eligibility criteria to ensure more patients can participate.

The information learned from this pilot study has been very helpful in shaping future studies, and also showed us areas where we could make some improvements. The results of the pilot study have been accepted in an abstract for presentation at World Conference on Lung Cancer (WCLC) 2019, and will be promoted to raise awareness about the meaningful treatment experiences from the patient perspective. So, we want you to know that your efforts to support research and specifically to take part in this study are already bearing fruit and are so much appreciated!

Thank you!

Books and Videos for Coping, Hope, and Inspiration

Roads to Meaning and Resilience With Cancer: Forty Stories of Coping, Finding Meaning, and Building Resilience While Living with Incurable Lung Cancer, Morhaf Al Achkar
Dr. Morhaf Al Achkar, a family physician and lung cancer patient, offers guidance for those diagnosed with the disease and those supporting someone who has the disease. By interviewing thirty-nine people diagnosed with lung cancer and also including his own reflections, Dr. Al Achkar gives insights into how to broaden our perspective in order to live with the disease rather than narrowly focusing on the reality of eventually dying from it.
A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death, Dr. BJ Miller and Shoshana Berger
a clear-eyed and big-hearted action plan for approaching the end of life, written to help readers feel more in control of an experience that so often seems anything but controllable. Their book offers everything from step-by-step instructions for how to do your paperwork and navigate the healthcare system to answers to questions you might be afraid to ask your doctor, like whether or not sex is still okay when you’re sick. There are also lessons for survivors, like how to shut down a loved one’s social media accounts, clean out the house, and write a great eulogy.
F*ck Cancer: A Swear Word Adult Coloring Book For Cancer Patients & Survivors, Honey Badger Coloring
Are you looking to blowing off steam by customizing unique coloring pages with some f***ing glitter pens?! Need a good laugh?! Then F*ck Cancer is just what you need. Indulge your inner child as you color imaginative designs long held sacred by folks way more enlightened than you (but who probably also enjoyed cursing).
Lung Cancer Resources & Assistance Programs
Some assistance programs available that you may qualify for, if needed. These are good places to start, and may lead to other organizations that are just as beneficial. There is help out there for everyone.
Video:Thriving With Cancer Minute #25: Exercise, Dann Wonser
Video: Thriving With Cancer Minute #26: Say Yes More Often, Dann Wonser
Video: Thriving With Cancer Minute #27: Being a Cancer Bad Boy, Dann Wonser