A lung cancer diagnosis can be very overwhelming. How do you make a connection and create a sense of community with people who truly understand what you’re going through? Hear from two people living with EGFR lung cancer who are creating connections among others with the same biomarker. Learn how sharing experiences, information, and understanding, is creating hope with answers for those in the EGFR biomarker community – while advocating for more lung cancer research.
Guests:
Jill Feldman, lung cancer patient/advocate, follow her on Twitter @jillfeldman4
Ivy Elkins, lung cancer patient/advocate, follow her on Twitter @Ivybelkins
Podcast Transcript
EGFR Biomarker Buddies Coping and Connecting
Meet patient advocates Jill Feldman and Ivy Elkins. They are working hard to level the playing field for people living with EGFR lung cancer by:
- making sure that everyone has access to the best treatments and information
- building a network of support for people living with the same type of lung cancer they have.
Different Paths To Becoming Lung Cancer Biomarker Buddies
In 2001, Jill got involved in lung cancer advocacy motivated as a caregiver to a family dealing with lung cancer. At this time the only distinctions doctors could make was whether you had small cell or non-small cell lung cancer. There were only three treatment options: chemotherapy, surgery, or radiation. That was the world that Jill’s parents faced when they were diagnosed. Jill’s dad died three months after he was diagnosed with lung cancer. Jill’s mom died six months after she was diagnosed.
In 2009, 39-year old Jill, mother of four small kids, was diagnosed with stage one lung cancer. Her biggest fear was becoming a reality. There wasn’t any promising research at the time to convince Jill that her path would be different from her parents. So more than a decade passed to discover this gene and then understand it, understand the biology of it and figure out how to treat it. In 2013, the first EGFR-specific targeted treatment was approved as first line therapy.
“I mean, I had no idea that I could even be diagnosed with lung cancer. I didn’t think I had any risk factors. I didn’t know at that point what I know now, which is that anyone with lungs could get lung cancer.” – Ivy Elkins
Ivy’s lung cancer diagnosis in November of 2013 arrived after months of chasing down neck and elbow pain issues.
New Treatments Makes A Difference In Life Expectancy
The discovery of different lung cancer mutations has made great research advances. As we learn more, we’re seeing that really lung cancer is not one disease. There are very different treatments depending on the type that you have. And getting those treatments, getting the right treatment for the type of cancer you have, is life-saving. The discovery of the EGFR mutation and its sub-mutations have made a difference in Jill and Ivy’s lung cancer treatments.
Now there are many more treatment possibilities for people who are living with lung cancer – and especially with the EGFR biomarker. Jill has been living with lung cancer for a long time. And Ivy has lived eight years since she was diagnosed.
EGFR Resisters: Sharing Information and Power
Online communities are so important for people to get support and gain education from each other. Some host events and webinars through the community. There’s a lot of things that you can learn through being part of one of these patient communities, like information about new treatments and clinical trials. The online patient group EGFR Resisters is one of these ocogene communities.
Ivy and Jill have been part of this force at EGFR Resisters – working in creating partnerships with other advocacy groups, with industry, with different organizations to come up with ways to accelerate research. Jill and Ivy want to see a world where everyone who is diagnosed with lung cancer has the same access and the same possibility for treatment as everyone else. EGFR Resisters online community reaches people who are not necessarily at a major academic medical centers. Their providers might not know about the latest treatments and clinical trials.
Making Connection Aids Research
You can feel alone when diagnosed. Overwhelmed and not knowing the language and terminology. There’s just no substitute for someone who knows exactly what you’re going through. Meeting someone who understands what you’re going through, whether it’s someone close by or whether it’s online through a patient group, like the EGFR Resisters, is just an incredible way to connect.
“So it was tremendous to have someone to talk to who was also living with lung cancer. I also had young kids when I was diagnosed. And we talked about all kinds of things, including what to tell the kids, how to tell the kids, just everything.” – Ivy Elkins
Finding Silver Linings Through Humor
Many people who have been diagnosed with cancer consider their diagnosis a gift. Maybe it has forced them to slow down and take a good look at their life. Or maybe a cancer diagnosis helps them to focus on beauty in nature. Whatever the reason, Jill says, “I do say I would’ve returned it a long time ago had it been a gift.”
But, Jill does find that humor is a coping mechanism that allows her to “get the elephant out of the room.” And, with the humor breaking the ice, she finds that she can talk about her lung cancer diagnosis, what’s going on with her treatments, etc. without everything being frightening or negative.
Jill uses what she calls “little jokes” to lighten the mood. One she uses often is: “I always shower and I always put on makeup and do my hair for my doctor’s appointments because I want to look like I’m worth saving.”
For both Ivy and Jill, the connection they have with their EGFR biomarker community helps combat the ups and downs of living with lung cancer. Finding others who know exactly what they’re going through is one of the silver linings through their lung cancer journey.
Resources:
- What do I need to know about biomarker testing?
- Targeted therapies for lung cancer treatment
- EGFR Resisters, a patient-driven community dedicated to improving the outcomes for those with EGFR positive lung cancer.
