Andrew Schorr:
Hello, and welcome to Patient Power. I'm Andrew Schorr in Del Mar, California. And joining us from Deerfield, Illinois is my friend a leading patient advocate in cancer, and specifically in the lung cancer community, is Jill Feldman. Jill, thank you so much for being with us.
Jill Feldman:
Thank you. And thank you for having me, Andrew.
Andrew Schorr:
So Jill, it's been 13 years now since your diagnosis of lung cancer?
When Were You Diagnosed With Lung Cancer?
Jill Feldman:
January 19th will be 13 years, yes.
Andrew Schorr:
Wow. So, you have four children who, three in their twenties, one 19. But when you were diagnosed, you were praying that you would see them graduate from eighth grade. And that was because your dad died of lung cancer when you were in eighth grade.
Jill Feldman:
Yeah.
Andrew Schorr:
So it was a big deal.
Jill Feldman:
Yeah. So when my dad died of lung cancer three weeks before I graduated eighth grade, and three months after he was diagnosed. And so, and my mom died of lung cancer when I was in my twenties. So, when I was diagnosed with lung cancer in 2009, my kids were six, eight, 10 and 12. And actually, at the time I remember thinking that there still isn't any promising research that convinces me that my path will be different than my parents.
So when I was thinking about, I didn't want my children to ever have to go through what I went through. And so in discussing goals, my first goal was to see all four of my kids graduate eighth grade. And my youngest was six at the time. So that thankfully happened because of advancements in treatment and research. And actually this past spring, I saw my youngest graduate high school, something I never expected I'd be alive to see.
Andrew Schorr:
Right. 19 years old. So there's story there, not for everybody with lung cancer. And let's be clear about that. You have a certain type.
Jill Feldman:
Right.
Andrew Schorr:
EGFR. There are a variety of types of lung cancer. And it's been variable what progress has been in different types, but there has generally been progress. And you were quoted as saying that the progress even in the last year has been mind blowing. Now, you are a leader in patient advocacy with one of the major professional societies for lung cancer. And you've been on the board of advocacy groups. And you have your EGFR resistors group. What do you want to say to somebody watching who now has given this terrifying diagnosis where not too long ago, what doctors would say is, "You have lung cancer, put your affairs in order."
How Did the FDA Approval of New Lung Cancer Treatments Give You Hope?
Jill Feldman:
Yes. And especially with lung cancer, there's that nihilism that's related to it. Developments in research over the past, yes, maybe 10 years, but really in the past couple of years have galvanized the community with remarkable growth in the number and variety of therapeutic options. And years ago, I never used to use the word hope in the same sentence as lung cancer. Because in my experience with my mom and my dad, there wasn't any hope. But there is hope now.
And I feel so strongly about it that a few years ago, I actually got a tattoo on my wrist that says hope as a permanent reminder. And I think hope is a vital emotion to anybody with cancer. And it means something different to everybody as well. It's a personal... it's personal. Hope is very personal. But on the larger scale for a disease that had a very low survival rate in general, big picture, there are options, right? We never had more than three treatment options, 15, 20 years ago. Now there are so many different options for so many types of lung cancer.
And specifically, for the EGFR lung cancer that I have, I've benefited from research, from a drug that was really approved three years ago. So that is the pace of research. It's hard in a lot ways to see that when you're first diagnosed. And there are always challenges as well. But I think that finding your hope, whatever it may be is the most important thing that a patient can do. And it varies from when you're first diagnosed to no matter where you are in your cancer care. And finding communities and resources like you've provided is really, truly life changing.
Andrew Schorr:
Well, let me ask you this Jill, for a few tips for our audience. So with the pace of change, not every cancer center, not every doctor is always in the know about all the options. So what do you say to patients and families who are diagnosed so they get what's right for them?
What Advice Do You Have for Newly Diagnosed Patients?
Jill Feldman:
I think one of the most important things is exactly what you're talking about. That a lot of times, if you're treated in a community setting by a general oncologist who doesn't specialize in lung cancer, it doesn't mean that you don't have a great oncologist. But that oncologist might not be up to date on the advancements. And it's not necessarily their fault. It's hard enough for the clinicians at the academic institutions to keep up with the research. So, I think one of the most important things is that you have to think about what's important to you.
That's the most important conversation to have. When I was first diagnosed, my treatment was guided by the impact it would have on raising my children. Now my treatment, while my kids are older, it's still impacted on that. But also, it's how I want to live my life and quality of life. So having those conversations with my team about the tradeoffs I'm willing to make, and what's important to me besides living longer is a very important conversation to have. And I think the other important conversation to have is to understand what your options are.
Because there are more options these days. And one of the options for a lot of people newly diagnosed with lung cancer is clinical trial. And it's important to understand that clinical trials are not a last resort. A lot of times now clinical trials are using what we call the standard of care, what a doctor would give to a patient, but it may be adding something to it and may be adding another drug. And they're looking to see if combined that's last longer, is more durable. So especially a lot of people who aren't familiar with cancer, it's important to understand all of your options and to discuss them with your doctor.
Andrew Schorr:
Right. And including ones that may not be approved yet, but are promising and in development. And it may be the first clinic you go to, it may be the hospital across the street. You may need to get some advice from an advocacy group where there may be another center doing research, but I think it's all those tips are so great. Well, Jill Feldman, so your kids are not married yet?
Jill Feldman:
Nope.
Andrew Schorr:
So maybe another goal is dancing at a wedding. Maybe in the time ahead, bouncing a grandchild on your lap. Wouldn't that be great?
Jill Feldman:
Yeah.
Andrew Schorr:
But you've made such a difference to others as you've gone through your journey, both in your family, and then you personally. Thank you, Jill Feldman, for all you do.
Jill Feldman:
Thank you.
Andrew Schorr:
I'm Andrew Schorr with my friend, Jill Feldman, talking about lung cancer. Great advice. And hope for people really more than ever before, make that part of your journey with lung cancer. Remember, knowledge can be the best medicine of all.
