[ Anglais] How Can Lung Cancer Patients Stay Involved in Research to Innovate New Treatments?

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Can lung cancer patients attending medical meetings bring about real change in the science? Noted oncologist, Dr. Lecia Sequist provides expert perspective on the impact of patient and advocacy involvement pushing research forward through a “vital two-way communication road.”

No one knows this better than ROS1der and lung cancer advocate, Janet Freeman-Daily. Janet shares real life examples of how patients having meaningful dialogues with researchers, continues to have a rewarding mutual benefits.

Jessica Wittebort, care partner to, ROS1der Marisa Wittebort, shares how the rapidly evolving lung cancer landscape gives her a tremendous amount of hope that lives through science. Hear from a lung cancer researcher, patient advocate and care partner on  how they are removing obstacles to research by staying involved to bring about real change in lung cancer.

This is a Patient Empowerment Network program produced by Patient Power. We thank Celgene Corporation, Genentech, Helsinn and Novartis for their support.

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

And greetings from Carlsbad, California, near San Diego.  I'm Andrew Schorr from Patient Power.  Welcome to this Patient Empowerment Network program.  I'm so excited.  It's where we can learn how can lung cancer patients stay involved in research and innovate new treatments to benefit the lung cancer community.  

Let's meet our guests.  First of all, we wanted to have Marisa Wittebort, who is a ROS1 lung cancer patient, but unfortunately Marisa is having a medical procedure, and so she couldn't be with us.  But joining us from New York City is her sister, Jess, who's been with her every step of the way.  Jess, thank you so much for joining us.  And, first of all, how is your sister doing?  

Jessica Wittebort:

Yes, she's doing good.  Thanks so much, Andrew for having me join today.  Marisa's good.  She has another pesky effusion that needs more attention today, so I'm joining you, but thank you very much.  

Andrew Schorr:

Okay. Well, all our best to Marisa.  

Jessica Wittebort:

Yeah, I appreciate that.   

Andrew Schorr:

You know, the role of a care partner such as yourself, a sister, a spouse and other family members is so critical.  Okay.  

Let's also meet someone else who has been living with lung cancer personally and that is our old friend—she's not old, though—Janet Freeman-Daily who joins us from Seattle.  Janet also happens to have the ROS1 mutation like Marisa, and she is so active in going to medical conferences all around the world.  Janet, thanks for being with us.   

Janet Freeman-Daily:

Thanks for inviting me, Andrew.  

Andrew Schorr:

Okay.  And, Janet, you—how many conferences have you spoken to that are medical conferences, but you're a patient who gets up and says, here's our perspective?  How many?   

Janet Freeman-Daily:

I think it's five or six at this point.  

Andrew Schorr:

I bet.  And we're going to get—we're going to talk more about the importance of that.  So you're one side of the coin, as is Marisa, and then we have a leading cancer researcher joining us from Mass General in Boston devoted to people with lung cancer. That's Lecia Sequist.  Dr. Sequist, thanks so much for being with us.  

Dr. Sequist:

Thank you for having me. This is really a treat.   

Andrew Schorr:

Okay.  So you've been at medical conferences where you've heard people like Janet speak.  Does that inspire you when you are actually at what would otherwise be just thousands of cancer specialists, but the patient perspective is put right front and center?   

Dr. Sequist:

It's very inspiring, as I'm sure we'll talk about.  It was especially palpable this year at the World Lung Cancer Conference in Toronto just about five or six weeks ago.  Janet was there.  There were so many lung cancer advocates there, and this is a conference that's focused only on lung cancer, and it was really exciting.  

But I would say Janet and I have been running into each other at the hallways of medical conferences for many years, and it is always really interesting to get the patient perspective about a big result that was just presented maybe an hour earlier. And I love running into people at meetings and talking to them about it.  It really helps inform our research.  

Andrew Schorr:

That's what I was going to ask—go ahead, Janet.  

Janet Freeman-Daily:

It's also very nice to run into a doctor after a presentation and say, what did they just say? 

Andrew Schorr:

Right. Right.  So do you, Dr. Sequist besides inspiring you, and then there are people in labs who don't even—you see patients, but there are other people who are only in labs. Do you feel that this communication with people who are living it can actually help get information, promote collaboration and accelerate us towards what we hope will be cures?  

Dr. Sequist:

Oh, absolutely. It's a really vital two-way communication road.  I think having patient advocates learn more about the research process, both the pros and cons about went research process, and see what all is involved and what hurdles we have to deal with all the time as researchers can be really helpful.  We need their help advocating to get rid of some hurdles and the obstacles in our way.   

And there is nothing more informative than finding out what really is important to patients, especially when you're developing a new treatment, hearing from them about what they value, what they—you know, someone who is not living with it may think that a certain side effect is a big deal, yet someone who is taking the medicine will say, you know, actually that's—I can deal with that if it's going to help me live longer.  And finding out where that balance lies is really important and not something you can just guess if you're not in the shoes of a patient.  

Andrew Schorr:

So, Marisa, you've been every step of the way with your—rather, excuse me, Jessica.  

Jessica Wittebort:

I'm channeling her, it's fine.  I'm channeling her.  

Andrew Schorr:

All right. You've been with Marisa every step of the way, and unfortunately she was diagnosed in 2015 at what, age?

Jessica Wittebort:

She just turned 30, yeah.  

Andrew Schorr:

She just turned 30.  You're her big sister.  From the family perspective, what do you hope, with closer collaboration with researchers, practitioners like Dr. Sequist, what do you hope?  

Jessica Wittebort:

Well, gosh, I think we're really just hoping to expedite research, and we want to be part of that journey.  You know, I think when Marisa goes in to see her oncologist and he gives her a high five, because she's doing well, you know at a granular level that that relationship and that everybody is pushing for the same thing.   

I think a little bit that gets lost in translation sometimes when you can get swallowed by the information that comes out of a conference if you're not carefully, right, so learning how to translate that information into something tangible and consumable and being able to respond back to your healthcare professionals I think is just that bridge that's essential to moving things forward.  

Andrew Schorr:

And you've been to some conferences.  I saw you at the Biden Cancer Summit, which had a lot of patients and patient advocates there, but I think you've been to—where did you go?  To Austria or someplace?  

Jessica Wittebort:

Yeah, I went to World Lung in Austria, to meet Janet, frankly.  No, I mean, to see some incredible work in progress and some incredible work, and it's a tremendous amount of content.  I probably understood, you know, 5 percent of it, but at least it got me there starting to understand what the language was, starting to understand what the potential impact of clinical trials are, starting to feel just a tremendous amount of hope that lives through science, and to see my colleagues. You know, Janet is pretty much family, so I think these conferences, it's incredible when patients not only part—you know, really participating, I think that's a big deal.  

Janet Freeman-Daily:

It was also really great for the—there were several ROS1ders there, people who had ROS1 cancer dealing with it at the end of conference, and we got to go up en masse and talk to the researchers about what they were doing, which was educational for us, and I think most of them felt fairly enthused about it too.  

Andrew Schorr:

Janet, you've spoken at some of these congresses.  What do you want to say to that clinical and research audience? What are you trying to bring forward to them as somebody living now, what, four or five years with stage IV lung cancer?  

Janet Freeman-Daily:

I was diagnosed seven-and-a-half years ago.  

Andrew Schorr:

Seven-and-a-half years ago.  So, thank God, treatment, and you've been in a trial for a long time, has just been remarkable for you, life?extending.  What's the message you bring when you speak?  

Janet Freeman-Daily:

Well, it depends on the setting that I'm in and what I've been asked to speak about. It's been different topics.  Once I've talked about value in cancer care and the cost of cancer drugs.  Once I've talked about the research that the patients with ROS1 were doing.  I've also talked about the importance of goals of care discussions with the doctors to talk about what our treatment options are and what our chances are of them being effective so we could make our own choices about treatment rather than having the doctor decide what we're going to do.  

There are a lot of different topics out there that patients can share their background and perspectives on.  I think one of my more favorite things is running into Dr.  Jean Kooey who created the drug that I'm on and that Marisa started with and that Marisa then took next.  She's the lead chemist on those designs, and we ran into her at the poster session at ASCO, and she got to meet the patients that her drug helps, which was a really big deal for her.  And we're all kind of awe struck, fan girl, oh, my God.   

Andrew Schorr:

So, Dr. Sequist, does that make a difference?  Because there are maybe many thousands of people working around the world on lung cancer now, some people only in labs, and never meet a patient like with a more rare mutation like ROS1.  Does that make a difference when that connection can happen?  

Dr. Sequist:

Oh, absolutely. I do think it's really important for people who are working on the basic science aspects of cancer and in a laboratory, a little bit removed from the patients, to meet patients and survivors and see what their work is leading to.  At Mass General, we routinely have tours of our lab so that the people that work in the lab, not just the lead scientists but even the techs who are there for 10, 12 hours a day working hard for them to see how their work can really make a difference.  And I know lots of other centers will do that as well.  

Andrew Schorr:

So we're getting into this age of personalized medicine, and I was in Boston a week or so ago and whether it's out of MIT or your partners group in Boston, there's all this computing power coming into play to try to understand what is our personal situation with a cancer and how do you develop or do you have medicines or trials that line up with that.  And that's been a real work of yours, right, is to try to look at the subsets of lung cancer.  How are we doing in that?  We talk about ROS1 and you have KRAS and ALK and EGFR and all these different types and then some types that haven't been identified yet, right?  

Dr. Sequist:

That's right.  I think if you take the long view and look at 10 or 15 years ago where the field of lung cancer was, it is a totally different landscape today.  We have come so far in being able to personalize not only the clinical trials that are available for patients but then subsequently the approved treatments.  And there have been a lot of exciting advances in lung cancer that are a little bit less personalized lately, specifically immune therapy.  That works with a bit of a broader brush, but the success in the personalized targeted therapy is unparalleled in other tumors types at the moment, and so I think everyone that works in lung cancer is really proud of how much the field has moved forward.   

Andrew Schorr:

But you're doing detective work, so some of these genes weren't originally identified, and you have probably a lot more to go, so what's going on now where for people where a gene wasn't identified maybe you'll have that?  You'll find out what the factors are or if somebody switches from one driver gene to another?  

Dr. Sequist:

Yeah, there are a lot of important things that go into that.  One is being able to test each patient, and there are now several ways that you can test for the key mutations.  The gold standard is still testing tumor biopsy, but liquid biopsies are also coming really into the forefront ready for prime time.  Janet and I actually collaborated—well, Janet led the collaboration on an article that we wrote together about liquid biopsies and how it's—and demystifying some of these things for patient audiences.  

But looking at the tumor is important, and then actually important is getting patients to the right trials.  You're not going to be able to prove that something works if you can only find one patient with that mutation.  You really have to reach all over the country and sometimes all over the world to find patients specifically for a situation.  And that's one area where patient advocacy groups have been extremely helpful helping bring patients together with the trials that fit their situation.  

Andrew Schorr:

So tell me—go ahead.  I was just going to—Janet, what's the message then to people watching so that they can get the care or the testing or help involved to push research further?  What do you want to say to people?   

Janet Freeman-Daily:

Well, I think one of the valuable things that Lecia brought out is that we are developing or identifying new mutations all the time.  When I was first diagnosed nobody knew about ROS1.  It hadn't even been published yet.  And when I found out about it and I brought the article to my local doctors in the community setting they didn't know how to test for it.  And yet when I got tested and they found that I had ROS1, I have been on a drug now that I'm coming up to my six?year anniversary for my clinical trial, and I'm still no evidence of disease.  

So what I would tell people is it's really important to keep track of the research and to stay on top of the new developments.  And so the patient communities are really good at that, because you might find a new option that didn't exist when you were first diagnosed. 

Andrew Schorr:

And so that's something that you, Jess, and your sister do all the time, right?  And so you know you have this ROS1 version of lung cancer for your sister, you don't know if something will change or other factors will come in, so you keep your ear to the ground very much and connect with the community.  

Jessica Wittebort:

Absolutely. So tactically what do we do?  We have our Google alerts always set to any medicines that we've heard about, any clinical trials that we've heard about, any researchers that are working in the space.  For us, we have a ROS1 community online which is—we have a public one, and we also have a private one on Facebook where we're able to just very openly bounce ideas around and talk about things we don't understand and get those concepts in our heads.  

And oftentimes those relationships lead to actually meeting offline.  So most cities that Marisa or I visit for whatever reason, whether it's going to see a doctor or going to an event, we get to meet somebody offline as well.  So finding—keeping your ear to the ground, yes.  We have great luxury of really—Marisa has a great team, so they will always drive that for her.  But I think it's also something that she is always very keen to share the information that she's getting so that other people are privileged to have that information as well.   

Andrew Schorr:

Go ahead.  

Janet Freeman-Daily:

And a few key researchers like Dr. Sequist, Dr.  Kamish, Dr. Shaw, at a few key universities are the experts in some of these driver oncogenes, and they've been very generous in their time in allowing us to email them questions and say, gee, this question came up in the group, and we don't have any experience with that.  Could you give us an idea of what to do?  So the researchers are key to this.  

Andrew Schorr:

They are. And, Dr. Sequist, thank you for your devotion.  I have a question for you, and that is most people though don't get treatment at University of Colorado or Mass General or Dana-Farber or City of Hope or MD Anderson, and we could list a bunch of the leading institutions.  Most people are told they have lung cancer, they're at a community oncology practice, they're terrified, and you're leading change. You're on the leading edge, all of you, in lung cancer, but that sometimes hasn't quite—I don't want to say trickle down, but you're on the podium at World Lung or ASCO, and you're talking to a thousand doctors sitting there, and we're hoping that it gets to them, and a patient walks into their clinic, though and maybe some of this isn't brought to bear.   

What can the patient or the family member do so that this knowledge that's emerging in lung cancer can be brought to bear at the community level?  What's the patient or the family member's role today?  

Dr. Sequist:

I think medicine is changing, and we are no longer in an era where any one doctor can know everything about medicine.  I mean, we haven't been in that era for a long time.  And it's very difficult to be a community oncology, a general oncologist today.  There are so many new treatments and new genes and new strategies coming out for every type of cancer in rapid succession, so keeping up with all of lung cancer advancements plus all the other tumor types is quite a challenge.  

That's why I think that now more than ever as cancer gets so complicated it does work really well for patients to be able to connect with other patients and lung cancer specialists online, through activities like this, through many other educational activities that are available and advocacy groups because—just because a community oncologist has never heard of ROS1 I don't think makes them a bad community oncologist. But hopefully the message is getting out to the community to partner with super sub?sub specialized academic centers if a mutation like this is found in a patient.   

Andrew Schorr:

Okay.  So, Janet, what do you tell people, what do you want to tell our viewers who were probably treated at least initially at a community center, and they have no clue whether they have some subtype, rare or not, of the lung cancer and what to do about it?   

Janet Freeman-Daily:

If a person has lung cancer and it's non?small cell lung cancer, you should have gotten genomic testing at some point. And if you didn't, you need to ask your doctor about that.  If your doctor is not familiar with it, and some of the general practitioners and community oncologists may not be as comfortable with it as other lung cancer specialists, then get a second opinion, preferably at a major academic cancer center.  

If you want to learn more about this, there are a large number of online patient groups where you can ask questions and get educated about this, or you can go to websites of some of the lung cancer advocacy organizations like LUNGevity, Lung Cancer Foundation of America.  They have a good deal of information where you can start learning about things to get yourself educated on the topic.  

It's—I still hear patients who are stage IV lung cancer, and their doctor sent them home on hospice without ever doing genomic testing.  It's really important that you make sure you get the tests that are in the standard of care.  

Andrew Schorr:

So, Dr. Sequist, just back to you.  This genomic testing is to see, is there an oncogene or cancer gene that's driving your cancer that either an approved or maybe a clinical trial experimental medicine may target, right?  Okay? 

Dr. Sequist:

That's correct. And, as Janet was saying, it's vitally important for every patient that's diagnosed to get tested at a minimum for the genes that correspond to FDA?approved medications. But there are several second?tier mutations that I believe everyone should be tested for, because there are clinical trials that even if it's not available at the community site where they first sought care, hopefully it's available someplace that's not too terribly far from where they live.  

Andrew Schorr:

Okay.  So I'm sure that Janet follows this and Jess of course, can the genes change?  So, in other words, in lung cancer if Mrs. Jones is seen to have a KRAS mutation, just to pull one out, early on, does that always remain what's driving her lung cancer? Or might it change, and there might be a need to test again? 

Dr. Sequist:

Who are you asking?  

Andrew Schorr:

Dr. Sequist, first.  

Dr. Sequist:

I think we're all experts in this, so we can everybody chime in as well.  If the cancer truly has a driver oncogene what that means is that every single cancer cell in the tumor carries that genetic mark. Probably the very first cancer cell that came up in the body had it, and then every daughter cell that was created afterwards carries this mark.  As patients—so typically these are EGFR, ALK, ROS, MET, RET.  These are the ones that we have targets for, BRAF, targeted drugs. 

Now, once a patient is on a targeted drug you can think of it like evolution, like survival of the fittest.  So a drug is exerting pressure on the cancer, many cells are dying, but sometimes a cell will have a certain characteristic that allows it to live through the drug treatment, and then from there a resistant tumor can grow.  And so second mutations or second pathways can become activated after patients have been treated with certain drugs.  And the more drugs that people have been exposed to over time the more different subpopulations that might have varying signatures come up.  

But you never lose that original mutation.  It's something that is always carried forward.  It's just what else piles on top of it across the different arms.  I describe it as different arms of the family or cousins.  Like this tumor is a cousin of that tumor, because they do have some different characteristics but still that same core characteristic.  

Andrew Schorr:

And you were saying about retesting?  

Janet Freeman-Daily:

So some drugs we know that if they stop working there's another drug that you can go to, but as we develop more and more drugs and EGFR, with which Dr. Sequist is very familiar, has more drugs than the rest of us.  When patients take certain of those drugs second or third line they actually might develop a different mutation and will have to get retested to find out how to treat that.  We're right on the forefront of learning about how the genomics of cancer works, and we learn new things all the time.  

Andrew Schorr:

So, Jess, you and your sister have sought out eminent specialists at major centers, but, as you said, not everybody goes there.  What advice do you have to patients and family members, especially family members, because sometimes the patient is so terrified just being led through care and the family member has to pick up the mantle?  What would you say so that the loved one gets the best care? 

Jessica Wittebort:

For us the most profound change has been to find a specialist at an academic institution. I think if you don't—if you're not able to do that, it is really important to find your patient group and start asking, what are they doing.  What information can you get your head around?  And keep your head above water, because I really do believe there's so much hope and there's so much energy right now and momentum in this space that it's important to just keep finding, keep looking for the information. And if you're not getting the answers that you need or are too complicated figure out a way to not feel shy about asking again. 

Andrew Schorr:

Amen.  So you mentioned earlier, Janet, about getting tested, right?  

Janet Freeman-Daily:

Yes.  

Andrew Schorr:

So what if the test doesn't identify anybody?  Should they be forlorn?  I'm going to ask Dr. Sequist, too.  If one of these genes that we rattled off doesn't show up or driver gene should they say, oh, my God I'm out of luck?  

Janet Freeman-Daily:

No, not necessarily.  Targeted therapies are easy to take in that you can take a pill once or twice a day, but they're not the only new therapy that's come out, and most of the patients who do not have a targeted treatment can take immunotherapy.  That's the new standard of care, and it works really well. I'll let Dr. Sequist talk to that. 

Andrew Schorr:

Let's understand that, Dr. Sequist.  So if somebody doesn't have any of those genes but both of you have mentioned immunotherapy, how does that work and how does that help?  

Dr. Sequist:

So one quick point before we get to immune therapy is that it's really important if you are told that you don't have any specific mutations that you make sure that the correct panel was done.  Sometimes there are small panels that may miss important genes simply because they're not part of the panel.  So the test may be negative for everything that was assayed, but it may not rule out some of these rare mutations.  Like Janet was saying, her mutation wasn't even known about at that time she had the first testing done so she had to have repeat testing.  And this is a very common story.  So that's what I wanted to say about testing.  

But immune therapy is—really been a game changer in cancer in general including lung cancer, but this is the idea of trying to get someone's own immune system so attack the cancer.  Our bodies are supposed to do this.  Our immune system is supposed to be on surveillance for cancer cells, treat them as foreign and destroy them, but obviously if a tumor grows to a point where you're getting a diagnosis of cancer, something has gone wrong in that process.  Usually it is that that tumor is camouflaging itself in some way from the immune surveillance, and some of the new treatments that have been approved over the last couple of years in multiple types of cancer essentially rip off that camouflage, allow the immune system to see that the cancer is there as a foreign invader and start to attack it.  

In lung cancer, this works best on the, as Janet was mentioning, the type of cancers that don't have a driver mutation, the types of cancers that are more often associated with a history of smoking or exposure to some other carcinogens, and immune therapy has really changed the survival and the treatment options for a large population of lung cancer patients.  

Janet Freeman-Daily:

And I just want to reiterate that it's very important that you get genomic testing before you start immunotherapy, because the data we have now indicates that immunotherapy usually does not work for those of us who have driving mutations.   

Andrew Schorr:

So… 

Dr. Sequist:

…and it may increase the toxicity of some of the targeted drugs, so not only may it not work but it might harm your chances of having a nice, long response like Janet and Marisa are having.   

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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