How Can Lung Cancer Patients Stay Involved in Research to Innovate New Treatments? - 2 | Transcript | Lung Cancer | Patient Power


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

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:

Hmm.  This is complicated stuff.  We talked about how difficult it is for the community oncologist who sees sort of all comers to keep up with this.  Let's just review some of the things that have come up recently at medical meetings that you've been at.  

So first of all, Janet, from your perspective as a patient, you go to the World Lung meeting, you go to some of the other meetings, what do you think are the big deals for patients?  Is it more genes being identified?  Is it having immunotherapy work for more people?  What are the big take?home messages we should review for people here? 

Janet Freeman-Daily:

Well, you touched on two of them.  One, there are more genes identified.  I'm not sure I've got quite the right percentage, but at the moment I believe it's about 70 percent of patients with non-small cell lung cancer have a driving mutation for which there's an approved drug or a clinical trial.  Is that right, Dr. Sequist? About?  

Dr. Sequist:

I don't know the exact number, but it's got to be close to there.  

Janet Freeman-Daily:

And then there's immunotherapy, which not only works for some people who didn't have treatment choices but in some cases continues to work after they stop taking the drug for a good period of time.  

But I think one of the other big notes is it appears that immunotherapy may be working for small-cell lung cancer, which has not had a new treatment option in decades, so that is huge.  

However, in addition to treatments I would say the next big thing, and it's not too surprising I'm going to say this because this is what I talked at World Lung, but the fact that we have new patient groups forming around these driving oncogenes, we have enough patients who have been taking these targeted therapies enough, long enough and feeling good enough that they're becoming active as advocates.  And they want to learn more about their disease, so we now have a group for ROS1 called the ROS1ders, for EGFR, EGFR resisters, for ALK, called ALK Positive, or RET, called the RET Renegades, and a separate group for a subset called Exon 20 group for insertions or Exon 20 of HER2 and EGFR.  

And these patients groups are providing guidance to help patients find clinical trials, to help them understand their treatment, to deal with their side effects, to find experts, and we're also funding research.  So there are new research studies being funded by these patients, and the ROS1ders have actually created a study where we are making cancer models of our own rare cancer because researchers didn't have anything to study, and now they have more cells.  In fact, we've got, I think, four new cell lines in the past year and more in development. 

And we also have three patients who have donated to creating mouse models of ROS1, and they hopefully will be useful for us.  And they've already had two different publications on the subject. And without it some of the ROS1 research couldn't be done, so we're very excited about that.   

Andrew Schorr:

Wow, just congratulations to all of you who are involved in this, and I know you've got a big smile on your face, Dr. Sequist.  We used to have such a very short turn for most people with advanced lung cancer, and now, thank God, with research you've done and your peers around the world and in collaboration with patients we have people living much longer, like Marisa, who unfortunately couldn't be with us today, but Janet and some others who are probably watching.  

So that then gives you the opportunity to try to understand them and a lot of aspects of their care and their biology more than you ever could because people are living, right?  So that chance for dialogue is really critical to understand how are we not just, yay, we have the medicines helping people live longer but what's going on, right? 

Dr. Sequist:

Yeah.  I think that's right, and it gives us an opportunity to think more critically about how we can do things differently, whereas 10, 15 years ago we were just trying it to find a way to help people live beyond a year.  That was the glass ceiling that we were trying to break.  And now that we've come so far in lung cancer we can really start looking at some of these important questions about sequencing medications, combining medications.  What does that do to quality of life?  What are other things that affect patients being on clinical trials for years and years, having to go through the scans and the tests?  Trying to make clinical trial more accessible to people because of eligibility criteria that are obsolete.  

So these are some of the lessons I've learned from working with patients in various forums, and it's really very satisfying for me for sure.   

Andrew Schorr:

I know a lot of your work is in EGFR, and if I have it right maybe the incidence of, if that's the right term, of EGFR, let's say in the Asian community is higher.  Is that right?  And so I know the percentage of people in clinical trials is low, like 3 percent.  We need more participation of people from different groups so that you can understand how these different mutations are active more or less in different groups, right, and how certain medicines come into play?  That's one of the collaborations we from all groups need to do with you, right?  

Dr. Sequist:

Well, I think another—that's absolutely right, and another really important role that patient advocates can play is to educate their peers about what clinical research involves.  Many people in this country are just scared about clinical research.  They don't want to be considered as a lab rat, and they think that's something maybe for at the very end of the line when you've exhausted all other options when in fact some of the most promising clinical trials these days are for the very first treatment that you may take as soon as you're diagnosed. 

And having people be aware that clinical trials are not just a way to experiment on a patient but to really offer the patient cutting-edge treatment that they couldn't get outside of a trial and work together to bring new treatments to approval, that message is critical to get out to the public.  

Andrew Schorr:

Right.  And can accelerate medicines getting to the goal line quicker, right?  I mean, Janet, I know you—a lot of what, for the community living with lung cancer, like you don't know how long your ROS1 medicine will work.  

Janet Freeman-Daily:

That's right. It won't last forever.  I will eventually have to try something else, and the drug that I take will probably be in a clinical trial.  I think it's important to know that especially for those of us with driving oncogenes but also for people with cancers that don't have a good effective treatment option, clinical trials may be your best treatment option.  Clinical trials provide hope.  There's no guarantee that they will work, but when you don't have any other option that looks effective or that lasts a long time clinical trials can be very useful. 

Andrew Schorr:

So, Jess, a lot of times a physician will say to a patient, well, I might have a clinical trial for you and the patient comes home to review a whole stack of  legalist documents to try and simple—and the family member says, oh, no.  What would you say to family members too about this idea of clinical trials and supporting your loved one in maybe getting tomorrow's medicine today?   

Jessica Wittebort:

I think it's really important again to find a group of people that are on a clinical trial so you can see how real it is, how okay it is, you know, sort beat down those major misunderstandings, you know.  Fears that you're going to be given a placebo and then you're left to go or whatever the case is.  I think we're still getting in a place where ct.gov or Cancer Commons are able to really very clearly articulate it.  The research is there, the information is there, but I do find it still a bit daunting for people who probably are just freshly diagnosed to understand what it means, so I think… 

Andrew Schorr:

…right.  As Janet said, there are people who can help you with the lung cancer groups she's rattled by, online groups.  There are all sorts of people who can help you, so I want you to—I hope our viewers will take advantage of that.   

So, Dr. Sequist, people—Jess just mentioned about people have this fear of getting a placebo.  If you're in a trial, people want to get the good stuff even though you're not sure what the good stuff is or how good the good stuff could be, but are they taken care of no matter what?  

Dr. Sequist:

Patients are absolutely taken care of no matter what.  There are many different kinds of clinical trials.  Some of them have one arm where everyone on the trial gets the same treatment.  Some of them may have multiple arms, and there could be a randomization where a computer basically rolls the dice and tells you and your doctor which arm you're going to be placed in and you don't have a choice.  

But patients are informed about the design of the trial and the various treatments before they sign up.  We're still—scientifically, before something can become standard of care, we still need to compare it to the old standard of care.  Luckily, in lung cancer there really aren't too many spaces left where standard of care would be placebo, so most patients getting lung cancer clinical trials are treated with a standard chemotherapy or a standard targeted therapy or a standard immune therapy, and then the experimental arm might be a variation on that or something totally different.  

But it's really important, and if you do participate in a clinical trial the person who is talking to you about the participation and getting your consent will inform you of all those things.  What are the options?  What could you be treated with?  What is the purpose of the trial?  How will it help you as a participant?  These are all really important things to understand before you jump in.  

Andrew Schorr:

Here's a question—oh, sorry.  Please. 

Jessica Wittebort:

I was just going to say that Marisa just signed a stack of papers in Boston this week for participating in the blood biopsy trial, and that's maybe the fourth pile of paperwork I've seen her sign.  And it was an incredible process of just her being able to ask any questions, the nurse practitioner sitting down with her answering, answering everything and anything and understanding what it meant.  And, you know, it's—I just think we probably need to figure out how to eliminate some of the fear and the mystery around that process.   

Andrew Schorr:

We did a program the other day and the replay will be posted soon with Dr. Richard Schilsky who is the Chief Medical Officer of ASCO, the big cancer organization, and they're really working hard with industry and government to simplify the forms.  And, for instance, for people where English is not their first language to make sure that things are explained to you in your language, whether you read or if there's a translator there so that you fully understand.

Here's a question we got in from Ed, Dr. Sequist.  He says, I've been an active participant in a Phase I trial for nearly three years.  What is the average length of time it takes for a clinical trial to get to FDA approval? 

Dr. Sequist:

That can really vary.  I don't think there is a standard answer, but a lot of people ask me, okay, doc, I'm going on to this Phase I trial at what paint will I be graduated up to Phase II or Phase III?  And, you know, patients usually don't switch from a Phase I trial to a Phase II or III. The drug development may continue and—continue on its pathway towards FDA development, but patients usually stay in the same trial that they started on.  

The record time in oncology for first patient dosed—interval between first patient dosed in a Phase 1 trial to FDA approval was probably for crizotinib, which is an ALK, ROS and MET inhibitor, where the time was, what, about three years, Janet?  

Dr. Sequist:

But most dugs take a little longer than that.  But when I was training the—what I was taught was that it usually takes 10 years for a drug to get from Phase 1 to approval.  Thankfully, that is not the case anymore.  Most drugs are getting there in three, four, five years.   

Andrew Schorr:

Well, I think, as Dr. Schilsky said the other day, they're really trying to work with the FDA, the NCI, industry to try to do it, but part of it—now, for instance, the government is looking for patient?reported outcomes.  How do things affect the patient in their life?  So, again, doesn't that come into play, too, Janet, that we need to be—we need to be not just part of the trial but we need to be giving information to help with as decisions are made about whether a new drug is a big deal, right?  

Janet Freeman-Daily:

Yeah. Patient-reported outcomes are just starting to be incorporated into clinical trials, and it will be great to have them more involved and for patients to be able to provide inputs that are important to them about how they feel on the drug and how it affects them so that we will have more information about side effects when a drug gets approved. But it's still fairly early.   

But I want to go back to one thing that Dr. Sequist said, that the FDA is trying to put programs in place that will help get drugs approved faster.  So the clinical trial that I'm on has been going for seven years and will keep going even though the drug is already approved because the drug was approved under what they call accelerated approval based on a Phase I, II trial.  Usually the FDA used to require that you had to have a big Phase III trial with hundreds of people where you compare the drug against the current standard of care and get a positive result before you could get the drug approved.  

But now they're making drugs for small populations like ROS1 patients.  We're 1 percent of the non?small cell lung cancer population, and you'll never get enough of us together in one place to do a Phase III trial.  So the FDA has something in place that allows you to approve drugs based on the Phase II trial.  Everybody in this Phase II trial knows they are taking crizotinib.  There is no placebo.  So there are—the clinical trials are evolving.  

Andrew Schorr:

So, Dr. Sequist, let's back up for a second.  So we've had—we have these meetings that you all go to, World Lung meeting, which was in Toronto I think a few months ago.  And you have the ASCO meeting and others you probably go to around the world.  What do you think is a big deal now?  And I know I've seen you on the podium at some of these meetings.  What do you think is a big deal for patients if you take away from some of the key studies that have been—you're releasing data on? 

Dr. Sequist:

It's been a huge year for lung cancer.  I mean, the standard of care has changed in lung cancer in almost every little corner that you look in.  A year ago or certainly two years ago most patients who were diagnosed would get chemotherapy as the first pass treatment.  If you happened to have one of the driver mutations then you would try and get one of those treatments first.  

Now the standard of care has completely changed.  Most patients get immune therapy with or without chemotherapy. There are new approved drugs for ALK and for EGFR in the frontline setting.  There's a new standard of care for stage III lung cancer which we haven't had in 30 years.  There's a new standard of care for small-cell lung cancer which we haven't had in 30 years. There's more evidence from this past year about screening for lung cancer with low?dose CT scans and how this is really effective at diagnosing people earlier and saving lives, potentially especially so in women, we learned at World Lung.  So every corner of lung cancer that you can shine a light into there's been advancements over the last one to two years.  It's really quite amazing.  

Janet Freeman-Daily:

We've also had one liquid biopsy approved where they can use a blood test to determine whether you're eligible to take a certain kind of drug.  That just happened last year I think.  

Andrew Schorr:

So, Jess, you listen to this as a family member.  What hope do you take away from that for your sister?  Jess, could you hear me okay?  

Jessica Wittebort:

Yes, sorry. You're breaking up a little bit, Andrew. 

Andrew Schorr:

I said you hear what Janet and Dr. Sequist were just saying.  What hope can you take away from this because you worry about your sister of the week? 

Jessica Wittebort:

Every single day I worry about her.  And she has to worry about me as well.  I often wonder who the real carer is.  But, frankly, it's, you know, she was given a brutal diagnosis three years ago, and she's kicking.  You know what I mean?  She's kicking.  She's doing great.  She's doing yoga teacher training.  You know, she has good days and bad days, and I just think there's an incredible amount of hope.  

So get your head in the game, get some information.  Get yourself a plan, and you move forward.  And if you don't find the doctor, and it happens all the time, can't find the doctor you can trust or you can get the right answers from, then you keep looking.   

Andrew Schorr:

So here's some questions that we've got in.  And, again, if our viewers have a question just send it to questions@patientpower.info. 

Kevin writes in for you, Dr. Sequist, for many cancer patients there's a learning curve. What are your thoughts on how a patient might know when they're ready to learn and what are the first-stop resources that might give them education they're ready for?  And, Janet, I'm sure you're going to weigh in.  How about the ready to learn?  Because otherwise at the beginning you're drinking—you're terrified, and you're drinking from a fire hose?  

Dr. Sequist:

Yeah, that's a great question and I don't think it's one?size?fits?all.  I mean, patients, it's like all of us.  They come with much different preferences about how they like to learn, about what they want to know, about whether they want to be the primary person learning things or they're going to designate a family member to help them with this information.  

Some people like to learn on the internet.  That can be tricky because there's a lot of bad information on the internet in addition to a lot of good information on the internet.  Some people aren't that into the internet, and they need to learn in?person or through meeting people or phone calls.  Luckily, the lung cancer community has so many support systems and education systems that are out there.  

Janet mentioned a few, LUNGevity and the American Cancer Society has some information on their website, but a lot of academic medical centers also have information on their websites about lung cancer and resources to connect you to learning more when you're ready.  

Janet Freeman-Daily:

So just to add to that, because there are a lot of wonderful, very educational resources on the internet the Lung Cancer Social Media group put together a reference page for vetted online resources.  So if you go to lcsmchat.org under resources and look for what's there you can find a list that includes links under various categories like for those who are newly diagnosed or looking at lung cancer screening or whatever.  And on that list we've tried to pull a sample from all of the various pages we know of, all the various organizations that have good lung cancer information.  So you can start there.   

Andrew Schorr:

Dr. Sequist, I wanted to call out small?cell lung cancer, which I know is the minority of lung cancer.  And Janet referred to immunotherapy there, and you talk about overall about hope. Where are we with small?cell now? 

Dr. Sequist:

Well, there was a very exciting presentation in Toronto at the World Lung meeting and it got published in the premier journal, The New England Journal of Medicine, that same day that set a new standard for small?cell lung cancer, something that—it was actually really moving.  The whole audience burst into applause and cheered essentially when this result came up because for most of us in the audience we had never witnessed an advance in small?cell lung cancer in the course of our career.  So this advance is taking the standard chemotherapy for small?cell and adding immunotherapy to it, and patients had an improved survival when that happened.   

Andrew Schorr:

Okay.  So where do we go from here?  Janet, you're living with it.  You wonder how long your medicine is going to work.  You have one rare subtype.  Other subtypes are being identified and then other people where it hasn't been identified yet.  What do you want to say to people as far as just keeping on keeping on, if you will, and the importance of a dialogue with a doctor, a researcher in partnership?  

Janet Freeman-Daily:

I think the only thing I would make sure everyone does, no matter whether you want to know all the details, whether you want to be involved in research is that it's essential that you tell the doctor what is important to you.  They can do all the rest of it if you need them to, but they can't know whether it's more important to you to try every last treatment no matter how lousy you feel, or whether you would rather make sure that if you can't get out and walk in the woods then life isn't worth living.  They won't know if you don't tell them, so it's important for you as a patient to start thinking about what matters to you in terms of your treatment.  

Likely, you'll be on more than one treatment at some point if you have metastatic lung cancer, and you need to know whether the side effects are acceptable to you.  So even if you don't want to do the research at least be able to tell the doctor what matters to you.  I hope Dr. Sequist that you get some patients who do that.  

Andrew Schorr:

So, Jess, so some people have trouble speaking up for themselves.  I don't think your sister is that way, but you go with her to a lot of treatments and visits.  What would you say to family members to support their loved one, and if their loved one isn't, isn't feeling strong enough to speak up that the family member has permission to do that and that it makes a difference.  

Jessica Wittebort:

Yeah, I think Marisa has her boyfriend, my dad,  Inaudible happy to hem and holler about the questions we have and the questions that she raised since the last time we saw the oncologist.  But more recently she referred to us as the peanut gallery.  I think she's, you know, at the beginning of this diagnosis I was the one that reached out to the ROS1 group, and now she has a pleural effusion and she's trying to figure out all the places that that pleural fluid should go to support research. 

So I think that the journey will change.  I hate that word, journey.  I think the path changes as you go.  You know that old when you come to a fork in the road, you can take the path or whatever it is, and I think you just have to figure out how to be flexible and flex with that journey.  There was—one of the really nice pieces at the Biden Cancer Initiative, I'm terrible with names, the athlete was talking about, you know, everybody talks about diagnosis and the shoot for the cure, but it's that middle, it's that middle part that is so tenuous and you have to get really comfortable with the uncomfortable middle part.   

So I think, gosh, it could be a strain and stress on your loved ones, and I think the communication is just one must of the exercise as you go, and if you can figure out how to lean into that as a carer, as a patient, as a loved one, then you're probably ahead of the curve.  

Andrew Schorr:

Thank you for that, and we wish your sister all the best, Marisa.  My last question is for Janet and then Dr. Sequist.  So it used to be the doctor was in the white coat, and the doctor said we're going to do this, and you were scared, and you went down the hall to have a scan or this or a biopsy, whatever, you just did it. You're just sort of literally the walking wounded, and you and your family were terrified.  And whether you understood or not you sort of nodded your head, and that’s what would happen.  

Dr. Sequist, do you welcome the change?  Do you welcome the change that we're sort of all in this together?  And I don't mean just physicians but I mean researchers too, that this feeling that the patients, the family members, that together, we can solve things.  Alone, it's slower or more difficult?  

Dr. Sequist:

Oh, yeah. It's a very welcome change.  I've gotten a lot of information and education as well as satisfaction from participating in the lung cancer social media group that Janet mentioned.  It's really great to be able to connect with people on Twitter who are researching lung cancer around the world or who are patients living with lung cancer around the world.  And it's a way to get lightning-fast updates about conferences, and everybody working together towards a common goal is a good feeling to be in that pack.   

And I would say to patients out there if you're in a relationship with a provider where it feels more like what you were describing, Andrew, like that you're just being told what to do and you're not being listened to or you don't have the ability to speak up or have your loved one speak up for you, you need to seek out a different oncologist.  Because it's too important.  

It's too important of a disease to be dealing with someone you don't have a great relationship with.  And I would define a great cancer patient/oncologist relationship is one where both people can feel free for express what's on their mind and to listen to each other and just feel heard and feel part of the decision?making.  

Andrew Schorr:

I just think has a tragedy if, as you say, the landscape is changing so much—we have a long way to go, but it is changing so much in welcome.  What a shame if you or your loved one passes away because there wasn't a certain test done or a wide enough panel testing and there was something either approved or in trials that could make a difference to extend life. What a tragedy.  

So, Janet, I'm going to leave the last sort of empowerment message to you, what you want to say to people so that that doesn't happen.  

Janet Freeman-Daily:

I think there's been a lot of good comments in the entire presentation along those lines. I think there's a lot of evidence to show that engaged patients with serious diseases live longer.  That patients who become more educated about their disease when it's on the cutting edge as lung cancer is right now, they have a much better chance of making sure that they're getting the best care.   

But I also want to point out one interesting thing that's evolving as we get these more empowered patient groups.  We actually had a doctor, a researcher approach us, because he had heard that ROS1 patients supposedly didn't have as many brain mets as outpatients did, and that didn't seem right to him.  So we actually worked with him and did a survey on our own patient group and were able to tell him, yeah, it's a lot more common than people are giving it credit for, which stimulated a whole new path of research that's changing the way that people think about the disease.  And if we had not had that open communication between the patients and the researchers, if we hadn't had the empowered patient groups, that survey wouldn't have happened.  So I think this change in paradigm being patients learning about their disease and getting involved in patient groups is making a huge difference.   

Andrew Schorr:

Well, Janet Freeman-Daily thank you for being with us once again.  I hope we get to do this for years and years, Janet, and one day we can say cured.  Wouldn't that be great?  And I'm so delighted to see you and for joining us.  

And, Jess Wittebort, thanks so much for being with us too.  All the best to your sister Marisa with the procedures she has, and, as you say, she's kicking it, and I hope that keeps happening.   

And, Dr. Lecia Sequist, from Mass General, thank you for your devotion to patients and helping lead the way in research so that we can really everybody can get the personalized care they need and hopefully for a long life.  Thanks to all of you for being with us.  I really appreciate it.  

Janet Freeman-Daily:

Thanks.   

Andrew Schorr:

All the best to our audience.  In Carlsbad, California, I'm Andrew Schorr from Patient Power.  Remember, knowledge can be the best medicine of all.  

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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Page last updated on March 19, 2019