How Are Lung Cancer Patients With Rare Mutations Making a Difference in Research?

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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(sp?) 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, which was a really big deal for her.  And we're all kind of awestruck, 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's 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.  

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.