Janet Freeman-Daily: Patient-to-Patient Power

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What is it like to be a four-year NSCLC survivor?  Award-winning blogger and co-founder of the trending #LCSM chat on Twitter, Janet Freeman-Daily knows.  In this video, Janet and Andrew discuss Janet's current participation in the University of Colorado's NSCLC ROS1+ Phase I trial, as well as the 'takeaways' of being a cancer survivor.  Listen as Janet speaks from the heart, explaining that part of hope is "becoming comfortable with uncertainties.”

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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:

Hello.  I'm Andrew Schorr in Denver, Colorado, where people are gathering for the World Conference on Lung Cancer, physicians, researchers, but also people living with lung cancer, and with me now is someone who has been living with lung cancer for four years now.  That's Janet Freeman?Daily, who is from Seattle, but actually you're in a clinical trial for your type of lung cancer here in Denver.   

Janet Freeman?Daily:

That's correct. 

Andrew Schorr:

So you sought that out.  

Janet Freeman?Daily:

I did.  I learned about this—I learned about clinical trials, I learned about my mutation all from patients online.  My—when I learned from—about ROS1 online the other patient was saying, well, you have a lot of the characteristics, you're young, adenocarcinoma, negative for the other mutations, you might have ROS1.  And I asked my doctors in Seattle about it, and they had never heard of it.  The paper had like come out two months before. 

So I ended up contacting the University of Colorado in order to do the Lung Cancer Mutation Consortium, and they tested me for 10 different gene mutations, which I didn't have. And then after I had my second progression I contacted them again. And they just developed a test for ROS1, and they had some of my slides left and they tested me.  I was positive, and they said, “We have an opening in our trial,” and I said, “I'll be there in three days.”  

Andrew Schorr:

And how has it worked out? 

Janet Freeman?Daily:

It's worked really well.  The first two months I had to be here every two to—two weeks, and I just stayed with my nephew, which was convenient.  And then for the next eight months it was every four weeks, and then after that it's been every eight weeks.  

Andrew Schorr:

So you've been in a trial how long now?  

Janet Freeman?Daily:

Coming up on three years in November.  

Andrew Schorr:

And let's face it, many people with lung cancer don't live that long. 

Janet Freeman?Daily:

I've been very fortunate.  After two different combinations of chemo and radiation and two progressions, I got on this trial, and on my very first scan I was no evidence of disease, and I've been there ever since.

Andrew Schorr:

Wow. 

Janet Freeman?Daily:

32 months and counting. 

Andrew Schorr:

We should mention also that your lead doctor, his first name is Ross.  

Janet Freeman?Daily:

Yes.  A few people have noticed the irony.  

Andrew Schorr:

Yeah, well, great doctor and dealing with a gene in what seems to be an effective way.  So let's have some takeaways for other people who are watching.  First of all, you connected with other patients, and I have to say I did the same thing in leukemia, and that directed me to a clinical trial that I believe saved my life so far, for many years.  So that patient?to?patient power can be life?extending. 

Janet Freeman?Daily:

Well, I'd be dead without it.  I was—I had a very aggressive cancer that grew three inches in three months. So if I had not found this, I would have been gone a couple years ago.  

Andrew Schorr:

We should point out that you've never been a smoker, that's not been a factor at all, but whether someone smokes or not they still have lung cancer, they can connect with other people, and now we've got these genes that are being identified like yours that was new.  

Janet Freeman?Daily:

Yeah.  

Andrew Schorr:

So it's a whole changing landscape.  

Janet Freeman?Daily:

There [are] at the moment 17 actionable mutations, which means either you can get an approved drug for it or there's a clinical trial for it.  It's very important for metastatic cancer patients to get a genomic profile of their cancer.

Andrew Schorr:

Hmm.  So do you feel like maybe—I mean, we wish it for many more people—but history is starting to be rewritten with lung cancer?  

Janet Freeman?Daily:

There's a huge change.  We have had more new treatments approved in lung cancer in the past four years than we had in the previous four decades.  

Andrew Schorr:

But, Janet, still, do you ever worry about that creating false hope for some people?  Let's face it, we still have so far to go.  You have a targeted therapy that right now is working for you, and I've met other people who were near death and got in a clinical trial, and I met one lady who is playing golf. 

Janet Freeman?Daily:

Uh?huh. 

Andrew Schorr:

And yet there [are] so many other people where it's a fatal condition, and we don't know what's going on with their lung cancer. 

 

Janet Freeman?Daily:

That's true.  Immunotherapy is offering some hope.  I'm a little concerned that there's been so much hype around immunotherapy that everyone is convinced that all they have to do is get immunotherapy, and they'll be cured.  But at the moment without selecting patients from certain biomarkers, immunotherapy works for about 15 to 20 percent of patients, which is about the same as chemo. 

So, unfortunately, we can't guarantee effective treatment for everybody, but there [are] just more options now than there ever have been, and more people are being able to find treatment. 

 

Andrew Schorr:

Now, I spoke to one of the doctors and we were talking about clinical trial participation, and he said his experience is people fall into three groups.  People say, “I'm looking for a trial, very actively,” say, “Well, maybe I'll consider,” or say, “I don't want to be a guinea pig.”

Janet Freeman?Daily:

Mm?hmm.  

Andrew Schorr:

What would you say from your perspective about more people considering being in a clinical trial?  

Janet Freeman?Daily:

Clinical trial is treatment.  It is an option.  There are different levels of risks associated with clinical trials.  When I was first looking into them, I thought I only want to be in a Phase III trial, which is the last stage where they've already figured out that it's safe. And they figured out the dose, and they've got an idea whether it's effective. 

But I'm in a Phase I trial right now.  Things are changing in the way the trials are done, and the drug that—when I started on my drug it had already been proved safe for a different type of cancer, so it wasn't the same as starting a drug with absolutely no information. 

So it's important to find a clinical trial that as much as possible matches the type of cancer you have, and then you have to know how much risk you're willing to assume because yes, there's always a risk.  There's no guarantee you will be cured.  You are guaranteed that you're going to contribute to the body of knowledge to help future lung cancer patients, but you might also find that the treatment is very effective. 

Andrew Schorr:

Janet, how do you view the future, near?term or even a little beyond, that—in that you didn't know if you'd have a future, but also we don't know how long these medicines will work.  You're in a trial, and it's working for you.  Will it work tomorrow, next week, next month, next year?  

Janet Freeman?Daily:

I was just having a discussion with this with some other metastatic patients that are here at this conference with me, and we were talking about the need to become comfortable with uncertainty.  There are no guarantees.  I'm very fortunate in that this particular drug seems to be working on average twice as long as some other drugs have.  I know another patient in the trial who has been on it four years and is still doing well.  So I'm hopeful in that respect. 

I have a friend who is on a different targeted therapy, that—actually, she has a different mutation.  She's been through three clinical trials and a variety of chemos, and she's survived 10 years with something that, you know, should have killed her quite a while ago. 

But none of us are guaranteed what tomorrow looks like.  I found that no matter how long I've been around with no evidence of disease, when it comes scan time I still get irritable and grouchy.  Even if I don't consciously think I'm upset, my body knows that there's something major coming up, so it's just a matter of distracting myself. 

And, you know, I really had to think about why am I here—having metastatic cancer is really good at making you wonder why you're here—and why I survived what other patients didn't, and my answer at least is becoming an advocate, sharing, writing, sharing the information for other people.  And then when I get at the point where I have a major issue coming up I just kind of bury myself in my advocacy, and that gives me a distraction, and I feel like at least I'm making a difference in the time that I have. 

Andrew Schorr:

Wow.  Thank you for all you do.  It sounds like you're very into paying it forward.  Somebody did that for you. 

Janet Freeman?Daily:

Yes.  

Andrew Schorr:

Hey, it could be ROS1, and you're doing that now for others.  

Janet Freeman?Daily: 

Yes.  That's what I'm hoping. 

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 November 10, 2015