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Lung Cancer Patient Says Clinical Trials Are Her Lifeline

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Published on June 30, 2020

Can clinical trials help lung cancer patients? What are experts saying about clinical trials during COVID-19? Should patients still participate?

Hear directly from lung cancer survivor Linnea Olson, who says, "Clinical trials are my lifeline." A 15+ year survivor, Linnea says she is counting on "medical research to catch up with my cancer, get a little bit ahead of it." Linnea is joined by Dr. Heather Wakelee of Stanford Medicine and Amy Moore from the GO2 Foundation for Lung Cancer. Be inspired by Linnea's hope and encouraged by what the experts have to say about the pace of research and new treatment options.

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Transcript | Lung Cancer Patient Says Clinical Trials Are Her Lifeline

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:

So, Linnea, a little bit about your lung cancer story. You were diagnosed when with what?

Linnea Olson:

I was diagnosed in April of 2005 with stage IB non-small cell lung cancer. I was-

Andrew Schorr:

Later, much later, it was thought it was learned that you were ALK positive, right?

Linnea Olson:

Correct. I mean, ALK had not been identified yet as an oncogene, although it is interesting to note that in 2005, I was tested for EGFR, that had recently been identified. And I lucked out and got a phenomenal oncologist, because he felt I fit the profile, but of course, I was negative for that and it would be three years before I would find out I was ALK positive.

Andrew Schorr:

Now, Dr. Wakelee just mentioned clinical trials. Do you believe being in clinical trials has prolonged your life?

Linnea Olson:

There's no question, because when I was diagnosed in 2005, there were so few options for treatment for lung cancer, and my original oncologist compared it to baseball, he said, "Three strikes and you're out." And I struck out two right away, radiation was not an option. So, we just did watch and wait.

By the summer of 2008, I was restaged IV and asked if it was time to get my affairs in order, and the answer was yes. When I said, "How long?" The response was three to five months. So, I truly believed I was going to die, because there was nothing else to do. And that's when a couple of months later I found out that my restaging biopsy had been submitted for further genetic testing and had come back positive for the EML4-ALK translocation. As luck would have it, there was a phase I clinical trial at the very hospital where I received my care. All I found out about it on that particular day was that one other person had enrolled and had quickly died in part because of the trial drug. But I knew that if I didn't enroll, I was definitely going to die. If I did enroll, I was hopeful that it might extend my life for several months, which was not an unrealistic expectation then, certainly not years.

Andrew Schorr:

Right. And here we are 2020, you're still with us and you are in yet another trial, right?

Linnea Olson:

Yeah. I mean, clinical trials are my lifeline. Because of just the chance of timing when I was first found to be ALK positive, and when I did my first trial, each time I started trial, it's with knowledge that there is no next thing. But I just keep counting on medical research to catch up with my cancer, get a little bit ahead of it.

Andrew Schorr:

Well, Linnea, you're the perfect person to ask this question. So, you, like me as a cancer patient as well, have a worry about interaction, if you will, with the hospital where maybe the trial is, or getting a bunch of tests that you have to go for, et cetera, in this time of the pandemic, but yet we're living with the cancer. So you're still propelled to be on the trial because that's your lifeline, right? Linnea, what would you say for people when they're hesitant maybe about being in a trial or going to the clinic, et cetera?

Linnea Olson:

Well, it's kind of like the decision I made back in 2008. I know my cancer will kill me. COVID-19 might. So I have no choice but to address my cancer. It has been a rapidly changing landscape. Initially, I was quite worried about the possibility of triage and that as somebody with lung cancer I would not make the list as far as getting a ventilator, should it be needed. Fortunately, that did not happen. However, everything at the hospital changed. I was in what is called the Tremeer Center for Targeted Therapies. A unit specifically designed for phase one trials, and it got turned into a COVID-19 unit. So, we've just all had to adjust and adapt, but I like to feel that in every crisis there's opportunity. And I think we're all going to learn a lot from this.

Andrew Schorr:

Amy, what do you want to say to our listeners so they get the right care? You mentioned about the LungMATCH Program, you have it Go2. Linnea underscored about really having a consultation if you have advanced lung cancer with ideally somebody who's understands all this research and new approvals, having the right team. Is there anything else you want to say so that families and patients truly can have hope? Because you see the pace of research.

Dr. Moore:

Absolutely. Hope is real. We have our living room that we do monthly, where we bring together experts on different topics in lung cancer. Pre-COVID, we had, at times, 50 people in the room and thousands watching online, and it is palpable, the hope is there. But I think first and foremost, we want patients to know, don't go it alone. Find a community, whether it be through Go2 or it'd be online. I interface regularly with the different patient groups, ROS1ders, EGFR Resisters, PALK-positive. They have mobilized and they've come together to support one other, to educate each other. And so, know that there are people out there who want to help. We stand by ready to do that, ready to make those connections, we have so many resources available. And there's not just Go2. There are other advocacy organizations, and especially now in COVID, we've really banded together to try to provide a unified message to our community of what they need to know right now as they navigate the challenges of this pandemic.

Hope remains, it hasn't gone away just because COVID has come here to us. So, yeah, just know that you're not alone. I think that's the biggest thing.

Andrew Schorr:

So, Linnea, you are very active online. You correspond with a lot of people. So what would you say to people who maybe have been kind of in the shadows about connecting with others, and what it's meant for you?

Linnea Olson:

Oh, it's made a world of difference for me. When I was diagnosed back in 2005, it was actually very difficult to find others and support groups, and there weren't very many blogs, there wasn't this online community. But by 2008, I ended up joining an online support group and finally started to connect with others, and realized that even though I had been, I think, rather afraid of doing this in large part because of our high mortality rate and you end up comparing yourself to others, that it was actually extraordinarily empowering and also such a privilege. I mean, if there is a good part of what has happened to me, this is it, the people, the people that I have come to know whether it's my care team or others with lung cancer, and of course their support teams. So, I highly encourage people to seek out that support. Like Amy said, it's too hard to do alone.

Andrew Schorr:

Well, we wish you well, of course, Linnea.

Linnea Olson:

Thank you.

Andrew Schorr:

Thank you so much for being in trial after trial. We hope there continues to be options for you and that we can check in months or even years from now, Linnea.

Linnea Olson:

Yeah, I'm going for years.

Andrew Schorr:

So, Heather Wakelee at Stanford, just to wrap up, it sounds like we are ever more in the time of lung cancer, and even in this pandemic time where you're trying to understand it better for lung cancer patients, a time of personalized medicine. So, the lung cancer is a moving target, the driver mutations may change, or new things may be discovered, you have a new recipe that may change for that patient all the time. So, it sounds like patients need to have a very active dialogue with their doctor, "Where are we now? What could be next? And what are we watching for?" Right?

Dr. Wakelee:

Exactly. It's certainly not a one-size-fits-all. It is a very much a personalized treatment, and it really needs to be a partnership with patients educating themselves, working with their physicians to understand what are the options, why are we choosing this options? What are the other choices if I were to go on a trial? What if I was willing to drive and go somewhere else? Is there a different study? I mean, those sorts of questions so that each patient is aware of what the options are, and can then work with their care team to be on the best possible choice. And I want to make sure the listeners hear the message of hope as we look at all of the new options that are available as the science continues to help us understand why certain treatments work or don't work and when they don't work what might work, and just to see how rapidly that that progress is being made is really, to me, amazing.

Andrew Schorr:

Well, what I like to see is you all, and I'm including you, Linnea, are our angels. Linnea, you're an angel for being in trials and helping pave the way for other people, not just yourself. Dr. Wakelee, leading research at Stanford and your devotion to lung cancer patients. Amy involved, your whole background in basic science, and then helping bring that knowledge to the Go2 foundation. You are angels, and thank goodness there's more to talk about. I'm Andrew Schorr. 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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