From Patient to Author: Emphasizing Shared Decision Making in NSCLC

Nancee Pronsati was completing a half-marathon in 2016, but it was a challenging one, as she coughed through the entire race. After struggling with chronic bronchitis and coughing for nearly 2 years (and doctors telling her it was various infections), she finally received her diagnosis of stage 4 ALK-positive non-small cell lung cancer (NSCLC).

Fast forward to today, and she’s turned her diagnosis into an advocacy movement. She currently serves as vice president of ALK Positive, Inc., a patient-founded and -driven nonprofit organization dedicated to improving outcomes and quality of life for patients with ALK-positive disease. Most recently, she’s added the term lead author to her repertoire, as she, along with several lung cancer specialists and other ALK-positive patients, published the paper “Managing Lorbrena [lorlatinib] together: an overview and practical guide for patients by ALK-positive NSCLC patients and medical experts” in the journal Lung Cancer.

The paper is meant to be a guide for patients diagnosed with the disease, as well as for practitioners who may not have the experience with the third-generation tyrosine kinase inhibitor (TKI) to manage its side effects and maintain quality of life. The paper also aims to empower shared decision making between patients and their clinicians.

“Being diagnosed with cancer can be lonesome and scary,” Pronsati said. “Even if you have a fantastic support system, they don't all understand and this is probably applicable to any kind of cancer, as many of the questions in the paper could be applicable to at least help people understand shared decision making. By joining a support group, looking for resources, reading documents like this, you can control so much of your own journey through this and at least be informed, educated and make it easier on yourself and your family.”

In an interview with CURE, Pronsati shared her ALK-positive NSCLC journey, the ins and outs of the published patient guide and how it is impacting others in the community.

CURE: Please describe your diagnosis and journey with ALK-positive NSCLC.

Pronsati: It started in about 2014, which is weird for me to think back that long. I started to have chronic bronchitis and coughing and because at the time, I was relatively young and had not been a smoker ever, [my doctor] assumed it was pneumonia, bronchitis, or various kinds of chronic infections. I took a lot of antibiotics, and then finally, in 2016, I completed a half marathon, which I used to do pretty frequently, and I was coughing through the whole entire thing. I was with my sister, and she said, “You need to go find a real doctor.” It's not that I wasn't seeing real doctors, but there wasn't a lot of familiarity at that time with lung cancer in younger people who also had not smoked.

Finally, a doctor sent me for an x-ray, and I already had stage 4 lung cancer and innumerable lesions on both lungs. I was very fortunate to be at a great hospital where they sent my tissue out for biomarker testing right away. I was lucky enough to have ALK-positive lung cancer; I've been on a TKI ever since. I have been one of the extremely lucky people; a lot of the oncologists call it "good ALK" because I have had a very long run on TKIs.

What has the course of your treatment for ALK-positive NSCLC been like?

I was originally on Xalkori [crizotinib], which was the only one available at that time for first-line treatment, and that lasted about 1 year. Then I had progression to my brain, which is very common progression for people who started on [Xalkori], who did not have any blood–brain barriers to protect the drugs to get to there. Then I went on Alecensa [alectinib]. Interestingly, since I am doing this paper about Lorbrena, I've been on Alecensa this entire time for eight years. I have had nine years of lung cancer and only changed TKIs one time. I have been extraordinarily lucky, that is the only answer that I have. Of course, science contributed to that, but I also have had a pretty lucky situation.

What prompted you to create this guide on Lorbrena for patients with ALK-positive NSCLC and healthcare professionals?

Part of what I do for ALK Positive, Inc. and what I have been doing for years, is aside from the very modest goal of finding a cure, we want to help extend the lives and the quality of lives of our patients. Aside from progression itself, side effects of TKIs are a big deal, and they impact people's lives a lot—and even their ability to stay on a TKI, which extends their life even more.

For me, whichever drug it was, is agnostic. I just felt like we need this information to get out there on how to help people manage side effects. It was Pfizer that came up with the idea originally, and they started to talk about how much they would like to incorporate the voice of patients into the paper. That was groundbreaking. I'm sure other organizations have done it, but we have had so much great feedback on the voice of patients. There were multiple patients involved throughout this paper and helping people understand how we feel about side effect management.

What are the top takeaways from this Lung Cancer journal article for patients and healthcare professionals?

This particular document is good because it gives people tools, either to take [for themselves] or provide to their oncologist. It has a lot of question-and-answer sections that are there to help drive shared decision making. What I thought was critical about that is, if you had a community oncologist or a local oncologist, and not necessarily an ALK-positive specialist, you would know how to ask the questions about your side effects and drive them to the answers that they might not have come to on their own.

Not everyone is going to have done all the research on the CROWN study and understand all this. The tables in there help people understand what the side effects are, how many people they do impact, and at what point on your journey they often will hit, so you kind of have a better idea of expectations.

A third [takeaway] would be many of those [side effects] can be managed. They can be managed without stopping Lorbrena. They can be managed through doses and efficacy of Lorbrena remains, even if you lower your dosage often, or even take a break from your TKI—obviously, under the direction of your oncologist. [This is] the same with many of the other impacts, like the central nervous system, weight gain and [CNS]. Most, if not all, of those things can be managed without stopping Lorbrena, as long as it's still working for you.

Dose adjustments and/or treatment breaks with Lorbrena are great points to make with patients. The drug may be working, but patients might be suffering from related toxicities, so they might not want to speak up to their provider for fear of them changing or discontinuing therapy, or lowering dosage.

That is one of the main things that we focused on in this: understanding that you can have that open conversation and bringing these tools with you because they may not know. Your doctor may automatically think, "I can't lower the dosage. The recommended dose is 'X'," but it's, "No, let's try it down 25 milligrams." Or, “Here are some things to help manage CNS effects; here's how long they typically last. How can you help me through that?” People are so afraid to stop.

On the other side of that, sometimes the impacts are so terrible and [patients] feel so bad, so in specific cases they do want to stop, but that doesn't have to be the option. That doesn't have to be your path. You can try a lot of things before you stop.

You have been on Alecensa for the majority of your treatment, but you became an expert on Lorbrena for this paper. How did you educate yourself?

Because I belong to a support group, and have since 2015, many of these people are my personal friends, and especially in my job as vice president, I interact with so many patients. I had a strong anecdotal background on what people were experiencing and could bring that flavor. The other two patients who participated were Lorbrena-treated patients. Some of these [effects] do occur on alectinib, but it was interesting for me, coming from the perspective that I hadn't experienced it, to hear the conversations and be able to sit to think, "What if I were new?” Because that's what this guide is for: it is for someone who's never taken Lorbrena. I thought in some ways that I would be the target audience for it, and it helped me. You typically only hear the negative things about any medication. This was reassuring, even for me, to talk through how this could change someone's trajectory on Lorbrena, because that is likely the next medication that [I would] take.

What does it mean for you to be published in an academic journal? 

I didn't think of any of that when we started this, because I don't think I understood that the result would be this kind of publication that got a good amount of press in the lung cancer world. For me, it was exciting. I was participating with renowned ALK-positive lung cancer oncologists from all over the world, from Asia, Australia, Canada, the United States as well as our director of clinical research.

As a patient, that was a little bit overwhelming, honestly, but it was nice the way they appreciated and took in all of our input and treated us as equal members of the paper. It felt like everybody was listening, each coming from our own viewpoint of the medicine and what we were trying to provide. I'm just happy to have provided something that is genuinely memorable and useful for our patients, because some things that we do aren't, some things we do are a thing you check off, and it doesn't really go anywhere. This one has had meaningful impact. It's been important and it's impacting people who don't have access to our key opinion leaders.

Reference

1. Nancee Pronsati, G. Liu, T.M. Bauer, et al. Managing lorlatinib together: An overview and practical guide for patients by ALK-positive NSCLC patients and medical experts. Lung Cancer, 2025.

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.