Comprehensive discussion on support for patients receiving therapy for NSCLC, ranging from care team members to education materials to support groups.
Estelamari Rodriguez, M.D., MPH: I wanted to ask you, because your husband was treated with a similar oral drug that also causes some of these traditional side effects, how did you manage? What helped? What can you share with us?
Katina Bland: We had an amazing medical staff that came alongside and partnered with us to manage that. We had a nutritionist who would manage exactly his intake of food. We had a dietitian on board. We had several specialists giving ideas that we hadn’t thought about with regard to how to bulk up things and slow things down and get things back on track, as well as protecting him and hanging on to the very important nutrients that we were able to get inside him. We had a great team of professionals—as well as, of course, our advocates at the Exon 20 Group—assisting us and tirelessly working with us to try to overcome side effects and something else that we couldn’t see while we were down in the trenches every day battling cancer.
Estelamari Rodriguez, M.D., MPH: You make a great point. It takes a village to treat patients dealing with lung cancer because the potential toxicities of the treatment can be ameliorated if you are managed appropriately and have resources to counteract the side effects. When patients have drugs that cause diarrhea, you need to have medications on hand to stop the diarrhea, and you need to be well hydrated. You need to find a way to get the nutrients in. A lot of cancer centers have these resources. I always find that we don’t have enough psychologists and nutritionists for every patient, but now, virtually, we’re able to meet more of our patients. There are a lot of resources online. Where else do you think patients can go if they’re not getting in an appointment? Where can they get more information about the side effects?
Katina Bland: I welcome them to come to our website, exon20group.org. There’s plenty of information there. Within our Exon 20 Group, we pride ourselves on being a bridge and a support to the community. That would be our patients, our care partners, family and clinicians. We have over 10 social media sites where patients can join a community of fellow patients. That’s an opportunity to discover and share insights on side effects and personal experiences. Let’s say a patient says, “I’m struggling with this. How are you guys handling or treating that?” That’s an awesome opportunity and platform for them to share those stories. We have a private Facebook as well as inspire social media groups, and every day we’re posting news, journal articles about patients who are similarly diagnosed and have had NGS [next-generation sequencing] testing. It’s a wonderful opportunity to bring together those in the community for moral support and encouragement, so they don’t feel alone and isolated.
One thing you mentioned is that once you get this diagnosis, it’s very daunting. In some cases, you feel alone and unprepared for the fight. There’s a lot to learn, and there’s a lot to equip yourself for, so you become an empowered advocate and aren’t passive. You’re pushing the envelope and learning and preparing yourself to fight, and fight for those around you and encourage them as well. This also enhances your quality of life, so you’re in community going through this with someone. We provide one-on-one patient and family consultations within the Exon 20 Leadership Group.
Estelamari Rodriguez, M.D., MPH: That’s wonderful. Thank you for what you do, because patients—especially a lot of our patients with EGFR 20 insertion—are younger and connected to social media, and they connect to these networks. Having the support of other patients, who are going exactly through what they’re going through, is incredibly therapeutic. You can get resources, and you can learn how to manage the drugs.
One thing I’ll share with you is that these mutations are rare. I only see patients with lung cancer, and I’ve treated four or five patients who have this specific mutation. On average, community doctors see one every couple of years if they’re looking closely, or one every year if they’re looking more closely. The resources the patients have and the access you give is more experience than the average doctor in terms of understanding how to manage the drug. You being part of the conversation and what you bring into the equation is critical. We see patients in isolation, and you’re sharing information, sometimes internationally. I know some of the advocacy groups are international groups.
Katina Bland: When our patients join the Exon 20 Group, another support we offer them is the opportunity to have an angel buddy. Our beloved angel buddies are fellow patients in the Exon 20 Group who partner to provide peer-to-peer support with patients and their families. It’s been incredible, the impact that our angel buddies have had on other families and patients. We’ve experienced that with our beloved couple, who came along and walked with us on our journey, experiencing what we were experiencing about our cancer diagnosis and giving us insights. We knew that at any time, day or night, we could pick up the phone and call to see how they were experiencing what they were experiencing and if that resonated with my husband, so we could get tips from them. It’s been a tremendous support.
Estelamari Rodriguez, M.D., MPH: That’s very valuable. It’s not for everyone. Some patients are private and don’t want to have their experience mirror someone else’s experience. But having access and information to someone who’s going through the same experience is very valuable.
Transcript edited for clarity.