Caitlin Flanagan, a patient with HER2+ metastatic breast cancer, discusses how her quality of life has been since she began taking tucatinib with chemotherapy.
Sara A. Hurvitz, M.D.: What side effects have you been experiencing? How are you tolerating this regimen?
Caitlin Flanagan: I don’t know which to ascribe to which medication, because I’m on the Xeloda. Is the Xeloda the tucatinib?
Sara A. Hurvitz, M.D.: No, Xeloda is capecitabine. So Xeloda is the chemotherapy.
Caitlin Flanagan: Capecitabine, right. I’ve had diarrhea, but it’s manageable with Imodium. I’m super tired, but my friends always say, “Well, we’re 59 [years old].” I always say, “Well, I’m 59 with treatment.” So that doesn’t go well. I do feel tired and I pace myself, but I don’t know how much is from having 18 years of treatment. I might feel tired from that. It’s the pandemic. Everybody’s tired and grouchy. So I don’t know, but it’s very livable.
Sara A. Hurvitz, M.D.: Has it affected your ability to write, do your work, family life, any of that?
Caitlin Flanagan: No. No problem.
Sara A. Hurvitz, M.D.: OK. What about your emotions and mental well-being with all of this?
Caitlin Flanagan: That’s not very heavy on me because I had that long 10-year time of no progression. And now, there are all these medications. I’m not very troubled. I’m not saying I can’t get super scared super fast if we find something, but I feel like I can go from zero to 100, as you know, very quickly, so I don’t feel like I need to preload my anxiety. I’ll be able to get a full case of anxiety if we get a bad result at some point. But, no, I’m not super anxious right now.
Sara A. Hurvitz, M.D.: How do you define success in terms of treatment?
Caitlin Flanagan: It’s two things. It’s being able to live life on my own terms, defined by me, as long as I can, and with manageable or negligible side effects. That, to me, is success. It’s not so much about what the cancer load is at any one moment. It’s like, “OK, is it stable? Am I alive? Am I able to go for a swim or whatever?” To me, that’s success.
Sara A. Hurvitz, M.D.: Those are very reasonable and realistic goals. Have you talked to anyone about goals of care in your cancer journey?
Caitlin Flanagan: You mean to civilians?
Sara A. Hurvitz, M.D.: Your husband or health care workers or anyone?
Caitlin Flanagan: People don’t like to hear about that, outside of people who are used to it. People in my life don’t want to hear that. But I have people; I have a therapist, I have you. There are people in the cancer world who I can talk to about it. But the people who love you just want to think you are cured, you’re being cured, everything is fine. To be totally honest, it might frighten me if they’re like, “Yes, we need to get ready for this eventual occurrence.” It’s nice to have people seeing me looking well and feeling well and not seeing me as marginalized.
Sara A. Hurvitz, M.D.: Right. Have you felt supported on the clinic side? Of course, I’m asking you, so of course….
Caitlin Flanagan: I’m a good complainer, I would say. Dealing with the pandemic and the telemedicine and all that is really good. It’s not that private, concierge level of a small private practice in Beverly Hills, but I’d more than happily substitute a larger system. Actually, UCLA [University of California, Los Angeles Health] works really well, I have to say. It’s just big. But I love being able to look at my own results in my chart, contact you and contact the nurses. Everybody’s been really great, starting with you on down, saying that quality of life is important as well. You’re not saying, “Don’t bother me, I’m saving your life now,” or whatever the appropriate way of saying that mean thing would be.
Sara A. Hurvitz, M.D.: I’ll remember not to say that.
Caitlin Flanagan: Don’t say that one.
Transcript edited for clarity.