Nancy MacMillan, joined by her husband and caregiver, Dan, shares her story of living through two lines of therapy for non-small cell lung cancer.
PUBLISHED May 17, 2019
Nancy MacMillan: Hello, my name is Nancy, and I am here with my husband, Dan, to discuss with you our journey through my non-small cell cancer and small cell cancer. I noticed in August of 2013 that I was beginning to cough quite a bit as I started my year teaching, it and continued through September and October of the same year. I was consulted by a GP [general practitioner], and diagnoses of bronchitis and asthma were made and various antibiotics were prescribed. I continued to get worse, in fact to the point that during the first week in November, the doctor decided it was time for me to perhaps stay home and take another round of powerful antibiotics. However, by the end of that week, as my husband noted, I was unable to climb the stairs in our house, and immediately thought I’d better get to the ER [emergency room] because something bad could be going on.
In that interim I had had a chest X-ray taken, and once they looked at the chest X-ray they said, “You’re coming in the hospital.” At that point I was there for perhaps 3 or 4 days. It was a bronchoscopy and other tests that actually determined, by the day before Thanksgiving 2013, that in fact I did have lung cancer. My husband was beside me the whole time during that and others.
Dan MacMillan: It was a shocking experience to see this happen to somebody who I always considered the healthy one in the family. She always watched her weight, always watched what she ate, always exercised every day or almost every day. She was very thin and was always on my case about my habits and not being fit. A nonsmoker, a very moderate or light drinker, a very careful eater, and a diligent exerciser — to think that she would come down with lung cancer was unimaginable. And it was quite a shock to me and to everybody in the family. But we quickly learned that we had to deal with it as best we could, and that we did. We sought treatment locally and I’m very, very glad that we were able to find the care facilities in our community without having to go out of town. Because through this whole journey we’ve had access to our doctors and providers at the clinics and such, and that’s been really invaluable.
Nancy MacMillan: And through that beginning diagnosis, we did begin here in Charlotte, North Carolina, with the Levine Cancer Institute, which I would like to give a shout-out to. They discovered I did have an EGFR deletion 19 mutation, which actually matched to a drug therapy called Tarceva [erlotinib]. And I began that drug on December 15, 2013, and incredibly within 2 weeks I could tell a difference. Because I really had never felt quite so bad in my life, until I was able to start a treatment. And that particular one was the one that just brought me back to almost normal.
There were side effects, some of which were skin issues, and inside my mouth, I had canker sores and things like that. But it was a small price to pay for the fact that it worked so beautifully. And by my first scan after three months, they were able to say that my cancer was debulked considerably, and I could tell that I was feeling better.
Dan MacMillan: And of course, I had gotten on the internet. Google helped me out tremendously, and I tried to find out as much as I could about the disease and the available treatments. And of course, one of the first things I learned was that the drug, Tarceva — I think the generic name is erlotinib — is called a TKI drug, tyrosine kinase inhibitor. Eventually the patient after 12 to 13 months would become resistant to the drug, and the cancer would mutate. And of course, that happened after awhile. I can’t remember exactly the time frame.
Nancy MacMillan: Because I went longer than the medium for sure, I spent a longer period of time on Tarceva before it did start to mutate.
Dan MacMillan: And you had surgery too.
Nancy MacMillan: Right. I was doing so well on this drug that the oncologist I was seeing suggested that perhaps an oncological thoracic surgeon could remove the lower two lobes of my right lung. In fact, that did happen. Of course, for my pulmonary, I had to go through rehab and have oxygen for a while during that period. But I came back to Charlotte. I did undergo it in Atlanta. I came back and spent about six to seven weeks going through the rehab and got myself where I did not need the oxygen any longer and was able to start walking and making plans to be normal again. So it was maybe six to eight months that I was able to go without any medication except for the surgery.
And it did start to mutate, and that’s when the FDA [Food and Drug Administration] — right about the same time, lucky for me — had approved the drug Tagrisso [osimertinib], which I was started on and will actually be back on in a couple of weeks. And that was able to bring me back and start getting rid of the cancer that had built up in my upper-right lobe.
Dan MacMillan: Yes, and the drug Tagrisso — the generic name being osimertinib, I believe — was great. It had fewer side effects, and she did really well with that. But I kept learning on the internet that eventually it was going to become resistant too. And when it did start becoming resistant, we started seeing progression of the disease resuming. It was time to seek other treatments, and we learned that at that time, after a biopsy, that her non-small cell lung cancer had mutated. I’m not sure scientifically if this is accurate or correct, but I read that it may be just another form of the cancer cell mutating around or becoming resistant to the osimertinib, and it turned into small cell lung cancer, which is of course, supposedly more aggressive and more difficult to treat. But nevertheless, we went back to more conventional therapies.