The Emotional Side of Personalized Medicine

When this patient’s lung cancer treatment went from intravenous chemo to a twice-daily pill, it wasn’t the relief you might expect.

By Ide Mills

I have advanced, ALK-positive non-small cell lung cancer with disease in my lungs, lymph nodes, and bones.

Luckily, there’s a pill for that.

You would think that taking an oral therapy targeted to my specific type of cancer would make me elated. Compared to chemotherapy, it is more effective, has fewer side effects, and fits easier into my schedule.

Rather, the experience put me in a tailspin. I wrestled with issues of control, how active a role I take in my healthcare, and whether I was ready to be public about having cancer.

Like many people diagnosed with cancer, for the first two and a half years, I lived in three-week cycles. Every 21 days I would see my oncologist and receive chemotherapy. Working as an oncology social worker, health educator, and communication strategist for more than 30 years, I knew it made a difference to be an active partner in my cancer care. The more I know, the more I feel in control of a situation that is irrational. I want to understand the disease and the treatments, as well as what else I can do to help myself live well with cancer.

My activity includes reading cancer articles, searching the internet for credible medical updates, going for treatment, tracking my symptoms and side effects, asking my doctors and nurses questions, thinking about what this all means, and talking a lot. Note that I said “going for treatment.” But today, with more than one-fourth of cancer therapies in pill form, it is also accurate to say “taking my medicine.”

Herein lies my struggle.

Intravenous chemotherapy was a visible experience. Along with the treatment came the barrage of side effects — some worse than others, some transient, others permanent. This was the part of the cancer experience I knew all too well when my professional and personal worlds collided. My family and close friends knew when I was going for treatment, and the flurry of questions and support would follow. I talked, and they listened. I described my symptoms, what chemo I was on, how often I would receive it, how it made me feel, how I managed the side effects, when I was getting scanned, and what the results suggested. I recounted what my nurses and doctors said, referenced my cancer team regularly, and told stories about my cancer experience. I saved my fears and macabre thoughts for a select few.

Controlled public sharing — I deluded myself by thinking I could do just that. While I shared my cancer life with many, including my work colleagues, I wanted to keep the news from my community and distant relatives. I did not want the head-tilting sigh you get when people hear you have stage 4 lung cancer. Being in control and holding on to some degree of privacy were my goals.

The night before each cycle began, so, too, did my routine. My husband would name the music genre for my chemo party, knowing full well this was no party. I stayed up late as the result of premeds and anxiety, but I used my time efficiently, either doing work or blogging. Day one of every cycle: I worked in the office until it was time to dash off to the cancer center. Hurriedly, I gathered my computer and folders and shared last-minute thoughts with staff, knowing I would not be back in the office until the next Tuesday or Wednesday. “I’ll be at the cancer center. Call if you need me.” Or, “What time are we doing the conference call?” Family and friends also knew when I was going for treatment. “Do you need a ride? Do you want company?” Everyone checked up on me in the days that followed. As treatment continued, recuperation stretched from three to five days or a week. I received calls and texts daily. “How are you? What can I get you?”

The three-week cycles continued for two more years, as did the outpouring of support. Without the love and attention, IV treatment would have been unbearable. I deeply appreciated everyone listening to my stories or reading my blog. Talking with my private audience helped me deal with my cancer experience.

My story may seem similar to the thousands written before mine. What is different is what I experienced after my cancer progressed. I chose to go on a clinical trial consisting of Xalkori (crizotinib), an oral therapy targeted to my specific type of lung cancer, and an experimental drug given by IV. The new protocol meant new routines, new side effects, new details, and new stories. The scans showed remarkable results, with significant shrinkage of the tumors. I was actively controlling my cancer again.

A few months into the new treatment, lab results forced me to come off the trial. It was a side effect of the experimental drug (the cancer did not progress). Rationally, I was disappointed, and emotionally I felt defeated. The cancer would gain control. Even though I left the clinical trial, I stayed on Xalkori, but it was hard to feel excited that I would only need to take a pill twice a day. While oral therapy would give me more flexibility, how could I take back the reins with just a pill?

I had not yet adjusted to the concept of oral cancer therapy. Family and friends hadn’t either. They continued to ask me when I was getting my next treatment.

The responsibility now is mine. I know that. Even though I developed educational programs to help people like me understand the importance of taking their oral cancer medicines as prescribed, it is hard for me to believe that this pill is potent enough to keep the cancer in control. There must be more I can do. Change my diet, exercise, reduce stress? Check, check, check. Am I being active enough? Because I have so much more time taking an oral treatment, these are the questions that fill my day. Anxiety too often fills the void.

The thoughts are haunting: This is cancer, and cancer kills, so I need the big guns to treat it.

Not that I am looking for treatment with harsh side effects, but maybe there is a bit of the no-pain, no-gain theory I am subscribing to.

Thankfully my doctors don’t subscribe to that theory. They regularly point out that my side effects are more than I should have to experience. Xalkori has its share of side effects — some transient, some not — but I feel stronger and healthier. As I’ve adjusted, my schedule now includes working, going to the gym, seeing friends, and cooking nutritious meals. Okay, I don’t get to the gym every day, but I get there more than when I was on an IV chemo regimen. With the help of my social worker, I have come to accept that I am taking enough of an active role in my cancer care — medically and non-medically.

The routine is more private. There are fewer stories to tell. I’ve found, though, that the care and compassion from my family and friends remain a constant. I may talk less about the cancer and my treatment, but they still ask how I am doing. I think that is partly why I was worried about being on an oral therapy. Would people forget that I get frightened every time I have a scan? I face tremendous anxiety every 12 weeks, even if I don’t announce it or report my results. While I am responding well to treatment and feeling healthy, I don’t walk my family or friends through all the details. It’s more of an update — part of the conversation, not the focus.

It would be easier now to be private about my cancer, but I have decided to be completely public. It is time for me to help others and share my perspective on living with a chronic, life-threatening illness. The face of advanced lung cancer has changed, ever so slightly. I hope my face, physical stamina, emotional strength, and voice can give hope to others living with cancer and facing new emotional challenges with the advances in targeted treatment. My tailspin has passed, and I am glad to be taking a pill twice a day.