It's been 13 years since I got the news that changed my life. I can still feel the hot whoosh that swept through my stomach, the way my whole body seemed to hollow out as the doctor said, "I think it's leukemia." I nodded and pressed my lips together, afraid that if I opened my mouth, sobs would come out instead of words. Images of sick, frail, bald me flashed in my mind. Dying me. The sobs did come, but not until I'd stepped out of the doctor's office to call my mom, when I was forced to say it out loud for the first time: "I have cancer." In the days that followed, all the usual noise in my head — What do I wear? Where should we eat? Why hasn't he called? — was quieted by a pulsing refrain of those three words: I have cancer, I have cancer, I have cancer.
The card I'd been dealt was chronic myeloid leukemia (CML), a rare blood cancer that, up until that point, had been ultimately fatal in the majority of cases. Patients with my diagnosis had a 50% chance of living three to five years. Suddenly, everything I'd always assumed I'd do — get married, have kids, travel, write books — was followed by a question mark.
Then, more news: There was a drug, just approved by the FDA, that might put my cancer into long-term remission. The trial results for Gleevec were so astonishing that it was being called a magic bullet for cancer. My doctors were hopeful, even as they warned me that with this brand-new treatment, no one could make guarantees or predict the future.
I started taking Gleevec soon after I was diagnosed, and less than a year after my first dose, I was in complete molecular remission, meaning that no cancer cells could be detected. The plan was to take the drug indefinitely — quite possibly for life. As far as anyone knew, my reprieve would last only as long as I stayed on it.
People always ask if my side effects are bad. They're not, but this is still a heavy-duty drug, not a vitamin.
That's what I've done for the past 13 years. My little orange pill has come to define me; it's as much "my thing" as my red hair. And it's been really, really good to me: Because of Gleevec, I got to fulfill my dreams of becoming a mom, a writer, an activist, and a traveler. But last November, my longtime oncologist, Michael Mauro, called to tell me about a clinical trial he was working on at Memorial Sloan Kettering Cancer Center. It was a study to see whether CML patients like me who'd achieved a deep and lasting remission on Gleevec (or other Gleevec-like drugs) could stop taking it and stay healthy.
I'd actually heard of trials like this going on abroad in recent years, and I couldn't understand why anyone would volunteer for such a thing. I'd think, Why rock the boat? Why look a gift horse in the mouth? Why every other cliché that underscores how lucky many Gleevec cancer patients are to be alive and feel good while countless others aren't so fortunate? In these foreign studies, roughly 50% of patients relapsed when they stopped taking their medication, but most of them were able to regain a deep remission once they started back on treatment. A small percentage had a tougher time getting their disease under control but eventually stabilized. And in case you're wondering — as I did — no one died.
Now here was Dr. Mauro calling to tell me that the trial would be the first of its kind to take place in the U.S. — and that he thought I would be an ideal candidate. "You have all the right stuff," he said, as if this were an American Idol audition we were talking about. Who doesn't like to hear that?
I couldn't explain why, but I felt that hot whoosh in my stomach again, like the one I had at 23. Only this time it was the good kind. Yes, there was fear, but it was mixed with excitement.
I didn't know what to think, or how to respond. But I knew that I was tired — of taking a pill every day, of wondering what this drug could be doing to me longterm, of clinging to my patient status when everything about me screamed survivor. Mostly, I just listened. Dr. Mauro told me I had a few months to consider my decision — the trial hadn't opened yet — and that I should discuss it with my husband, Nick, my parents, and my sisters (my "team," as he calls them). I would have to convince them — not just myself — to take one more leap with me on this confusing, bumpy, undeniably scary cancer journey.
Getting the Team On Board
I brought the idea up to Nick one night while we were cleaning the kitchen. I suppose a mature person would have at least sat him down, but that's not us. He whipped around from the sink and gave me what I can only describe as a dirty look. "Are you serious, Erin? Go off your Gleevec? Please don't say stuff like that," he said. Who can blame him? We had been dating for two years when I was diagnosed, and he's been beside me the whole way. "I won't support your doing that, babe. Sorry."
Later that night while we were lying in bed, he told me about a recurring nightmare. It was the first time he'd shared it with me, but he'd been dreaming this for years. He imagines me dying and leaving him alone to raise our three kids. In one version he moves to New York (we live in the suburbs, out on Long Island) to be closer to his job. That, for some reason, bothered me more than anything else in his death scenario. My babies need a yard! They need the ocean! They need…me. Of course, it didn't take a dream dictionary to know what was playing out in his sleep: a constant anxiety that the cancer would be brought back into our lives.
Nick came to my next appointment with Dr. Mauro a few weeks later, and he was the one asking a lot of the questions. Before Dr. Mauro answered them, he reminded us both that I'd already had a practice run — three of them, actually. In order to get pregnant and have babies, I had to stop taking Gleevec for nearly a year each time. There was the same chance of relapse then, too, but because Gleevec had held my leukemia levels so low, my doctors believed I would do well. And I did. We have three kids: Alex, 7, Nora, 5, and Molly, who will turn 2 in November.
But this was a bigger risk, because the official length of the discontinuation trial is three years — three times longer than my pregnancy breaks. The longer you're off the medicine, the more opportunity the cancer has to regenerate or pull a never-before-seen move. But Dr. Mauro explained why he thought I had "all the right stuff." When you look at the data from trials abroad, the 50% who did maintain remission after going off the drug had the following in common: They'd been diagnosed in the early stages of the disease (that was me), they responded to treatment quickly (check), they were on Gleevec for long periods of time (13 years, baby!), and their CML had been undetectable (mine hasn't made a peep). He also assured us that he would be monitoring me with monthly blood tests after I stopped taking Gleevec, because if you relapse and don't go back on it right away, the leukemia cells can move into "blast crisis," meaning they multiply at a rate that's harder — or even impossible — to stop. He saw my face change when he delivered this news and told me that he would never let anything bad happen to me. That's when I started crying. I knew — we both knew — that no matter how much Dr. Mauro cares for me, no matter how badly he wants to keep me healthy, some things are out of a doctor's control.
Strong Enough to Move On?
The truth is, Dr. Mauro is part of my team too. The MVP, if you ask me. In many ways, he's like family. He and his wife were at my wedding (she's a bridal designer and made my gown!). I trusted him with my life and became the poster child for Gleevec — literally. My face was featured on the drug company's ad campaign, which ran in places like the Wall Street Journal and the New York Times. I'm a board member of the Leukemia & Lymphoma Society. I've shared my story in magazines, blogs, even a memoir. People still sometimes recognize me, say, on the street or the train, and ask, "You're that cancer girl, right?" "Yup," I respond. And my message is always the same: I am lucky. I have a normal life with cancer; others can too.
But as I started to consider the trial, I realized that I don't really know what "normal" is. I started on this drug when I was 23 and single; I'm now 37 with three kids. Yes, I feel tired sometimes. Yes, I am puffy sometimes. Would these things that I've come to accept as my body's default settings be different if I weren't on Gleevec? During my other breaks I was pregnant and feeling pregnant, so I don't know what a drug-free existence is like.
In many ways I'm the healthiest I've ever been. I eat vegetables from my garden, sip warm water with lemon in the morning, limit processed foods. I'm currently training for my second half-marathon. This pill now feels like it's the least healthy part of my routine. Even my body is starting to revolt against Gleevec: Lately, it seems to get stuck in my throat, and the taste lingers, causing a slow burn in my stomach no matter how much I eat. Just thinking about it triggers a faint nausea.
We're not talking about a vitamin. Gleevec is a powerful cocktail of chemicals targeted to kill unhealthy cells. It comes in a hazmat bag and says CHEMOTHERAPY DRUG, TOXIC, DISPOSE OF AS BIOHAZARD across the bottle. There are also a host of unknowns. The longest anyone's been on Gleevec is about 17 years. How would 60 or 70 affect my body? Even Brian J. Druker, M.D., who developed Gleevec (he's considered a contender for the Nobel Prize), said he didn't know the answer to that question. Since I was now faced with a decision about whether to abandon his miracle pill, I wanted to get his thoughts. He told me that yes, he would do the trial if he were me. He also said he'd never run a trial like this in Oregon, where he's the director of the Knight Cancer Institute at Oregon Health & Science University. His patients have said "Heck, no" when he's mentioned it. That 50% chance of relapse — not very enticing. But then came this: "If someone is off treatment for three to five years and their leukemia hasn't come back, they're cured in my book."
I did a little Rocky fist-pump when I heard him say that. I thought about how my being in this trial could mean that 30 years from now a newly diagnosed patient could be told, "Here's your pill. You'll take it for three years, and then you will be done." Done with cancer! I wish someone could have promised me that. Having decades of posttreatment data will help them determine who can safely stop and who can't, possibly with a simple blood test. I am a huge believer in clinical trials. It's how we get new and better medications, sometimes just in time to save lives. The courageous people who volunteered for the original Gleevec trials gave me the option to take a pill to treat my cancer. If my doctors thought I was in a position to do this trial — and that it could help find a cure or advance treatment or make someone else's life a little more bearable — maybe I owed it to the cancer community to sign on.
I take care of my body, exercise and eat well. Popping a toxic pill — even one that saved my life — feels like the opposite of healthy.
I've trusted my doctors from the very beginning, but I've also trusted my gut — and it was speaking to me loud and clear: I was in.
As for Nick, the person whose opinion matters most? He now sees there is nothing cavalier about my decision and is equally concerned about my taking a cancer drug for the rest of my life if I don't need it. These pills are like a great relationship I've outgrown. Hey, Gleevec: It's not you, it's me.
Erin 2.0: The Next Phase
When I first mentioned going off Gleevec to my parents, my dad asked, "Are you really going to do this to your mother, Erin?" My mom came with me to all my appointments in the early years and held my hand as the doctor cranked giant, screwlike needles into my hip bone for my routine bone marrow biopsies. Then, 18 months after I got the news that I had leukemia, my sister Melissa was diagnosed with Hodgkin's lymphoma. She was seven months pregnant and had to endure the most grueling kind of chemo. While those days are behind us — Melissa's a healthy, happy mother of three herself — they never really leave you. I think everyone in my family has found comfort in my daily Gleevec routine, as if every pill I pop is putting some safe distance between the Zammett family and cancer.
As a mother, I understand my parents' desire to keep me safe. The other day, Molly burst into tears when my older kids left for a bike ride with Nick. I picked her up, and she nestled her face into my neck. I whispered, "You're OK, Mommy's here. Mommy's here, you're OK," but I couldn't help thinking, What if the time comes when Mommy isn't here? No one will be OK. Whenever I start to waver, though, I think about how everything that's important to me now — like these three kids I say "Hasta lasagna" to as I tuck them in at night — has come from taking big risks.
On July 7, 2015, I began screening for Sloan Kettering's Life After Stopping Tyrosine Kinase Inhibitors Study (the LAST Study, as they're calling it). That makes me Patient Number One. What happens next? As Dr. Mauro put it, "the crux of this trial is to go home and not take your medication." After three years, the trial concludes, and if I'm still in remission, I'll definitely be throwing a party. Perhaps I'll make Pinterest-worthy shot glasses out of my last few Gleevec bottles, saved for posterity. I've been living this chapter of my life for so long, I don't know exactly where I'll begin the next one. But I hope I can start by reintroducing myself to the world: Hi, my name is Erin. I used to be "that cancer girl," but now I'm cured.
This story originally appeared in the September 2015 issue of Dr. Oz The Good Life.