By Jessica Wapner
Taking Treatment Home
Pills and self-administered injections offer freedom and convenience—but be sure to treat yourself with care
By Jessica Wapner
At-home cancer therapies are certainly on the rise. The U.S. Food and Drug Administration estimates that at least a quarter of the anticancer drugs now in development are oral, and some experts believe it’s an even higher percentage. Many existing chemotherapies are being reformulated into pills and self-administered injections, and about half of all cancer patients are already prescribed oral medicines of some sort.
The convenience and other benefits of having treatment at home cannot be overstated. Pills or home injections mean fewer and shorter visits to the doctor or hospital, and also give patients some flexibility in choosing when and where to take their drugs. In a role-reversal, oral therapies allow you to plan treatment around your life instead of the other way around.
But at-home therapies generate new responsibilities for patients. It has been suggested, for instance, that those who administer their own medicines run the risk of missing treatments or taking an incorrect dose. A study published in 2007 in the journal BMJ
found that nearly a quarter of cancer centers lack proper measures to monitor patients taking at-home therapies. And last year, the Boston Globe
reported that patients often don’t adhere to their prescribed drug regimens for various reasons, including bad side effects.
Clearly, by taking these drugs, you’re not just receiving care—you’re also providing it. So how can you ensure that you give yourself the best treatment possible?
According to Kena Miller, a nurse practitioner in lymphoma and myeloma at Roswell Park Cancer Institute in Buffalo, N.Y., patients should consider a variety of practical measures to help ensure that their at-home therapy goes smoothly. First and foremost is writing down all instructions from your health care team—“something you can tack up on the fridge,” Miller says. Bringing a friend or a relative along to appointments is also a good idea. That way, someone else can be the scribe, leaving you free to listen and ask questions. When you’re faced with a bottle of pills on the kitchen counter, it’s suddenly very important to be completely clear about the exact treatment regimen—With food or without? Morning or night?
—and what side effects to expect.
Integrating your medicines into your daily routine—say, with breakfast—can also be helpful, Miller suggests. To keep things organized, try using a simple weekly pill dispenser. Less well-known is the fact that many pharmacies will blister-pack pills at the request of your doctor, further reducing any chance of error.
According to Miller, all of these tips stem from something crucial: a key shift in health care mentality for many patients. The change is that taking cancer medicines at home calls for a proactive self-care attitude. “You are helping manage this, you are a very integral part of your health care,” she says. And while this role may feel like a burden to some patients, many people feel better when they are responsible for their care, she says.
In fact, taking responsibility for the details of your therapy is not just beneficial—it’s necessary, according to oncology social worker Robin Kornhaber, the former senior vice president for patient services at the Leukemia & Lymphoma Society. “When you don’t have that weekly relationship with a nurse or doctor, you need to be aware of these things for yourself,” she says.
Miller emphasizes that when talking to your doctors and nurses, don’t hold back—especially about side effects, which cause some patients to quietly reduce their medication or to stop taking it entirely. She recommends writing down any side effects you experience, and never hesitating to call your doctor’s office between visits (include the phone number with those instructions on the fridge). Kornhaber notes that forms can be downloaded from the internet to help track doses, side effects and other important details of your treatment. (Find examples at www.leukemia-lymphoma.org
Roswell Park Cancer Institute oncologist Asher Chanan-Khan, who frequently prescribes oral drugs for his multiple myeloma patients and is himself a survivor of thymic cancer, is not concerned that his patients will have problems taking their medicines at home. “In all my years of practice, fewer than 1 percent of patients [have not] followed directions with oral therapies,” says Chanan-Khan. He points to good communication between patients and doctors in achieving successful at-home care: His patients know that they can call him about questions with their home treatment and that he will respond. “There are avenues of communication that we can rely on,” he says.