Taking Pills for Cancer Treatment: Tips for Staying on Your Plan

ADHERENCE
Taking Pills for
Cancer Treatment:
Tips for Staying
on Your Plan
Presented by
Ronald H. Blum, MD
Albert Einstein College of Medicine
and Beth Israel Medical Center
Patricia Spicer, MSW
CancerCare
Carolyn Messner, DSW
CancerCare
Learn about:
• The importance of taking your pills on schedule
• Practical tips for sticking to a treatment plan
• Communicating with your health care team
• The importance of a support network
Help and Hope

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CancerCare is a national nonprofit organization that provides free, professional
support services to anyone affected by cancer: people with cancer, caregivers,
children, loved ones, and the bereaved. CancerCare programs—including
counseling, education, financial assistance, and practical help—are provided by
trained oncology social workers and are completely free of charge. Founded in
1944, CancerCare provided individual help to more than 97,000 people last year
and received nearly 2.1 million visits to its websites. For more information, call
1-800-813-HOPE (4673) or visit www.cancercare.org.
Contacting CancerCare
National Office
Administration
CancerCare
Tel: 212-712-8400
275 Seventh Avenue
Fax: 212-712-8495
New York, NY 10001
Email: info@cancercare.org
Email: teled@cancercare.org
Website: www.cancercare.org
Services
Tel: 212-712-8080
1-800-813-HOPE (4673)
If you are a health care professional interested in ordering free copies of this
booklet for your patients, please use the online order form on our website,
www.cancercare.org, or call 1-800-813-HOPE (4673).

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ADHERENCE
Taking Pills for
Cancer Treatment:
Tips for Staying
on Your Plan
Presented by
Ronald H. Blum, MD
Professor of Medicine
Albert Einstein Col ege of Medicine
Director, Cancer Centers and Programs
Beth Israel Medical Center
New York, NY
Patricia Spicer, MSW
Breast Cancer Program Coordinator
CancerCare
Carolyn Messner, DSW
Director of Education & Training
CancerCare
The information in this booklet is based on the CancerCare Connect®
Telephone Education Workshop “The Importance of Taking Your
Pills Everyday,” which took place in October 2007. The workshop
was conducted by CancerCare in partnership with the American
Cancer Society, American Society of Clinical Oncology, Association of
Clinicians for the Underserved, Association of Oncology Social Work,
Black Women’s Health Imperative, Cancer Patient Education Network,
Education Network to Advance Cancer Clinical Trials, Intercultural
Cancer Council, Multinational Association of Supportive Care in
Cancer, National Center for Frontier Communities, National Coalition
for Cancer Survivorship, Research Advocacy Network, and The
Wellness Community.
INTRODUCTION
page 2
FREQUENTLY ASKED QUESTIONS
page 12
GLOSSARY (definitions of blue boldfaced words in the text)
page 15
RESOURCES
page 16
This patient booklet was made possible by an
educational grant from Novartis Oncology.

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For effective treatment, it’s
important to stick with
the prescribed routine for
taking your pills.
Currently, only five percent of cancer treatments are taken
at home, in pill form. The rest are usually available only in
a hospital or clinic, where they are given intravenously
(through a vein). But that is changing dramatically. Most of the
newest drugs being developed to treat cancer are targeted
treatments, which are often available in pill form. Targeted
treatments zero in on the cell mechanisms that supply blood
to tumors and promote their growth and division. Rather than
killing both healthy and unhealthy cells, as chemotherapy does,
targeted treatments attack just the cancer cells, sparing healthy
tissues and causing less severe side effects.
For people taking oral cancer treatments at home, sticking
to, or “adhering,” to their treatment plan is a top priority.
(Sometimes this is referred to as “compliance.”)
Generally, oral drugs taken for the long term are used to keep
cancer growth in check or to reduce the chances of tumors
returning. In some cases, people taking these drugs feel
healthy, without any cancer symptoms, which can make it
challenging to stick with the treatment plan.
As with other anti-cancer medications, oral drugs do help
relieve symptoms and ensure the best long-term result. A
tumor can begin growing again if a person with cancer stops
taking his or her medication, say, because cancer symptoms
have gone away. Over the long run, not sticking with your
doctor’s instructions for taking a drug can make treatment
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ADHERENCE
less effective than it would have been if the medication had
been taken as prescribed. That is why it is so important for
doctors and nurses to communicate openly and regularly with
patients and for patients to stay in touch with their health
care team.
Examples of Cancer Drugs
Available in Pill Form
More and more anti-cancer drugs can be taken at home, in pill
form. Some of these pills include:
Hormone treatments:
■ tamoxifen (Nolvadex and others)
■ raloxifene (Evista)
■ letrozole (Femara)
■ anastrozole (Arimidex)
■ exemestane (Aromasin)
■ flutamide (Eulexin and others)
■ bicalutamide (Casodex)
■ nilutamide (Nilandron)
Chemotherapy treatments:
■ capecitabine (Xeloda)
■ cyclophosphamide (Cytoxan
and others)
■ etoposide (Vepesid)
Targeted treatments:
■ imatinib (Gleevec)
■ erlotinib (Tarceva)
■ gefitinib (Iressa)
■ lapatinib (Tykerb)
■ sunitinib (Sutent)
■ sorafenib (Nexavar)
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Challenges With Sticking to a
Treatment Plan
We all know how hard it can be to stick with a new eating or
exercise plan, even when it’s important to our health. But for
many people, it’s also difficult to stay on a daily pill schedule.
In fact, studies have shown that only 40 percent to 50 percent
of people whose doctors prescribe pills for them, to control
high blood pressure or other chronic conditions, for example,
actually take their medicines regularly.
Yet many doctors assume that patients take their medications
as prescribed, partly because the medical system doesn’t have
procedures in place to confirm that
people are in fact taking their pills
at home.
What are some of the reasons
people with cancer might not
take pills as prescribed? Possible
challenges include:
■ Lack of doctor-patient “face
time” When cancer treatments
are designed to be taken at
home instead of at a hospital or
clinic, there are fewer chances for
patients to talk with their doctors
and nurses face to face. There
are also fewer opportunities for
people to get the support and
information they might need to help them continue taking
their pills at home.
■ Burnout It’s one thing to take pil s for a week or so for a short-
term problem like an infection. But it’s quite another to take
pil s every day for five or 10 years or more, especial y when the
person taking the pil s doesn’t feel sick. Some data show that
people get tired of taking pil s day in and day out for years.
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■ Tired of feeling like a “patient” Understandably, after
chemotherapy, radiation, and surgery, many people with
cancer just don’t want to feel like a patient anymore. They
want to start to feel like themselves again and not have to
continue taking medication.
■ Difficulty remembering to take pills It can be easy to
forget to take medicine every day or to get prescriptions
refilled regularly.
■ Rigorous dosing schedule If a drug has to be taken
more than once a day, it can be inconvenient or difficult to
remember to take.
■ Side effects If a medication causes uncomfortable side
effects, such as hot flashes or skin rash, a person may stop
taking it.
■ Cost If insurance doesn’t cover the cost of a drug, a person
may not be able to afford it. Even people who are insured
may have trouble covering the cost of co-payments. And if a
patient’s insurance company changes its rules for what it will
cover, that can create difficulties.
■ Health beliefs Some people don’t believe in taking
medications. Or they may feel that the drugs don’t help or
that they don’t need them.
■ Logistics Someone who doesn’t drive may not be able to
get to a pharmacy to pick up a needed medication.
■ Poor doctor-patient communication If patients don’t
understand their health care provider’s directions for taking
a drug, or if the pros and cons haven’t been discussed
thoroughly, they may not take their medication. Or, for
example, if they haven’t developed a trust in their doctor,
they may not believe that a drug he or she prescribed will
help.
■ Personal factors There are many personal reasons why
some people may not stick to a drug treatment plan. If
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someone has untreated depression, for example, he or she
may not be motivated to take a medication. Or, a person
may find that taking pills serves as a daily reminder that
cancer can return.
Practical Tips for Sticking to a
Drug Treatment Plan
Although taking medication over the long term can be difficult,
there are a number of things you and your doctor can do to
make it easier:
■ Get it in writing When you start a treatment plan, have
your doctor provide written instructions that you can take
home and review. Be sure the instructions explain the size and
appearance of the pill, how often to take it, the dose per pill,
and whether to take it on an empty stomach or with food.
■ Consider the cost Some medications are expensive
and not covered by insurance plans. If that is an issue for
you, tell your doctor. Many drug companies will provide
medications for free or at a lower
cost if your doctor gives them
a referral for you. In addition,
some organizations offer financial
grants to help with drug costs.
■ Get to know your
pharmacist Pharmacists
are excellent resources on all
things related to taking your
medications, from the side effects
you can expect to what to do if
you miss a dose.
■ Understand why you’re
taking the medication As
discussed, some drugs designed to prevent cancer recurrence
must be taken for years to be effective. Be sure your doctor
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explains how the medication wil benefit you.
■ Know what to expect Find out what side effects to
expect so you’re not taken by surprise. For example, about a
third of women who take tamoxifen experience hot flashes,
but usually not until about four to six weeks after taking the
first pill.
■ Incorporate the
drug into your usual
routine For example,
depending on your
doctor’s instructions, you
might choose to take
a daily pill when you
brush your teeth in the
morning or every night
with dinner. If you only take a medication once each week,
choose a day and mark it on your calendar. Use pill-sorting
boxes (available at drug stores) to sort an entire week’s
worth of medications. Some sorters even come with alarms.
■ Know what to do if you miss a dose For instance, if you
forget to take a pill in the morning, ask if you should take it
later in the day or wait until the following day.
■ Plan for travel If you’re leaving town for work or pleasure,
be sure to take along plenty of your medication in its original
container (particularly important for plane travel). Avoid
packing pills in your checked luggage that will be stored
in cargo, in case the luggage is lost. Some patients take an
extra prescription with them when they travel just in case
they lose their bags. You may also want to get a note from
your doctor stating that you have been prescribed the pills.
■ Keep a drug diary Record each dose you take (see pages
8 and 9) and whether you felt that it caused any side effects.
Bring the diary to follow-up visits with your doctor to help
you discuss any difficulties you may be having.
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Creating a Drug Diary
A drug diary is an important tool that can help you stick with
a medication plan by keeping track of the pills you take each
day. It’s also useful to have on hand for doctor visits and in
case of an emergency.
Whenever you see your doctor or nurse, bring the diary with
you. Attach a pen or pencil to the diary with a string or clip
and keep it wherever you store your medications. If you have
difficulty with your vision, be sure to use large print for all
your diary entries.
On the first page of the diary, write down:
■ your name
■ your doctor’s name and contact information
■ your pharmacy’s name and contact information
■ name and contact information of any phone buddies or
caregivers you’ve partnered with to help stick to your pill
schedule
■ name, dose, and purpose of all the prescription medications
you take
■ name, dose, and purpose of all the over-the-counter drugs
you take
■ name, dose, and purpose of all the vitamin/mineral
supplements you take
■ name, dose, and purpose of all the herbal supplements you
take
On the second page, paste a photocopy of the written
instructions you received from your doctor. The instructions
should detail the size and appearance of each prescribed pill,
how often to take it, the dose per pill, whether to take it on
an empty stomach or with food, and how to handle missed
doses.
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