To get the best result from your treatment, it is essential to stay on schedule with your medicine.
Many of today’s cancer treatments are made in pill form. Because they are taken by mouth, they might not seem as important as the injections or infusions given at the doctor’s office. In truth, cancer pills are just as important as other forms of treatment you may be receiving. Because you are responsible for taking these pills, staying on schedule with your treatment is especially important whether you are at work or home, with family and friends, or on vacation. However, this is not always easy to do.
There are many reasons why you may miss a dose during your treatment. In the busy hours of a typical day you may simply forget to take a dose. Or, maybe you decide to skip a dose on purpose because of side effects or the cost of these pills. Another reason might be that over time you may feel better and think you do not need the medicine. However, your treatment is designed to work best when taken as directed by your doctor. This booklet discusses the importance of staying on schedule with your medicine and offers some tips to help you do this.
Taking your pills on schedule is known as adherence. Adherence is key to getting the best result possible from your treatment. Unlike the cancer medicines given at your doctor’s office, cancer pills put you in charge of your treatment. This means you are responsible for remembering to take your medicine as prescribed and on schedule.
How does adherence affect the results of your cancer treatment? Cancer pills release the active ingredient over a set period of time to keep a steady amount of medicine in your body. A steady level of medicine helps the pills work correctly. It may be helpful to think of each dose as “refreshing” the amount of medicine in your body. When you skip a dose, the level of medicine is lowered and this can lower the medicine’s success at treating the cancer. On the other hand, if you take doses too close together you may get too much of the medicine in your body. This extra medicine can lead to more side effects. For this reason, when you forget to take your pills it can be dangerous to take an extra dose.
Each cancer pill has its own unique schedule. Some are taken once a day. Others are taken several times a day or only for a few days during the week. Pills can also be prescribed for a week at a time, followed by a break for a few weeks, or for a longer length of time. That is why it is important for you to have a discussion with your doctor. Have him or her write down when and how to take your cancer pills.
Questions to Ask When Starting a New Cancer Medicine
The relationship you have with your health care team can make a big difference in how well you follow your treatment. Research shows that patients who have good communication with their health care team are more satisfied with their medical care than patients who do not. They are also more likely to take their medicines as directed by their doctor. It always helps to have someone with you, if possible, when you talk with your doctor. They can listen and take notes.When starting a new pill, here are some questions you should ask to help you communicate with your health care team and to receive the best care:
How should I take my pill? Always check if your pills should be taken with food or on an empty stomach. Some pills may need to be taken with a certain amount of liquid, or they may work better if taken at a specific time of day. Asking these questions will help you get the most from your treatment. It can also help open the lines of communication with your health care team.
What are the possible side effects? All medicines can cause side effects. Sometimes, side effects keep people from taking their medicine as directed. Ask your doctor or health care team about what physical or emotional changes may occur during treatment. Asking about side effects before they happen will help you prepare for them. You and your doctor may be able to find ways for you to avoid or reduce any side effects. Also, ask if there are any side effects that you should call your doctor or health care team about.
What should I do if I miss a dose? Many people forget to take a dose of their medicine at some point. Ask your doctor what you should do if you miss a dose. Make a note of what to do in a diary or journal. Try to know ahead of time what to do, rather than trying to reach someone after missing your dose. It is always better to ask your doctor or health care team than to guess at what to do next.
How much will my pills cost? While you are at the doctor’s office, ask about the medicine’s cost. Your health care team may be able to give you more information about your insurance and what medicines it covers. If you cannot afford your medicine, ask about financial help for people with cancer. Many drug companies have programs that provide their medicines for free or at low-cost to patients who qualify. CancerCare and other organizations also offer patient programs to help with co-payment costs of some medicines (see our Resources section).
What if I cannot remember how to take my new pill? Although everything may seem clear in the doctor’s office, you might not remember some of the details later when you start taking your medicine. Ask any questions you have while you are with your doctor. Write down the answers, or ask your doctor or someone else to write them down for you. If you forget to ask a question when meeting with your doctor, you can also ask the other members of your health care team. Your nurse or pharmacist may be able to help.
Do not hesitate to ask any questions while you are still at the doctor’s office. This will give you some peace of mind and help ensure that you benefit from your treatment plan. Other questions to ask may include:
- How does this pill work?
- What time of the day should I take this pill?
- Should I take it with or without food?
- How much water should I drink when I take this pill?
- What side effects require my calling the doctor?
- Is this pill available at my local pharmacy?
- What type of co-payment assistance is available?
- Are patient-assistance programs available?
- Who should I call if I have questions?
Tips to Help You Take Your Pills on Schedule
Many things can affect your ability to stay on schedule with your treatment. Simply forgetting to take a dose of medicine is the most common reason that doses are skipped. Thankfully, there are many simple and helpful ways to remember to take your pills. This section lists some practical tips to help you stay on schedule with your medicine.
So You Don’t Forget to Take Your Pills…
Get organized. Pillboxes are useful for keeping your pills in order. They are easy to find at your local pharmacy and are inexpensive. Pillboxes come in many sizes to hold several medicines. Some pillboxes can keep up to a month’s supply of pills. As your supply runs low, this type of pillbox makes it easy to remember to get a refill. When using a pillbox, always keep the original pill bottle until you have taken the last pill. If you are part of a clinical trial, remember to return the bottle after you have taken the last dose of the medicine.
Use alarms or reminder calls. Set up an alarm on your watch, phone, or computer to remind you when it’s time to take your pills. Or, ask a friend or family member to remind you by phone or email to take your medicine. That person can also help you remember to pick up your refill at the pharmacy. Also, many pharmacies now have patient reminder systems that will call you when it’s time to order your refill and when your refill is ready. Check with your local pharmacy to see if they offer these services.
Add your pills to your routine. You may forget or skip doses because taking your pills is not part of your normal routine. To help you remember, try pairing your pill with an activity you do regularly or at a certain time of day. Keep your pills with you at all times. Use pillboxes and keep the original prescription bottle at home, except when you travel. You might also keep a daily diary or journal in which you write down your medicines and their schedules. Make a chart in the diary and check off each medicine after you take it. Leave room to jot down notes about how you feel while on the medicine, such as any side effects you experience.
Use at-home health services. A good example of a service that can provide help at home is the Visiting Nurse Service. Visiting nurses provide a wide range of services and can help you find practical ways to remember to take your pills. Find a visiting nurse in your community at www.vnaa.org or call 202-384-1420.
Try your pharmacy’s or insurance company’s mail-order service. This is a service that delivers your pills to your home. In many cases, the co-payment for the medicine may even be lower than if you pick up your refill in person at your pharmacy. This is a good option if long waits at the pharmacy keep you from refilling or picking up your pills or if your local pharmacy does not carry your pills.
Be creative. Create your own chart or schedule using your computer or other tools. This schedule can be made based on what works best for you. Use color coding or pictures as reminders for days you should take your pills.
So You Don’t Forget to Refill Your Pills…
Plan ahead. Check the pill bottle for the number of refills that are left when you get your new prescription. As soon as the label shows zero refills, call your doctor for a new prescription to take to the pharmacy. That way, you will have the new prescription ready when you need it. Ask your pharmacy if they can email or call you before your refill is due. Some pharmacies let you refill your pills over the phone with simple push-button commands. So you don’t have to get refills as often, ask your doctor to prescribe a 60- or 90-day supply of pills instead of a 30-day supply.
For travel, make sure you have more than enough medicine to last while you are away. Picking up a last-minute refill or filling a prescription if you are away from home can be hard. You may have to contact your doctor for a refill prescription. You may also have to pay more for your pills, especially if you are overseas. Planning ahead can help you avoid stress and extra cost. When traveling, keep your pills in the original bottles to avoid delays at airports. Pack the pills in your carry-on bag in case of delays, travel-plan changes, or lost luggage. It is also helpful to have the prescription for your medicine and/or a letter from your doctor with a list of the pills you are taking with you.
If It Is Hard to See or Read Your Pill Bottles…
Many people take several kinds of pills, but pharmacies usually use one type of bottle for all medicines. This can make it hard to tell different medicines apart. One thing you can do is customize your pillbox with your own larger labels. Use large letters to rewrite the name of the pill and/or the instructions on how to take the medicine. Attach the new labels to the pillbox covers. You can also purchase pillboxes with large letters.
If English is not your first language, write your instructions in your native language to make them easier to follow. Getting different-colored pill bottles from your pharmacy is another option. Ask your pharmacy if they provide this service. If you have poor vision, Braille-labeled pillboxes are available.
Frequently Asked Questions
Q. How should my pills be taken if I am traveling through different time zones?
A. When you plan to travel to a different time zone, always check with your doctor about how to take your pills on schedule. For short trips, it is often recommended that you continue to take your pills based on your home time zone. This way, there is no need to readjust when you return home. However, this will depend on the pill that you are taking. Talk to your doctor or health care team when you have travel planned, take long trips away from home, or if travel is a regular part of your life.
Q. How can I better organize the pills that I have to take on schedule?
A. Many patients use charts or notebooks to keep track of their medicine schedules. Charts can be kept with you at all times, and can be very helpful if you take several pills on a daily basis. Place a chart in your purse, bag, wallet, backpack, briefcase, on your refrigerator, or on your bedside table. Keep it wherever it will be most handy to remind you when it is time to take your pills.
Pillboxes are another good idea. These are available in many sizes and can hold one or more week’s worth of your pills. You can sit down once a week or once a month to fill the pillbox. If you need help setting up the pillbox, ask a friend, family member, or a member of your health care team. Pillboxes are especially helpful if you have directions that are hard to follow. They also help remind you that you have taken your pills.
If the labels are hard to read, make your own labels so they are easier to understand. If English is your second language, write this information in your native language. If you have poor vision, create your own label by writing the medicine’s name and instructions in a larger text. Braille labels are also available from most pharmacies.
Q. What are my options if I cannot afford my cancer medication?
A. Financial help is available for people with cancer who cannot afford their medicines. The websites of the Cancer Financial Assistance Coalition, the Partnership for Prescription Assistance, and Needy Meds are excellent resources for patients who have difficulty paying for their treatment. You can also contact CancerCare to learn about our financial assistance programs and for a referral to other organizations that may be able to help.
Q. Can I still get vaccines for the flu, pneumonia, or other infectious diseases if I am taking oral cancer medicines?
A. Always remember to talk with your health care team before receiving vaccines. Flu and other vaccines are important to your overall health. Most people taking oral cancer pills should receive these vaccinations.
CancerCare would like to thank the following individuals for reviewing this booklet to ensure medical accuracy:
Kathryn J. Ruddy, MD, MPH
Medical Oncologist, Dana-Farber Cancer Institute
Instructor in Medicine, Harvard Medical School
Heather Wakelee, MD
Assistant Professor, Department of Medicine
Division of Oncology, Stanford University
Stanford Cancer Institute