For some people, part of their cancer treatment plan may include taking medications for several months, years, or even the rest of their life. Sometimes, managing the practicalities that can come with taking these long-term medications can be difficult to navigate.

Remembering to take a long-term medication, for example, can be a daily challenge for many people. The cost of medications, in addition to the logistics of filling and receiving prescriptions on time, can be another challenge. Finally, the drug’s side effects can be a major barrier to taking long-term medication, as someone may stop taking their medications for several days or longer if they are experiencing difficult symptoms. However, it is important to keep in mind that skipping doses of your medication can be dangerous. Always talk with your health care team, including your pharmacist, if the side effects you are experiencing are interfering with your daily life or if you are having trouble affording or receiving your medications. They can discuss what strategies may be available to help.

Here, learn more about why long-term medication might be prescribed and find tips for managing the challenges that can come with it.

Why might someone with cancer be prescribed long-term medication?

The reasons for being prescribed a long-term medication can vary based on the type of cancer a person has, the treatments available, the person’s individual goals, and how their cancer behaves over time. Some people may also be prescribed long-term medication to prevent their cancer from coming back or to delay the growth of advanced disease after the cancer responded to the initial treatment. When medication is given for these purposes, it is called maintenance therapy. Or, medication may be needed to manage the side effects that arise during or right after treatment or many years later, called long-term or late effects.

Some common types of long-term medication usage in cancer care include:

  • Tyrosine kinase inhibitors (TKIs) for chronic myeloid leukemia (CML) and other types of cancer. Long-term treatment for CML can include TKIs, which are a type of targeted therapy. TKIs work by targeting a unique protein called the BCR-ABL tyrosine kinase enzyme. The first TKI to treat CML received approval from the U.S. Food and Drug Administration in 2001. Today, there are many different types of TKIs available to treat not only CML, but also other types of leukemia and cancers of the lung, breast, kidney, and more. TKIs can be taken over long periods of time. These daily pills can prevent the cancer from coming back or keep it from growing. For instance, many people with CML may take TKIs over the course of their lifetime.

  • Hormonal therapy for breast cancer. Among the 3 main subtypes of breast cancer, hormone receptor-positive breast cancer relies on the hormones estrogen and/or progesterone to grow. Treatments called hormonal therapy can be taken to block these hormones and prevent the breast cancer from coming back. Tamoxifen is an example of a hormonal therapy that is taken every day for 5 to 10 years to help prevent a breast cancer recurrence.

  • Thyroid supplements for thyroid cancer. The main treatment for most thyroid cancers is the surgical removal of the thyroid gland, which is part of the endocrine system. After the thyroid is removed, your body no longer produces critical hormones. To address this, a type of hormone treatment called levothyroxine (multiple brand names), which is a thyroid hormone replacement medication, is often taken as a daily, lifetime pill.

Practical tips for taking long-term medication

Managing a long-term medication can be challenging, but there are ways to make the task more intuitive. These methods include:

1: Finding an organization system that’s right for you.

A pill box may be a good first step to help you remember to take the medications you need on a long-term, and often daily, basis.

Pill boxes are widely available to purchase in pharmacies and many stores. They come in different colors and sizes, including larger sizes and/or with push button openings if you have arthritis or weakness in your fingers. Different styles are available, such as for 1 medication a day or separate containers for medication at different times of the day.

However, always read the drug’s label and written information about how to safely store and handle your specific medication before proceeding. Some medications need to be refrigerated. Some need to be kept separate from other medications. Sometimes, you may need to wear gloves when handling a medication. These are important factors in deciding which organizational system is best to help you keep track of your medication.

You should also be aware of the name of the drug you have been prescribed, what it is for, and the prescribed dose. Sometimes, when the dose of a medication gets changed, you may still have the prior dose on hand. This can cause confusion and may lead to you accidentally taking the wrong dose. To avoid this, keep track of any changes to your medications and have a storage plan in place for drugs you are no longer taking. Learn more about what you should do with unused medications.

2: Making the medication part of your daily routine.

Setting alarms on your phone can serve as good reminders for taking your medication. Using an app on your phone, such as the Cancer.Net Mobile app, to set reminder notifications and log when you take your medication may also be helpful. Or, you may prefer a simple paper calendar or a consistent notepad be used to mark off when you’ve taken your medication each day. It can help to incorporate taking your medication into another daily activity, like brushing your teeth in the morning or getting off work in the evening. Make sure the daily activity is something that happens on a consistent basis in your life. It can also help to have a support person to help remind you to take your medication. And, check with your health care team on guidance around when and how you should take your medication, such as early in the morning, with a full glass of water, or after a meal.

3: Having open communication with your cancer care team, including your pharmacist.

Regular and open communication with your cancer care team is very important when taking long-term medications. Be sure to ask questions about what to expect, how to manage any side effects, how the drug works, and what to do if you miss a dose.

Some of the other questions you may want to ask your cancer care team if you are prescribed a long-term medication include:

  • How long can I expect to take this medication?

  • What kind of support can you offer to help me adapt to taking my medication and manage its side effects?

  • Are there resources available to help me pay for my medication?

  • Who can I contact if I have questions or concerns regarding my medication?

  • Can you provide me with a written handout that will help me remember how to take my medication and learn about side effects?

While taking a medication every day can be challenging, it is important to remember why you are taking the medication, whether that is to slow cancer growth or prevent a cancer recurrence.

“Starting and sticking to a daily medication can be challenging. But you don’t have to do it alone. Be sure to have a support system around you which includes your health care team. Your pharmacist, for example, can help you answer questions about your medicines, including how to best get organized, how to keep track of your medications, and how to recognize and address side effects.” – Benyam Muluneh, PharmD, an assistant professor at the University of North Carolina at Chapel Hill Eshelman School of Pharmacy and a spokesperson for the Hematology/Oncology Pharmacy Association 

4: Reporting new or worsened side effects right away.

Always tell your cancer care team or pharmacist about any new or worsening symptoms you are experiencing. You should also talk with your cancer care team about strategies to prevent common side effects. For example, anti-nausea medications may help manage nausea and vomiting caused by certain cancer medications.

5: Setting realistic expectations for the first 3 to 6 months of taking the medication.

It takes time to adjust to taking long-term medication. After all, these medications, though they generally have less side effects than older treatments, can impact your energy, mood, sleep, and ability to go about your daily life. Remember to be kind and patient with yourself as you manage the transition to taking a long-term medication.

6: Communicating any changes in your health insurance immediately.

Loss of employment or other changes in your health insurance can affect your ability to get your medications, so it is important to tell your cancer care team and pharmacist right away if you are experiencing a change in coverage. Your pharmacist can help you find alternative payment plans if you lose insurance, while your cancer care team may be able to recommend alternative medications. This includes your general pharmacy as well as any specialty pharmacy you may use.

Additionally, mail-order is often used to fill prescriptions for long-term medications, so be sure to keep your insurance information, as well as your address and other important details, up to date with them.

7: Preparing to travel with medications.

When you travel away from home, be sure to bring more than enough medication for the length of the trip, and if you can, keep the medications in their original containers. Pack your medication in a separate, waterproof bag and put it in your carry-on bag, so they are with you at all times. Learn more about the steps to take when packing and how to prepare for travel during cancer.