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Staying on Track with Oral Cancer Medications

November 2019 Volume 6 – Lung Cancer

In the past, treating blood cancer almost always involved chemotherapy, which was delivered through an IV at a doctor’s office or hospital.1 However, in recent years, researchers and scientists have developed cancer medications in pill form, which means that many patients with diseases such as lymphoma and leukemia are now treated with oral medications—tablets and capsules—that they take at home.

Many patients prefer oral treatment, because it saves them trips to the hospital and waiting for their medications to be given.2Plus, the newer medications tend to be more effective.3

So, what’s not to like?

Unfortunately, taking oral medications at home can be challenging. One of the biggest challenges is “adherence,” which refers to the extent to which patients take the medication as prescribed by their doctors.4 Studies have shown that patients with blood cancer who take oral medications at home are less adherent than those who have their medications given at the hospital, where doctors and nurses make sure that patients get the right medications, in the right amounts, and at the right times.5 At home, where doctors and nurses aren’t around to help, patients and their families are left to follow medication instructions as well as they can. These instructions may be complicated and challenging to understand.

But issues with adherence do not just happen because instructions are hard to follow. There are a lot of reasons why patients with blood cancer are not taking their medications as prescribed.

As a patient, it can be helpful to understand these reasons, and, just as importantly, to know what to do if you find yourself in a similar situation. Read on to learn more about how you can stay on track with your oral cancer medications.

If You Aren’t Staying on Track, You Aren’t Alone

First of all, if you are having trouble staying on track with oral medication, then it may help to know that you aren’t alone. One study found that only half of patients with blood cancer were taking their oral medications as prescribed all the time.6

It’s also worth noting that most obstacles to staying on track have nothing to do with a patient’s effort or willingness to take medical advice. There are many other reasons why medication adherence can be challenging for patients. However, if you recognize the issues that are keeping you from adhering to treatment as prescribed, you are in a better position to do something about it.

Negative Impacts of Nonadherence

There is no reason to minimize the importance of this issue—medication nonadherence can have serious consequences.

A serious negative impact of not taking your medications as prescribed is that they become less effective. To put this in perspective, one leukemia study found that patients who took their medications as prescribed had a 90% chance of remission.6 In contrast, nonadherent patients had a 15% chance of remission. That can be a huge, life-altering difference, because people who enter remission usually live longer.

In addition to worse outcomes, patients who don’t take their medications as prescribed may have to put up with a lot more hospital time than those who do. On average, nonadherent patients have to take more trips to the doctor. They also have to stay in the hospital more frequently, and for longer periods, than patients who take their medications as prescribed.7

Those extra trips to the hospital may also become more stressful than they need to be. If your doctors don’t know that you are missing doses of your medication, then they might think that your current therapy isn’t working.7 In response, they may perform extra tests, like blood work or bone marrow collection. In addition, they might change your treatment, add another drug, or even increase the dose of the drug you are on. As if these reasons aren’t enough, the added costs are also worth considering, as you might be responsible for extra copayments.

What About Taking More Than Prescribed?

If taking some medication is good, then taking more is better, right?

With any medication, the answer is a strong “no,” unless directed by your healthcare provider. Remember, adherence means taking the medication as prescribed by your doctor. Healthcare providers have had specific medical training to treat cancer, making them the most qualified to determine the right dose of each medication for each individual patient. Doses are determined based on many factors, including age, other health conditions and medications, and more.

Although it may be tempting to take your medications more frequently or in larger doses than prescribed, hoping for more benefit, this can do more harm than good. Remember, cancer medications are much stronger than other common medications, such as aspirin, so taking too much can cause very serious, potentially life- threatening health problems like kidney failure.7,8

How People Get Off Track

Now that you have a clear sense of what adherence problems are, how often they occur, and what their consequences can be, it may be useful to understand why they happen.

As a patient, it can help to know the factors contributing to nonadherence, so that you can recognize them if they happen to you during your treatment journey. For some patients, multiple factors might be present at the same time. They can be divided into 3 general categories2:

  • Personal factors
  • Medication factors
  • Healthcare system factors

We will go over examples of each of these factors, followed by ways to overcome the challenges that they may present.

Personal Factors

Living with cancer can be very stressful for everyone involved, including patients, their caregivers, and their loved ones. In some cases, this stress can contribute to issues like depression and anxiety.9,10 Meanwhile, patients make every effort to go on with their usual lives and responsibilities. Considering these challenges, it’s easy to understand how a dose of oral medication can be missed.

Depression is especially common and underrecognized among the elderly, who may also be facing declining mental function as they age. If depression and mental decline are occurring together, the chances of staying on top of oral medications may become even more challenging.

Even if patients are coping well with stress, they may still have certain opinions about themselves and their condition that impact how well they take their medications.2 For example, patients who consider themselves capable and in control are more likely to take medications as prescribed, compared with patients who feel overwhelmed or unable to help themselves. As another example, patients who don’t expect their medications to work will be less likely to take them, compared with patients who believe that their medications will help them get better.

On a similar note, the more aware patients are of the health benefits provided by their oral medications, the more likely they are to take them.2 Remember, taking your medications as prescribed is strongly linked with longer survival and a better quality of life.

Patients with cancer who have more social support tend

to be better about taking their medications than patients without people supporting them.11 Social support can involve a variety of different people, from friends and family, to other patients, and from individual to group therapy. Sharing your experience with others, and having help along the way, can make a big difference in how you feel and your overall quality of life, both of which can impact how well you take your medications.2

Finally, the cost of oral medications can vary depending on the medication type and insurance provider.4 In some cases, patients may face challenges paying for their medications, which can affect adherence to treatment.

Medication Factors

Patients who believe that their particular diagnosis is very serious and life-threatening are more likely to take their medications regularly than those who have conditions considered less severe.1 Although all cancers should be taken seriously, patients with less immediately life-threatening types of cancer have been shown to have worse adherence than patients with more immediately life- threatening forms.4

Some of the newest cancer medications are designed to target cancer cells and not healthy tissue, but sometimes, cancer cells are mixed with healthy cells, which can lead to “off-target” effects, which patients feel as side effects.

Considering possible side effects, such as upset stomach and feeling tired, it’s easy to see why patients might not want to take their cancer medications.2 In response, they may take them less frequently or reduce doses to try to limit side effects. Instead, it is much better to tell your healthcare team about any side effects you may be having, as they will do their best to minimize these during treatment.

Timing is important too. Cancer medications may need to be taken on some days and not others, which can make it hard to remember when to take them.4 Also, many people are required to take more than 1 cancer medication. In addition, some patients are being treated for other health conditions (in addition to cancer), and they should take those medications as prescribed too. Drug schedules aren’t always regular, either. Sometimes, they change from week to week. Without paying very close attention, it may be easy to lose track, making it more likely that you take too little or too much medication.

Some oral medications may be harder to take than others.4 For example, some drugs need to be taken with food, while others need to be taken on an empty stomach. In other cases, you might not be able to take a drug with a certain food, like grapefruit, which could impact your usual food choices. These sorts of things can be especially hard to remember if you are taking multiple drugs.

Don’t stop taking your medications even if you don’t think they are working. If you take medicine for a headache, and your headache goes away within the hour, then you would probably think that the medicine helped and be more likely to take the same medicine the next time you have a headache. With cancer, medications don’t work this fast. Instead, they require regular and sometimes long-term use to be effective. This can create problems with adherence, because patients might not feel like their medications are working, and because of this, stop taking them.12

It’s extremely important to remember that how you feel (better or worse) is a poor way to tell if a medication is working. The anticancer effects of some drugs can be delayed, so it can take time to feel better; in some cases, you might actually feel worse before you feel better. Never stop taking your cancer medications without talking to your doctor first.

Healthcare System Factors

Health insurance coverage can have a big impact on medication cost, which may prevent patients from being able to afford certain oral medications.

Beyond cost issues, insurance companies sometimes need to approve drugs before they are prescribed, in a process called “prior authorization.”13 Even in the best scenario, prior authorization can be time-consuming, sometimes needing more than 1 phone call with an insurance company. At a busy doctor’s office, prior authorization can delay drugs, or even cause hang-ups that stop them from ever reaching patients.

The personal relationships that patients have with their healthcare providers, including doctors, nurses, and pharmacists, can impact medication adherence.7 Factors such as seeing the same doctor every time you visit the hospital, and having a positive experience when you do, can improve the odds of taking your medications. Other nonpersonal factors include travel distance to hospitals and pharmacies, hours of operation, wait times, and availability of appointments.

Conquering the Medication Challenge Get Educated

With all of these possible barriers to taking oral medications, you may be wondering how anyone can stay on track. The good news is, by reading this article, you are already on the right track to better medication adherence. Simply knowing that adherence can be a problem, and why, is already improving your chances of keeping up with your medications.4 To improve your odds even more, here are some tips for staying on track with your medications.

Communicate

Remember, estimates suggest that around one-half of patients with blood cancer may not be taking their oral medications as prescribed by their doctor. This isn’t an excuse to do the same, but just so you know that if you aren’t taking your medications as you should be, you aren’t alone, and you probably won’t be the first patient to express issues to your healthcare team. If you do, remember to be honest and forthcoming. Your healthcare team will be most able to help you if they fully understand your situation.

If you let your doctor know about the challenges that you are facing, then he or she can suggest or recommend possible solutions. For example, if you think you are having side effects, then a different dose or medication choice may be needed. If you are having trouble with remembering when to take your medications, then a nurse or physician’s assistant may be able to help you organize your routine. And if you think you might be suffering from depression, then let your doctor know. This is a treatable condition that could be stopping you from taking control of your therapy.

Enlist Help

In addition to telling your healthcare team about all the challenges that you are facing, it can be helpful to tell others. For example, friends and family may be able to help you get to the doctor’s office on time, organize your medication schedule, call the insurance company, or communicate with your doctor if you don’t feel up to it.

You can also turn to patient advocacy organizations that specialize in blood cancers for help, such as the Lymphoma Research Foundation, the Leukemia and Lymphoma Society, or the Multiple Myeloma Research Foundation, depending on what kind of condition you have. These organizations can help put you in touch with cancer support groups in your area. Some of these organizations provide grants to help patients in need to cover costs of medical care. Similarly, drug companies may be able to help cover copays for patients in need of assistance.

Use Tools to Succeed

Keeping track of medications can be tricky, especially for patients with more than 1 health problem. Fortunately, there are several ways to help with this, some simple, and some more complex.

One of the simplest options for improving adherence is a pill organizer, which divides pills up into days of the week. This means fewer decisions on a daily basis. Some organizers have compartments for up to a month of medication, making long-term planning easier.

Patients taking oral anticancer medications should also consider keeping a calendar, either on paper or on a computer, to stay on top of what drugs should be taken, and on what day.

If you need to take medications 2 or 3 times a day, then it may be helpful to set regular alarms, either on a watch, your smartphone, or an alarm clock. This will help you stay on top of doses, even if you lose track of time.

Higher-Tech Solutions

The above options are easy and affordable for most people. However, there are some newer, more advanced options for keeping track of medications.

For example, a number of smartphone apps are available for reminding you to take your medications, such as Medisafe and Care4Today.

Another high-tech solution is the Hero in-home medication manager, which can automatically dispense up to 90 days of medication. The system works with a mobile app, which allows for customization and sharing of adherence with other people.

Summary

Issues with oral medication adherence are common among patients with blood cancers such as lymphoma and leukemia. Considering the stresses involved in living with cancer, which occur in addition to the usual demands of daily living, it’s easy to understand how doses can be missed now and again. A number of additional factors may stand between patients and proper adherence, such as complicated dosing instructions, side effects, and financial constraints, any of which may occur alone or in combination with one another.

To overcome such challenges, it is very important to honestly and completely report issues to your healthcare team. For certain challenges, you may be able to enlist the help of friends, family, a patient advocacy group, or even the drug company that makes your medication. In other instances, you may be able to use tools to your advantage, such as a calendar and pill organizer, or higher-tech devices and smartphone apps.

Remember, patients who take their medications have better success with their cancer treatment. The good news is, if you are having issues with medication adherence, then you aren’t alone, and it’s not too late to get back on track.


References

  1. Hall AE, Paul C, Bryant J, et al. To adhere or not to adhere: rates and reasons of medication adherence in hematological cancer patients. Crit Rev Oncol Hematol. 2016;97:247-262.
  2. Ruddy K, Mayer E, Partridge A. Patient adherence and persistence with oral anticancer treatment. CA Cancer J Clin. 2009;59:56-66.
  3. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines). Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma. Version 1.2020. www.nccn.org/professionals/physician_gls/pdf/cll.pdf. Published August 23,2019. Accessed August 27,2019.
  4. Lymphoma Research Foundation. Adherence and oral therapies in lymphoma and CLL: a Lymphoma Research Foundation white paper. https://www.lymphoma.org/wp-content/uploads/2018/03/6609-LRF-Oral-Therapies-White-Paper-Final2-Web-03_14.pdf. Published February 1, 2018. Accessed August 27, 2019.
  5. Wimbiscus B. Patient adherence, a challenge of oral chemotherapy. Targeted Oncology. www.targetedonc.com/news/patient-adherence-a-challenge-of-oral-chemotherapy. Published January 21, 2019. Accessed August 27, 2019.
  6. Tsang J, Rudychev I, Pescatore SL. Prescription compliance and persistency in chronic myelogenous leukemia (CML) and gastrointestinal stromal tumor (GIST) patients (pts) on imatinib (IM). J Clin Oncol. 2006;24(18 suppl). Abstract 6119.
  7. Partridge AH. Adherence to therapy with oral antineoplastic agents. J Natl Cancer Inst. 2002;94:652-661.
  8. Venclexta [package insert]. North Chicago, IL: AbbVie Inc. 2016.
  9. Massie MJ. Prevalence of depression in patients with cancer. J Natl Cancer Inst Monogr. 2004:57-71.
  10. Dos Santos M, Lange M, Gervais R, et al. Impact of anxio-depressive symptoms and cognitive function on oral anticancer therapies adherence. Support Care Cancer. 2019;27:3573-3581.
  11. Applebaum AJ, Stein EM, Lord-Bessen J, et al. Optimism, social support, and mental health outcomes in patients with advanced cancer. Psychooncology. 2014;23:299-306.
  12. Hui RL, Lide W, Chan J, et al. Association between exposure to topical tacrolimus or pimecrolimus and cancers. Ann Pharmacother. 2009;43:1956-1963.
  13. The Doctor-Patient Rights Project. Not what the doctor ordered: barriers to healthcare access. https://doctorpatientrightsproject.org/dprpreports/not-what-the-doctor-ordered/

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