Chronic Lymphocytic Leukemia

Medication Adherence

Treating chronic lymphocytic leukemia (CLL) has become more convenient for patients through the use of oral medications. Oral therapy is just as potent as intravenous (IV) therapy, and to be fully effective, every dose must be taken with accuracy, precise timing and safety precautions. Taking the right drug in the right dose at the right time – every time – for as long as prescribed is referred to as medication adherence (or treatment adherence).
Most cancer therapies are designed to maintain a specific level of drugs in your system for a certain time based on your cancer type and stage, your overall health, previous therapies and other factors. If your medications are not taken exactly as prescribed, or if you miss appointments for IV infusions or injections, the consequences can be serious.

If you are taking an oral medication, keep in mind the benefits and challenges that accompany this treatment option.

Benefits: Pills are a less invasive treatment option, requiring fewer medical appointments. Being responsible for taking them may also help patients feel more in control at a time that may feel out of control.

Challenges: Getting off schedule, missing doses, taking an incorrect dose or not following the treatment instructions can lead to increased side effects, treatment delays or hospitalization. The most serious consequence is a poor outcome, including cancer progression or recurrence.

Set yourself up to succeed with these suggestions:

  • Make sure you fully understand instructions for how and when to take your medications.
  • Talk with your pharmacist about how to take and store the medications properly.
  • Keep a list of your medications with the names and contact information of the doctors who prescribed them. You can use a special form such as “My CLL Medication Journal” to keep the information in one place.
  • Track each dose, including missed doses.
  • Detail any side effects.
  • Use medication reminders and organizers. Set an alarm on your clock and phone, wear a vibrating wristwatch or download a smartphone app.
Do not hesitate to contact your doctor if you miss a dose, if side effects interfere with your daily life or if you are having trouble paying for the medication. It is important that you do not skip doses or stop taking your medication without talking with your doctor. Communicating with your health care team is extremely important, and they will rely on you to be open and honest so they can find options that work for you.

To help you keep the importance of medication adherence top of mind, remember: You’re not merely taking a pill, you’re taking control of a key part of your cancer treatment.

What is Unintentional Noncompliance?

Unintentional noncompliance or poor adherence is the missing, skipping or stopping of your medications without understanding the harmful effects of those choices. Even with the best of intentions, it is easy to forget how important it is to stay on the proper medication schedule. Sometimes life gets in the way, or you may simply not understand the effects of missing a dose.
The following possible scenarios show how easy it is to get off track with your medications and why it is so important to talk with your doctor about any concerns.

Sally is a fictional patient who has been taking medications to treat her CLL for many years, but she is considering stopping. Here are some examples of imaginary discussions that Sally may have with fictional Dr. Brown, her oncologist.*

Scenario 1
Sally: “I haven’t felt symptoms for six months. Can I stop taking my medications now?”
Dr. Brown: “Your medication prevents your CLL from worsening or recurring. Not having any symptoms is one way to see that the therapy is continuing to do its job.”

Scenario 2
Sally: “My treatment side effects are worse than my symptoms of CLL. I think it would be better if I stopped the medications so I don’t have to muscle through the side effects.”
Dr. Brown: “I’m glad you told me about the difficulties you’re experiencing. Fortunately, advances in CLL have led to many other treatment options that may not have as many side effects. Let’s try a different drug that may not affect you in the same way.”

Scenario 3
Sally: “My oral medication helps me feel great, but it is expensive. Because cancer medications are so powerful, I thought it would be okay to cut my dose in half so I can get its benefits and save money, too.”
Dr. Brown: “I understand, but that is not how cancer medication works. You must take it as prescribed for it to be most effective. There are many financial and advocacy resources available that may help with the cost of your cancer medication. A member of our health care team can connect you with the resources.”
*Sally and Dr. Brown are fictional.