People living with leukemia have more options than ever when it comes to managing their health, and your doctor will recommend the best treatment plan for you. But then you have to play your part. It is critical that people with leukemia adhere to the schedule, frequency, and dosages of their treatment plans to maximize effectiveness.

Side effects and the interruptions of modern life can make it a challenge to stay on track with leukemia therapy, but it is critical for effective cancer treatment outcomes. Treatment adherence is a key contributor to survival in people with leukemia.

To learn more about why consistency is so important in the treatment of leukemia and other blood cancers, MyLeukemiaTeam spoke with Dr. Matt Kalaycio, a board-certified physician who specializes in hematology, and a professor at the Cleveland Clinic Lerner College of Medicine at Case Western Reserve University.

Why Treatment Adherence Is Important

The treatment of cancer in general, and blood cancers in particular, is complex, Dr. Kalaycio explained. Some treatments and protocols must be given on a specific day during the cycle of treatment, which typically lasts a month. Strict protocols for medication timelines, along with high adherence rates, offer the best chance for the treatment to be fully effective.

Within that month, some steps of treatment need to be administered on day one, on day seven, on day 15, or on day 22. Some treatment regimens are also intermittent. “There are pharmacokinetic reasons for why we give things on the day that they are given,” Dr. Kalaycio said. “That is true for pills too. There is a reason why they are given twice a day as opposed to once a day. Sticking with the prescription, the plan, and the protocol are all very important to maximize the chances of success. Even missing the timing of a pill at home, which might not seem like a big deal, can disrupt the entire treatment cycle.”

Medication adherence at home is critical. Your leukemia medications are prescribed to help your body make the most of them and absorb them to their greatest efficacy. Skipping a pill, taking two every 24 hours instead of one every 12 hours, missing doses regularly, or discontinuing them can render the best treatment plan less effective. It can also reduce the likelihood of survival, and can even cause safety issues for the person being treated.

Barriers To Treatment Adherence

Challenges abound for people who are living with leukemia, in terms of treatment plans and medication schedules. There are several common issues that affect adherence.

Scheduling and Remembering

Problem: Work, school, and life in general can cause people to lose track of time. Some MyLeukemiaTeam members report brain fog, which understandably affects memory and focus. This can make remembering doctors’ appointments and medication schedules more difficult.

Solution: Alarms, pill packs, calendars, and other simple tools can remind people to take their medications at specific times. Smartphone apps and smart pill packs or dispensers can be useful as well.

Confusion About Treatments

Problem: Making major health decisions is stressful, and that includes treatment plans. People under stress may agree to things they do not fully understand, making it harder for them to comply later.

Solution: Have your questions prepared before you meet with your doctor about your treatment plan. Ask about side effects, including what to expect, how severe they will be, how long they will last, and tips to alleviate them. Make sure you understand any new medications, including the prescribed dosages, when and how often to take them, and the risks of nonadherence. Consider having a friend or caregiver go with you to take notes to review later, or record the session on your smartphone.

Cost

Problem: Even the best health insurance policy may have gaps in it, and those gaps can be challenging to close.

Solution: Nonprofit organizations such as the American Cancer Society and the Leukemia & Lymphoma Society have resources that can help with health care costs and prescription copays so treatments do not need to be delayed or interrupted. Some pharmaceutical companies have subsidy programs to help those with coverage issues as well.

Side Effects

Problem: Side effects from medications can be difficult to manage and can be an obstacle to medication adherence. MyLeukemiaTeam members have reported bone pain, nausea, heartburn, severe fatigue, fluid retention, and more.

Solution: Talk to your doctor to find solutions. One MyLeukemiaTeam member reported experiencing severe bone pain due to a medication. She was able to work with her oncologist to adjust her dosage until they achieved the right balance of effective treatment and reduced side effect burden. Other members reported that their doctors were able to prescribe alternative treatments, including both prescription and holistic approaches, that helped reduce the impact of some common side effects, including nausea and fatigue. These can be critical factors in improving quality of life.

Dr. Kalaycio has treated many people who feel they should not bother their doctors. “They act like they are infringing on our time or that their questions are not important enough to bother with, but that is why we are here,” he said. “Ask the question. Let us tell you if it is important enough to go to the emergency room or can wait until Monday. We cannot help you with side effects if you do not report all of them.” He maintained that open communication with your treatment team is the single most effective way to manage the impact of treatment.

He also cautioned that it is usually worth it to work through the full treatment cycle rather than stopping it because of side effects — real or perceived. “I see people who have a side effect — let's say they are getting a headache. And they blame it on whatever treatment we are giving, whether it really is the cause or not, and they will stop the drug because of that side effect, but not tell anyone on the treatment team until we see them again a month later,” he said. “That situation does not help anyone. Communication with your treatment team is exceedingly important. We will know if that headache is a side effect or something else, maybe unrelated.”

Are There Times When Treatment Should Be Skipped?

Every rule has its exceptions. There are times when skipping treatment is a medical necessity, Dr. Kalaycio said. “Sometimes people have bad reactions,” he noted. “They may be vomiting or have a fever. In those situations, we understand that treatment needs to be delayed. But we know exactly how to manage that situation when it arises. The patient at home does not have the knowledge or experience to adjust when needed.”

The bottom line, according to Dr. Kalaycio, is simple: “Once the treatment plan is agreed upon by both parties, everyone should be on the same page about what we are going to do. But once that plan is in place, it is incumbent upon the person in treatment to make sure that they do their part, just as it is incumbent on the physician to do the same. One without the other does not a team make, and outcomes are improved when both are doing their parts. Open communication and commitment on both sides will make any treatment plan more effective over time.”

Talk With Others Who Understand

MyLeukemiaTeam is the social network for people living with leukemia and their loved ones. On MyLeukemiaTeam, more than 7,000 members come together to ask questions, give advice, and share their stories with others who understand life with leukemia.

How does your leukemia treatment affect your life? Have you found ways to stay on the plan your doctor prescribed? Share your experiences in a comment below, or start a conversation by posting on your MyLeukemiaTeam Activities page.