Balancing the benefits and side effects of your chronic myeloid leukemia (CML) treatment can feel like walking on a tightrope. You want the best results possible, but these medications can also lead to unwanted risks and side effects. For some people, this makes it harder to start and stay on CML treatment long term. Others may face obstacles that make it harder to get an effective CML treatment plan, which can lower their chances of success.

In this article, we’ll discuss four facts about CML therapy and why it’s important to stick with your medications to get the best outcome possible. We’ll also cover common barriers people face and how you can work with your doctor to find and stick with the best treatment plan for you.

1. Side Effects Can Make It Harder To Stick to CML Treatment

CML is a blood cancer that affects the cells in the bone marrow that make blood. Abnormal leukemia cells grow quickly and fill the bone marrow and blood. Most CML treatments focus on blocking leukemia cell growth.

All medications — even those sold over the counter — come with side effects. Your doctor will discuss the potential risks and benefits of your CML treatments to help you choose a plan that’s likely to work well for you. Your side effects depend on the type of medication you take and details about your health.

It’s important to stick with your CML treatment plan as closely as possible. Studies show that skipping TKI doses negatively affects survival and response rate.

Tyrosine kinase inhibitors (TKIs) block signaling proteins that leukemia cells use to grow and divide. Examples of TKIs include:

• Asciminib (Scemblix)
• Bosutinib (Bosulif)
• Dasatinib (Sprycel)
• Imatinib (Gleevec)
• Nilotinib (sold under brand names Tasigna and Danziten)
• Ponatinib (Iclusig)

Common side effects of these medications include:

• Nausea and vomiting
• Diarrhea
• Fatigue or extreme tiredness
• Headache
• Skin rashes
• Fever

• Edema (swelling caused by fluid buildup)

Side effects can range from mild to severe. Fortunately, the Leukemia & Lymphoma Society notes that most problems become less noticeable or fade away over time. Your doctor may also prescribe other medications or recommend tips to help manage unwanted side effects.

Everyone reacts to medications differently — you may have fewer or milder side effects — or more severe ones than others taking the same CML treatments. For some people, the side effects from these medications can be too much to manage. They eventually stop taking the drugs because they feel worse, or they don’t think they’re working.

TKIs can harm a developing fetus and are generally not recommended during pregnancy. If you’re planning a pregnancy, talk with your doctor about safer treatment options.

2. Some People Struggle With Taking Daily CML Medications

Most people with CML take a daily TKI medication. Some people prefer taking a pill every day over traveling to clinics for chemotherapy infusions. For those who have trouble remembering daily TKIs, skipping a dose can negatively affect their outlook with CML.

There are several reasons why you might skip a drug dose. Maybe you’re forgetful or have a health condition that makes it harder to remember to take your medication every morning. Other people avoid their TKI to stop unwanted side effects — even if they’re mild.

However, it’s important to stick with your CML treatment plan as closely as possible. Studies show that skipping TKI doses negatively affects your survival and your response rate. In other words, skipping doses may make it harder for you to live as long as possible with CML.

Cancer Research UK offers many tips to make taking daily CML medications easier:

• Learn about common side effects and what to expect from your medications.
• Ask your doctor to arrange your treatment schedule to best fit your daily routine.
• Set alarms to remind you when to take medications.
• Talk to your doctor about other treatments to manage your side effects.
• Consider making diet changes to avoid side effects like nausea or diarrhea.
• Set reminders in your phone or on your calendar for when to refill your prescriptions so you don’t run out of medication.

3. High Costs Might Make It Difficult To Afford CML Treatment

It’s no secret that the cost of many cancer treatments — including CML therapies — can run high. TKIs are expensive, which makes it harder for some people to afford them. Some insurance plans cover more of the cost of medications than others. Your costs depend on your benefits.

If you have trouble paying for your CML medication, talk to your cancer care team. They can connect you with resources that may help lower prices and improve access to your treatments.

Studies show that higher costs prevent people from starting and staying on TKIs. One report found that 21 percent of people with CML didn’t take any TKIs. When costs were lowered through special programs, more people started taking these medications. Those who didn’t take TKIs ended up paying more money for inpatient hospital visits. They also had worse survival compared to those who took TKIs.

If you have trouble paying for your CML medication, talk to your cancer care team. They can connect you with resources that may help lower prices and improve access to your treatments. Many drug manufacturers offer coupons and copay cards to cover some or all of the costs.

4. Other Personal and Social Challenges Can Disrupt CML Treatment

Researchers have also found that some people with CML have other barriers that affect access and use of CML treatments. One report noted that racial differences affected how well people stuck to their CML treatment plan. The authors found that non-Hispanic Black participants had a harder time taking their medication as prescribed compared to white participants.

The study also highlighted several reasons why people had trouble taking their CML medications as often as they should. They included:

• Difficulty affording medication
• Concerns about side effects or medication effectiveness
• Managing multiple medications for comorbidities (other health conditions)
• Mental health challenges, including depression and stress

Be open with your cancer care team about your mental health and the stressors in your life. Getting support for your mental health can help you better manage your CML and stick with your treatment plan.

Other studies have looked into how depression affects CML treatment plans. One report found that people who were at a high risk of depression or financial struggles were less likely to stick to their treatment plan. Stress and personal barriers can affect your overall quality of life and your ability to take scheduled medications.

Be open with your cancer care team about your mental health and the stressors in your life. Many people living with CML also experience anxiety, stress, and depression. Research published in the journal Leukemia & Lymphoma found that factors linked to anxiety and depression include:

• Living with chronic health conditions, including CML
• Taking TKIs for an extended time
• Being female
• Having a lower education level

Getting support for your mental health can help you better manage your CML and stick with your treatment plan.

Some people may also become resistant to TKIs after a certain amount of time, which means the treatment doesn’t work anymore. Considering the side effects, costs, and barriers to getting CML therapy, it’s good to know which TKI is best for you. In this case, your doctor may want to perform a blood test to check which drug you would benefit from the most. Testing for certain gene changes (called tyrosine kinase domain mutations) in people with CML helps show why treatment may not be working. Based on the test results, you may need to be switched to a different type of TKI.

Stay in Touch With Your Cancer Care Team

Sticking to your CML treatment plan is key to improving your outcomes. Be sure to talk to your cancer care team about any new side effects and difficulty affording treatment. They’ll work with you to adjust your treatment plan to minimize side effects and discomfort. They can also find ways to lower costs and help you stay consistent with treatment. Schedule regular follow-ups with your team to monitor your progress and make adjustments as needed.

Doctors and researchers are always looking for new and better ways to treat CML. Your healthcare provider may also recommend trying a new drug in a clinical trial. These new drugs may help you avoid unwanted side effects and improve your quality of life.

Connect With Others Who Understand

On MyLeukemiaTeam, the social network for people with leukemia and their caregivers, more than 20,000 members come together to ask questions, give advice, and share their experiences with others who understand life with different forms of leukemia.

Have side effects, costs, or other barriers prevented you from sticking with your CML treatment plan? Have you worked with your doctor to address them? Share your experiences in the comments below, or start a conversation by posting on your Activities page.