You’ll live with and treat your chronic myeloid leukemia (CML) for the rest of your life. You won’t always look or feel sick, even when you’re in active treatment. But there are many ways CML will affect your everyday life.
Here are a few challenges you may face as you live with CML.
Daily pills. A common long-term treatment for CML is a pill called a tyrosine kinase inhibitor (TKI). For a TKI to work, you have to take it exactly as directed. If you miss or change a dose, it may not be effective.
It’s a mental burden, but a critical one to take on. Talk to your doctor about ways to keep up with your medication schedule. There are tools you can use to relieve some mental stress, including phone reminders, pill calendars, and new routines that prompt you to remember your daily doses.
Frequent doctor visits. If you haven’t dealt with many health problems before your CML diagnosis, you may not be used to the time and energy it takes to add doctor appointments to your schedule. You may have chemotherapy IVs, a stem cell transplant procedure, clinical trial visits, follow-up visits for tests, or regular check-ins with your hematologist-oncologist. Whatever the reason for the visit, time at the hospital or clinic will become a big part of your life.
You should expect to see your doctor at least every few months for the rest of your life, if not more often.
Anxiety about lab results. You’ll need blood tests on a regular basis to see how or if your condition is changing and whether treatment is working. Waiting for the results of these tests can make you anxious.
You may feel like you’re constantly in a holding pattern until the results come in. Talk to your doctor ahead of time about what the different possible results will mean for you, so you’re informed and ready no matter what the outcome.
Treatment side effects. It’s not common for side effects of TKI therapy to be severe, but many of the issues you could have can make everyday life a little more difficult. You’re most likely to have:
- Stomach problems
- Diarrhea
- A tired or fatigued feeling
- Muscle and joint pains
If you find that any of these side effects are making you less able to get through your daily life, talk to your doctor. There may be ways to treat side effects while staying on your CML medication.
A weakened immune system. People who have CML are immunocompromised. That means you have a weakened immune system that can’t protect you from germs as well as it should.
Both CML itself and certain treatments, such as TKI therapy and chemotherapy, lower the number of white blood cells, red blood cells, and platelets in your blood. This puts you at higher risk for infection. You will need to take extra care to protect yourself from germs. These are some of the precautions you’ll need to take:
- Get up to date on all recommended vaccines.
- Wash your hands thoroughly and often.
- Wear a mask in crowded areas.
- Avoid public transportation and airplane travel as much as possible.
- Steer clear of people who are sick.
Family planning challenges. If you’re a man with CML and taking TKI therapy, it shouldn’t affect your fertility or put risk on a pregnancy.
Women have a more complicated set of things to consider.
TKI therapy can affect fertility and the health of an unborn baby, so you shouldn’t get pregnant while you’re on it. If you do get pregnant, you’ll need to tell your doctor right away. You may need to stop treatment until the baby is born.
If you want to get pregnant, you may be able to pause your treatment for a while if your CML has been at a very low level for a long time. Your doctor will likely want to wait until you have no signs of CML in tests before you stop your TKI therapy. Then they will closely monitor your CML while you’re pregnant or trying to get pregnant. You’ll restart your treatment after your baby is born.
Don’t stop your CML treatment without talking to your doctor first and discussing the risks of taking a break for a pregnancy.
Uncertainty about the future. Knowing that your cancer will be with you for the rest of your life can be overwhelming. You may feel many emotions, including grief, sadness, anger, depression, and anxiety. Your outlook on life may change drastically.
No one can predict what will happen in the future, but you can manage your worry and fear with certain practices. Try to:
- Learn as much as you can about your CML.
- Express your feelings, either through journaling, talking to a friend or loved one, or in counseling.
- Take up a healthy lifestyle that includes regular exercise, things that lessen your stress, and a nutritious diet.
- Enjoy yourself whenever you can by doing things that make you happy.
It’s normal to feel uncertain when you live with a chronic condition. Take time to recognize and feel your feelings, but also use the tools you can to keep moving forward.
Show Sources
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SOURCES:
Cancer Support Community: “Chronic Myeloid Leukemia (CML).”
National Cancer Institute: “Chronic Myelogenous Leukemia Treatment (PDQ) – Patient Version.”
Cleveland Clinic: “Chronic Myeloid Leukemia.”
Cancer Research UK: “Daily life and chronic myeloid leukaemia (CML).”
Dana-Farber Cancer Institute: “Tips for Staying Healthy with a Compromised Immune System.”
American Cancer Society: “Managing Cancer as a Chronic Illness.”
