Living with chronic myeloid leukemia (CML) is different from living with other types of cancers. Many people don’t look sick during the chronic stage of the disease and have few to no symptoms. CML treatment is also different from the treatment you get for other cancers. Many people with CML take targeted therapy medications daily, which can keep the disease at bay for many years.
Here are some things to consider as you start treatment and adjust to life with CML.
Plan for Follow-Up Care
You’re likely to stay on your CML treatment long-term, and possibly even for life. Recent studies have shown that some people in remission (meaning they have no symptoms and their blood tests show no signs of disease) can stop treatment. But not everyone is able to stop taking medications that manage the disease.
Whether you’re treating your disease or in remission, keep seeing your hematologistoncologist, or a doctor who specializes in blood cancers. During your visits, your doctor will ask you about any symptoms you may be having and whether you’re having side effects from your treatment. They may also do bloodwork to monitor the cancer and your overall health.
It’s important to find a doctor you trust and keep up with these appointments. Ask your doctor how often you should come in for visits, and when and what tests are needed to monitor your cancer.
Also be sure to ask about how your cancer may impact any other health concerns or conditions, go over daily medication needs, ask what symptoms or signs you should watch for, and what lifestyle changes, if any, you should make to improve your health or manage your symptoms.
Before each appointment, it may help to write down your questions (on paper or on your phone) and/or to bring a friend or family member with you for support and write down important information from the conversation.
Manage Your Symptoms
You may have some symptoms from your cancer or side effects from your CML medications or treatment. These symptoms may include:
- Fatigue (extreme tiredness)
- Nausea
- Diarrhea or an upset stomach
- Troubles with digestion
- Cramps
Talk to your doctor about any symptoms and keep track of them in between appointments. Your doctor may do tests, offer alternative times of day or ways to take your medications, and may be able to prescribe other medicines to help with symptoms (such as something for nausea or pain).
Consider Your Work, Study, or Daily Routine
It can be challenging to return to your current job, studies, or daily routines when you have CML. Frequent doctor appointments, cancer-related fatigue, or symptoms of the cancer treatment can all tax your time and energy.
Don’t feel rushed to make any life-changing decisions about your job or school right after your diagnosis. Take time to see how you feel while on treatment, explore your options and needs, and talk to your doctor about how you can manage your disease and work.
It may be helpful to discuss your concerns with your friends and family, your doctor, and your employer before making any changes or drastic decisions. Some slight shifts to your responsibilities, hours, treatment, or routine may help you better manage your work.
When talking to your employer, consider bringing a support person with you. Also make sure you understand your rights. Ask for time to think about any changes and give a final decision at a later date.
Manage Your Emotions
It’s natural to have different feelings throughout your cancer journey. Finding out you have cancer and managing the ups and downs of living with a chronic disease can lead to feelings of frustration, anxiety, and even grief for the life you had before your diagnosis.
Talk to your doctor about any fears, anxieties, or unanswered questions you may have about your cancer, stage of disease, or treatment. Sometimes, getting reassurance or more information may help calm your nerves and fears.
Sharing your feelings with others may also help. Some people find it helpful to talk to their family and friends, while others find it easier to talk to people they don’t know, like cancer nurses or others living with CML. Some people enjoy joining a support group with others living with similar diseases, where they can connect over similar or shared experiences.
If you’d like to join a support group, ask your doctor or search for one through national cancer organizations, such as the American Cancer Society, the National CML Society, and the Leukemia and Lymphoma Society.
Get Organized
Try to stay organized by keeping necessary and important papers and records from your appointments, lab tests, and insurance claims in a safe place. Keep them organized in a way that works for you, such as in labeled filed folders, so you can easily find papers when you need them.
This will be especially helpful if you need to see a new doctor or apply for financial or other assistance programs. In both cases, you will have medical records that show your medical and cancer history.
Figure Out Your Finances
Life with CML can impact your finances in many ways. You may need to take time off from work for appointments or because you’re not feeling well enough to come in. You may also have added expenses like more or higher copays for specialist appointments and the cost of daily medications, such as tyrosine kinase inhibitor (TKI) therapies. This common daily CML medication can get costly over time, even if you have health insurance.
Take some time to look at your income and expenses. It may be helpful to create a family budget, which lays out how much money is coming in and all of your expenses. When you can, add to a savings account for emergencies. Both income and expenses can change, so be sure to monitor your budget regularly.
If you are taking daily medications, consider shopping around for the best price, and talk to your doctor if the cost of treatment for your illness is making it difficult to cover your bills. They can help you find a more affordable treatment option, lower-cost medicines or pharmacies, and connect you to financial assistance programs.
You can also look online for assistance programs for people living with CML through organizations such as the National CML Society, the Leukemia and Lymphoma Society, and the American Cancer Society.
Maintain a Healthy Lifestyle
Healthy lifestyle choices help you feel in control, feel your best, and help you deal with side effects from your cancer or treatment. Try to eat well, maintain a healthy weight, get regular movement and/or exercise, and don’t smoke. Managing your stress and emotions is also an important part of your health.
Talk to your doctor before taking any dietary supplements (in case they can interact with your treatment), and talk to them about other healthy choices that can help you based on your cancer, health, and other medical conditions.
Show Sources
Photo Credit: shapecharge/Getty Images
SOURCES:
American Cancer Society: “Living as a Chronic Myeloid Leukemia Survivor.”
Leukaemia Foundation: “Practical Matters,” “Working and studying,” “Money and finances,” “Useful contacts.”
National Cancer Institute: “Stopping TKI Treatment Is Safe, Improves Quality of Life for Some with CML.”
Cancer Research UK: “Daily life and chronic myeloid leukaemia (CML),” “What you can do to help yourself.”
