Living With Chronic Myeloid Leukemia

Chronic myeloid leukemia (CML) and its treatment can affect your life in many ways. But there are things you can do to deal with the challenges head-on.

Handling Side Effects

Targeted therapies called tyrosine kinase inhibitors (TKIs) are the main treatment for CML. They can keep cancer in check for years. But they can also cause side effects like:

To fight fatigue, try to keep a healthy balance between resting and being active. It’s OK to ask friends and family for help with cooking, chores, pets, and your kids when you need to.

There are many ways to combat nausea, but they don’t work for everyone. Your doctor may suggest anti-nausea medicine. (Be sure to find out if your insurance will pay for it). Acupuncture -- a type of alternative medicine using thin needles -- is also a good bet. It can help when you’re feeling nauseated or tired, or in pain because of cancer treatment. Other options you should discuss with your doctor include:

To get rid of diarrhea, avoid milk products and fizzy or sugar-free drinks. Stay away from spicy or greasy foods, too. They make things worse. Probiotic supplements -- they help balance the bacteria in your gut -- might help get things back to normal.

Keep a symptom diary. Write down all the symptoms you have and when they happen. You can put it in a journal or in an app on your phone. Make sure to include:

  • What you’re feeling
  • What day it is
  • About what time you start to notice

This tracks side effects so you can manage them better. For example, if you realize you’re more tired in the morning or after lunch, plan to rest at those times.

Tell your doctor. Ask if you can take less medicine. This can help cut down on side effects.

Paying for Treatment

CML treatment costs a lot, even when you have insurance. The exact price depends on your insurance, where you live, and whether you take a generic or brand-name drug.

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To cut costs:

Know what you owe. Get in touch with your insurance company, Medicare, or Medicaid. Ask about copays, deductibles, and other costs before you start treatment. That way, you can plan ahead for out-of-pocket costs.

Ask for financial help. Tell your social worker and care team if you can’t pay for treatment. They may be able to get you lower-cost medicine or help with copays. You can also contact the American Cancer Society. It can help if you lose or are about to lose your insurance. Other groups, like the Cancer Financial Assistance Coalition, can help you find ways to pay for child care, or help get you rides to the doctor.

Get samples. Before you fill your prescription, ask your doctor for samples of your medicine. That way, if it causes strong side effects or doesn’t work for you, you’re not out any money.

Choose generics. Be sure to ask your doctor about generic versions of your medicines. They usually cost less than brand-name forms.

Check your bills. Go over your medical bills carefully. Sometimes people are charged too much, or they’re charged for things they didn’t get. If you think your bill is wrong, speak up. Ask your social worker or a trusted family member to help sort things out.

Self-Care

When you have CML, you have a lot on your plate. You have to juggle family, work, and bills -- all while you go through treatment every day. These tips can make life easier:

Talk to your boss. It can be tough, but it’s important to tell your boss you have cancer. Find out if you can work from home, have flexible hours, or leave early when you don’t feel well. You might also be able to take a medical leave under the Family and Medical Leave Act.

Talk to your partner. Cancer treatment may change the way you feel about yourself and your body. And side effects like nausea, pain, and fatigue can make you lose interest in sex. Be open and honest with your partner when you’re not in the mood. There are many ways to be intimate. If you do have sex, it’s important to use birth control. Pregnancy during CML treatment harms both mom and baby.

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ExerciseThink of it as an essential part of your treatment. It boosts energy, mood, and strength, improves your overall health, and eases stress. Try to jog, walk, or bike at least 150 minutes each week. Get in a couple of sessions of weightlifting every week, too. To get started, ask your doctor for a referral to a physical therapist or program for people with cancer.

Eat well. Healthy food gives you the energy and nutrients your body needs to deal with cancer. It can also help with side effects and even make your treatment work better. Eat more plants, whole grains, nuts, fish, and healthy fats like avocados and olive oil. (Olive oil contains compounds that may protect against cancer). Avoid pomegranates and grapefruit -- they can cause a serious reaction with CML medicine. Cut way down on sugar, red meat, and processed food.

WebMD Medical Reference Reviewed by Nayana Ambardekar, MD on June 23, 2019

Sources

SOURCES:

American Cancer Society: “Treating Chronic Myeloid Leukemia,” “Targeted Therapies for Chronic Myeloid Leukemia,” “Living as a Chronic Myeloid Leukemia Survivor,” “Medicines to prevent and treat nausea and vomiting.”

University of Wisconsin, Madison School of Medicine and Public Health: “Top 5 Benefits of Acupuncture in Cancer Care.”

OncoLink: “Ginger: Health Benefits and Dietary Recommendations During Cancer Treatment.”

American Cancer Society: “Diarrhea.”

European Journal of Oncology Nursing: “Use of a symptom diary during chemotherapy: A mixed-methods evaluation of the patient perspective.”

American Cancer Society: “Treating Chronic Myeloid Leukemia by Phase.”

Journal of Oncology Practice: “Journey of Generic Imatinib: A Case Study in Oncology Drug Pricing.”

National Cancer Institute: “Managing Costs and Medical Information.”

Leukemia & Lymphoma Society: “Work, School & Finances.”

Harvard Health Blog: “Exercise as part of cancer treatment.”

American Institute for Cancer Research: “Reducing Cancer Risk with Mediterranean Diet: Your Questions Answered.”

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