Chronic Myeloid Leukemia
Supportive Care
Many areas of your life may be affected by CML, and it is important to realize that you are not expected to shoulder everything alone. While your medical team focuses on treating the disease, other specialists can help you navigate some of the physical, psychological, social and spiritual aspects of your CML. These services are known as supportive care, and they can begin as early as the day you receive your diagnosis or at any time throughout your cancer care.
Also referred to as palliative care, comfort care and symptom management, supportive care is designed to better position you for the cancer-related challenges ahead. Studies have shown that integrating palliative care into a patient’s usual cancer care soon after a diagnosis of advanced cancer can improve their quality of life and mood, and may prolong survival.
Palliative care is often confused with hospice care. Palliative care services may be used at any time during the cancer care continuum, while hospice care focuses on end-of-life care.
You may receive these services from an advanced practice nurse, physical therapist, dietitian or palliative medicine specialist who has extra training in symptom management. These services may be offered at a hospital, cancer center or medical clinic.
To ensure that your supportive care meets your unique needs, you’ll work closely with palliative care specialists or other members of your health care team.
Physical Side Effect Management
Though cancer treatments typically have side effects, keep in mind that you likely won’t have all of them and that every person responds differently, even to the same type of treatment.
Talk with your doctor ahead of time about side effects to watch for and what to do if they occur.
Tell your palliative care team about any pain, discomfort or other side effects you have. Track your symptoms and side effects, including what you feel, how often, the time of day it happens and how bad it is. Share your notes with your palliative care team to make it easier for them to pinpoint the cause of the problem and treat it.
Today, there are many ways to relieve symptoms and side effects. To provide relief for physical side effects, your palliative care team may draw on resources from the following areas: pain management; nutrition counseling; physical, occupational and speech therapies; complementary medicine and others.
Be alert for side effects that may develop long after treatment has started or even after it ends. These are known as “late effects.” Late side effects or medical conditions can develop months or years after treatment has started or ended.
Potentially severe side effects may occur with certain types of treatment. Talk with your doctor before beginning treatment to ensure you know what to do if one occurs and if any require immediate medical help.
Some severe side effects may include the following:
Fluid retention, or edema, is swelling caused by an abnormal amount of fluid in the body. It can occur in the feet, legs, hands, arms, face, chest and abdomen. When this happens in the abdomen, it is called ascites; around the lungs, it is called pleural effusion; around the heart, it is called pericardial effusion.
Gastrointestinal problems, including diarrhea, constipation, stomach indigestion and pain, may occur.
Heart complications may occur. Ask your doctor about symptoms to be aware of.
Infection can occur as a result of a low white blood cell count (neutropenia) or other factors.
Contact your doctor immediately if you have an oral temperature over 100.4 °F; chills or sweating; body aches, fatigue with or without fever; coughing, shortness of breath or painful breathing; abdominal pain; sore throat; mouth sores; painful, swollen or reddened skin; pain or burning during urination; pain or sores around the anus; or vaginal discharge or itching.
Liver toxicity may occur. Ask your doctor about symptoms to be aware of.
Myelosuppression is a condition in which bone marrow activity is decreased, resulting in fewer red blood cells, white blood cells and platelets.
Tumor lysis syndrome can occur after treatment of a fast-growing cancer, especially certain leukemias and lymphomas (cancers of the blood). As tumor cells die, they break apart and release their contents into the blood. This causes a change in certain chemicals in the blood, which may cause damage to vital organs, including the kidneys.
Pancreatitis is inflammation of the pancreas. Abdominal pain is the primary symptom.
Some additional physical side effects that you may experience are listed below. Monitor for these and any other new symptoms or health concerns and discuss them with your doctor.
Abdominal pain related to nausea, diarrhea, constipation and other gastrointestinal issues, may occur.
Anemia is an abnormally low red blood cell count. Fatigue, shortness of breath, headaches, insomnia and bleeding problems are some of the symptoms of anemia.
Constipation is difficulty passing stools or having less frequent bowel movements compared to your usual bowel habits. Other symptoms may include painful bowel movements and feeling bloated, uncomfortable and sluggish.
Diarrhea is frequent loose or watery bowel movements and is measured against your regular bowel habits. Diarrhea can become serious if left untreated. Tell your doctor if diarrhea is keeping you homebound or otherwise interfering with your daily activities. Severe diarrhea can cause dehydration and other health problems.
Fatigue is marked by extreme tiredness and inability to function due to lack of energy. Though you may feel as if you get enough sleep, cancer-related fatigue may be strong enough to affect your daily life. If this happens, tell a member of your care team.
Graft-versus-Host Disease (GvHD) occurs after a stem cell transplant when white blood cells from a donor recognize healthy cells in your body as foreign and attack them. Graft-versus-Host Disease can be severe and even life-threatening, causing damage to your tissues and organs, especially the skin, liver, intestines, eyes, mouth, hair, nails, joints, muscles, lungs, kidneys and genitals.
Nausea and vomiting. Nausea is feeling queasy and sick to your stomach, like you might throw up. Vomiting is throwing up the food and liquid in your stomach.
Neuropathy is a nerve problem that causes pain, numbness, tingling, swelling or muscle weakness in different parts of the body. It usually begins in the hands or feet and gets worse over time.
Neutropenia is an abnormally low white blood cell count. Being neutropenic means you have a higher risk of getting serious infections because you do not have enough neutrophils, a type of white blood cell, to kill organisms that cause infection.
Rash can occur in one area of the body or all over. It can affect the skin’s texture or color and may look inflamed or irritated. The skin may be red, warm, scaly, bumpy, dry, itchy, swollen or painful. It may also crack or blister. Tell a member of your palliative care team at the first symptom so it can be managed before it worsens.
Thrombocytopenia is a condition of fewer-than-normal platelets in the blood, which can lead to easy bruising and excessive bleeding.
Caring For Your Emotional Health
A cancer diagnosis can cause feelings of distress that affect your mental, physical, social and spiritual being. You may experience a range of emotions, from sadness and anger to anxiety and depression. These feelings, and all others you experience, are valid. It is normal to be concerned about how cancer treatments will affect your health, family and daily life.
Various situations, such as the following, can trigger distress:
- Receiving a cancer diagnosis
- Undergoing tests to diagnose or monitor your condition.
- Being hospitalized
- Experiencing severe side effects or life-altering common side effects
- Hearing that the cancer has advanced or returned
- Learning that treatment is ineffective
Taking care of your emotional well-being will help you handle the challenges of cancer treatment. Consider addressing these feelings with the following resources:
- A counselor, psychologist, psychiatrist, nurse or another specialist.
- Support groups. Some offer one-on-one buddy programs that pair you with another person who has the same type of cancer as you. Talking with someone who has gone through a similar experience can be invaluable. In addition, telephone and email cancer helplines and advocacy groups are available.
- Exercise. It may reduce the risk of anxiety and depression. Research shows that regular exercise can greatly improve mental health at any time during treatment. Even if you were not active before being diagnosed with CML, a customized exercise program can be a benefit.
- Stress management and relaxation techniques, such as yoga or meditation.
Contact your doctor about excessive crying or continued feelings of hopelessness or despair. Get immediate medical attention for thoughts of suicide or death.
Address Practical Cancer-Related Issues
Coordinating cancer care can be complicated and may require resources you do not typically have:
- Transportation to and from medical appointments and treatments
- Child care
- Help with personal care
- Housekeeping
- Food preparation
The social worker on your palliative care team or at the hospital can help you make a plan to manage these and other types of everyday challenges.
Spiritual support may be a welcome resource. People sometimes question their beliefs or the meaning of life when faced with a serious illness. You can share your concerns with a chaplain or spiritual care advisor. Many hospitals offer a chaplain who is trained to talk about spiritual concerns such as life and death, regardless of your faith.
If you don’t know where to find spiritual support, ask your palliative care team for a referral.
Financial support to help with the unexpected costs related to cancer treatment may be available. A social worker or financial counselor may be available to connect you with resources.
Dietary support may be necessary if eating becomes a challenge due to treatment. Some side effects may make it difficult to eat, preventing you from getting the nutrition your body needs, which is crucial during cancer treatment. A dietitian can work with you and your caregiver to develop a nutrition plan specifically for you.
Financial Options for Palliative Care
The costs related to cancer care can add up quickly. It’s important to use all the resources available to you. Check to see if your private health insurance covers palliative care as part of your cancer treatment.
Medicare and Medicaid usually pay for some palliative care. Medicare is the U.S. government’s health insurance for older people. Medicaid is government health insurance for people who earn less than a certain amount. Medicare Part B pays for some medical services that address symptom management, and Medicaid covers some palliative care services but they vary by state.
If you do not have health insurance or Medicare or Medicaid, a hospital social worker or financial counselor may be able to help you find ways to pay for the care you need.
