Acute Myeloid Leukemia
Supportive Care
Cancer treatments are typically accompanied by a range of side effects. Knowing what to expect and how to manage them should they occur will help you feel more in control. Your multidisciplinary health care team will introduce you to supportive care services that can address the physical, emotional, practical, spiritual, financial and family-related challenges of having cancer.
Some side effects are simply an inconvenience, while others can disrupt your quality of life. Still others have the potential to be life-threatening, making it critical that you know what to do if one occurs. Your health care team will rely on you to communicate openly about how you feel.
Potentially severe side effects
Ask your doctor whether you are at risk for serious side effects. If you are, find out how to identify the symptoms and report them immediately if they occur.
- Infection can occur as a result of a low white blood cell count (neutropenia) or other factors. Contact your doctor immediately – do not wait until the next day – if you have any of these symptoms: oral temperature over 100.4 °F, chills or sweating; body aches, chills and fatigue with or without fever; coughing, shortness of breath or painful breathing; abdominal pain; sore throat; mouth sores; painful, swollen or reddened skin; pus or drainage from an open cut or sore; pain or burning during urination; pain or sores around the anus; or vaginal discharge or itching. If you cannot reach your doctor, go to the emergency room.
- Cytokine release syndrome can occur with CAR T-cell therapies if immune cells affected by treatment rapidly release large amounts of cytokines, which are a type of protein, into the bloodstream. Symptoms may include headache, fever, nausea, rash, low blood pressure, rapid heartbeat and difficulty breathing.
- Infusion-related reactions may occur with some intravenous (IV) treatments. Most reactions are mild with symptoms such as chills, fever, nausea, headache and skin rash. Some can be serious and even fatal without medical intervention. Symptoms such as shaking, chills, low blood pressure, dizziness, breathing difficulties or irregular heartbeat can be serious or even fatal without medical intervention.
- Tumor lysis syndrome (TLS) may occur after treatment. Symptoms may include vomiting, diarrhea, muscle cramps or twitches, neuropathy (numbness or ting-ling in your fingers, toes, arms or legs) and decreased urination.
- Graft-versus-Host Disease (GvHD) may occur with an allogeneic stem cell transplant. Call your doctor immediately if you have dryness of the eyes and mouth; tightening, blistering or burning of the skin; jaundice; fever; sudden weight loss; or abdominal pain, bloating or diarrhea.
Common side effects
Many people begin by getting help to manage side effects and pain. You may receive these services from an advanced practice nurse, physical therapist, dietitian or palliative medicine specialist who has extra training in symptom management. They may be available at your hospital, cancer center or medical clinic and are often covered by individual insurance plans, Medicare and Medicaid. To learn more, you can talk with the hospital’s social worker, financial counselor or your health insurance representative.
Table 1 lists several common side effects from AML and its treatments. Keep in mind that not every person reacts in the same way. Some side effects may be more intense when more than one therapy is given.
Contact your medical team by phone or the online portal when a physical or emotional side effect or symptom begins so it can be treated or managed immediately.
Other types of support
Supportive care extends to other areas and is also available to your children, family members, caregivers and others close to you. Ask your health care team for referrals to trusted sources. You do not have to go through this alone.
Social support is available in many forms. You may choose to speak with a therapist or attend an online, telephone or in-person support group. Participants openly share what they have learned from challenges with treatments, in their relationships or careers and in other areas. Many advocacy programs offer one-on-one buddy programs that pair you with another person who has the same type of cancer. It can be extremely helpful to share your feelings with people who understand what you are going through.
Spiritual guidance, even if you do not consider yourself a religious person, is available from a chaplain at the hospital or from your religious community.
Financial counseling can help relieve the stress and anxiety of paying for treatment and other related expenses. Knowing the costs of treatment and related expenses and making a plan may help you feel more in control. Counseling about nutrition, fitness, mental health, physical/occupational therapy, speech therapy, complementary medicine and other areas is also available.
Table 1. Common Side Effects
Side Effects | Symptoms |
Anemia | Low energy, weakness, dizziness, light-headedness, shortness of breath, rapid heartbeat |
Bone loss | Weakened bone caused by the cancer or treatment |
Bruising and bleeding (thrombocytopenia) | Low number of platelets in the blood, which can lead to bruising and bleeding |
Cardiotoxicity | Heart damage that may arise from some cancer treatments. Ask your doctor whether you are at risk and the symptoms that require immediate attention. |
Chemo brain (cognitive dysfunction) | Brain fog, confusion and/or memory problems |
Constipation | Difficulty passing stools or less frequent bowel movements compared to your usual bowel habits |
Decreased appetite | Eating less than usual, feeling full after minimal eating, not feeling hungry |
Diarrhea | Frequent loose or watery bowel movements |
Fatigue | Tiredness that is much stronger and harder to relieve than the fatigue an otherwise healthy person has |
Fever | Raised body temperature that could signal an infection |
Hair loss (alopecia) | Hair loss on the head, face and body |
Headache | Pain or discomfort in the head |
Leukocytosis | Elevated white blood cell count that may involve fever, fatigue, weakness, dizziness or nausea |
Mouth sores | Tiny sores in the lining of the mouth and gums, tongue, roof of mouth and/or lips |
Nausea and vomiting | The feeling of needing to throw up and/or throwing up |
Neuropathy | Numbness, pain, burning sensations, and tingling, usually in the hands or feet at first |
Neutropenia | Low white blood cell count that increases the risk of infection |
Pain | Pain and aches that occur in the muscles, bones, tendons, ligaments or nerves |
Respiratory problems | Shortness of breath (dyspnea) with or without cough, upper respiratory infections |
Skin reactions | Rash, redness and irritation, or dry, flaky or peeling skin that may itch |
Prepare for a Range of Emotions
Receiving a cancer diagnosis is shocking, and acknowledging your feelings is necessary for your well-being. The following are common emotions you may have and suggestions for working through them.
Anxiety can begin as soon as you receive your diagnosis. Moderate to severe anxiety may be treated with medication, therapy or both. Explore calming techniques, such as meditation, muscle relaxation, yoga or guided imagery.
Depression is a psychological reaction to your situation as a whole. Do not avoid talking to your doctor about it because you think depression is just part of having cancer. Talk with your doctor if you feel hopeless, helpless or numb. If you have thoughts of death or of attempting suicide, seek medical attention immediately.
Doubt can lead to questions about the meaning of life and its purpose. Some people find strength in support from family, friends, the community or spirituality. It may also help to open up to a counselor or support group.
Fear is common, especially when you think about the future. Do your best to stay focused on the present.
Guilt may occur if you feel you are a burden to loved ones or if you wonder why you are surviving when others did not. Talk with a therapist about these feelings.
Scanxiety can happen when you are awaiting results from imaging scans, laboratory tests or follow-up exams. It is normal to be nervous. Talk with your doctor or nurse so you can know when to expect results. Keep your mind occupied with things you enjoy, such as reading, playing games or gardening.