Leukemia: Supportive Care for Acute Patients
When many people think of cancer care, they may think of traditional treatments such as chemotherapy, surgery, and radiation. These treatments are used to get rid of cancer cells in the body. But there is another form of care that many people with cancer also receive called supportive care. Supportive care does not fight the cancer, but it can improve the overall health or quality of life for a person with cancer. It can include dealing with side effects of cancer and its treatments, such as fatigue and pain, learning about the condition and treatment, and getting nutritional and psychological support. For leukemia patients, supportive care is an important part of helping the patient get through treatment.
People with acute leukemia need supportive care more than people with chronic leukemia. People with chronic leukemia have intermediate-aged blood cells that do not fight infections like mature cells because they are cancerous. However, they also have older cells that do work. The immature cells grow slowly, which means that the disease is more gradual and not as serious or immediate as acute leukemia. In people with acute leukemia, the immature cells grow quickly, so that there are not enough normal cells functioning. Acute leukemia needs to be treated immediately. Acute leukemia is treated with chemotherapy, radiation, biologic therapy, bone marrow transplants, or stem cell transplants. Leukemia and its treatments can cause many side effects. Some of the most serious side effects have to do with bone marrow suppression, which can cause anemia, neutropenia (increased risk of infection), and bleeding.
The Role of Bone Marrow in the Body
When we think of bones, we may think that their primary purpose is to give us support and to protect some of our internal organs, such as the heart and lungs or the brain. But the inside of our bones also have an important job. Bone marrow produces the components of blood – red blood cells, white blood cells, and platelets. Each of these have vital functions. The red blood cells carry oxygen throughout the body and help rid the body of carbon dioxide. The white blood cells fight infection. Platelets help the body stop bleeding. Because leukemia is a cancer of the bone marrow cells, it can affect the bone marrow's ability to produce healthy blood components.
"The most common problems due to leukemia and its treatment are related to bone marrow suppression," says Debra Wujcik, RN, MSN, AOCN, of the Vanderbilt Cancer Centers and editor of the Oncology Nursing Society's ONS News. "If the bone marrow is being crowded with leukemia cells or if the effects of chemotherapy cause there to be less production of blood cells, the bone marrow cannot produce enough normal blood cells. The result is decreased white blood cells, red blood cells, and platelets."
A patient's healthcare team will check for bone marrow suppression problems through frequent blood count tests. Through these tests, the lab technician and doctor can tell if any of the blood cells are low. Once diagnosed, the patient can then begin treatment and a program of supportive care with help from family and friends. Treatment for bone marrow suppression problems is just as important as treatment for leukemia because having healthy blood will help the person to remain healthy longer and fight the the leukemia better.
Growth factors may be given to stimulate growth of normal blood cells. According to Wujcik, many growth factors may be given subcutaneously (under the skin with an injection), so patients and family members may need to learn how to given injections and to watch for side effects.
Supportive Care for Low Red Blood Cells
A decreased number of red blood cells is called anemia. People with anemia may lack energy or feel tired, as if they never get enough sleep. Other symptoms can include dizziness, an increased heart rate, headaches, shortness of breath, or loss of appetite or concentration. Treatment for anemia may include the growth factor erythropoietin (Procrit®). However, Wujcik notes, "It takes weeks to months before effects are seen, so it is not used as frequently in patients with leukemia." A blood transfusion may also be necessary for patients with severe anemia.
To support the person with anemia at home, family members should be prepared to take on some of the tasks that the patient normally does. A quick trip to the grocery store for milk or even walking across the room to answer the phone may seem like a huge task to someone with little energy. Wujcik suggests that family members draw up a ‘to-do' list since it is easy to become overwhelmed with the tasks of caring for children, managing a household, and tending to the needs of the patient. "That way, when a friend calls offering help, they can immediately be given an assignment. Most people really do want to help."
Supportive Care for Low White Blood Cells
People with neutropenia have a decreased number of white blood cells, which causes an increased risk of infection. For people with leukemia, infection can be a dangerous issue since the immune system is already weakened. A common cold can quickly turn lead to a dangerously high fever. Treatment for neutropenia may include the growth factors granulocyte colony stimulating factor (G-CSF) (Neupogen®) or granulocyte-macrophage colony stimulating factor (GM-CSF) (Leukine®).
Wujcik says that the side effects for both the growth factors vary slightly. "The most common side effect with G-CSF is bone pain that is easily controlled with acetaminophen. The GM-CSF sometimes causes flu-like symptoms and swelling." Acetaminophen can be found in products like Tylenol®.
It is important for patients and caregivers to keep a close eye on any infections. To prevent a serious infection, patients should limit exposure to germs and other harmful agents through regular hand-washing, avoiding exposure to large crowds, wearing a face mask while in public, and avoiding gardening or changing cat litter to avoid bacteria in the dirt. Patients with neutropenia should also stay away from uncooked fresh fruits and vegetables, undercooked meats and eggs, and fresh-cut flowers and plants. Signs of a serious infection in a person with neutropenia include a fever over 100.5° F (38° C), persistent cough, shortness of breath, burning or pain with urination, a desire to urinate frequently, sore mouth or throat, shaking or chills, diarrhea or constipation, any area with unusual redness or swelling, or a change in mental status. If the patient or caregiver notices any of these signs, he or she should call the healthcare team immediately. Temperatures should be taken orally. Using a rectal thermometer could lead to bleeding or infection if white cell count is low.
"Protective isolation may be used in the hospital during periods of time when the patient is most at risk for infection," adds Wujcik. The isolation usually only lasts while the white blood cell count is low, but during that time, the patient may be alone in a hospital room. Visitors may be restricted, and the patient may have to wear a mask when others are in the room. Patients may feel lonely or cut off. Family and friends can provide support through telephone calls, letters, and cards or even email in some hospital settings to ease the loneliness.
Supportive Care for Low Platelets
Platelets control blood clotting, so when somebody lacks platelets, he or she is at greater risk of internal and external bleeding. When most people think of bleeding, they may think of an injury or an open wound, but bleeding may also be slow or under the skin. In some cases, the bleeding may be obvious, such as nosebleeds or blood in saliva, mucous, vomit, urine, vaginal discharge, the whites of the eyeball, or stools. The blood may also appear under the skin as rashes, bruises, or blood blisters. In some cases, the patient may not be able to see the bleeding, but will have signs of bleeding such as severe headaches, increased weakness, difficulty waking up, or pain in the joins or muscles. If the patient is bleeding, he or she should contact the healthcare team immediately.
Preventing bleeding is important for people with low platelets. To avoid cuts, people can shave using an electric razor, avoid falls and contact sports, and use lotion to prevent the skin from drying and cracking. To avoid bleeding in the mouth, patients should use soft-bristle toothbrushes or toothettes to prevent gum bleeding. They should use a mouthwash that does not contain alcohol, which can dry the mouth. Also, it is important to have normal bowel movements to avoid straining and constipation. This can be done by maintaining a proper diet, drinking enough fluids, and exercise, if possible. If constipation does occur, use a stool softener or laxative. Do not use rectal suppositories or enemas.
Beyond Supportive Care for the Body
Supportive care is not just for physical problems. Dr. Ernest Rosenbaum, Director of the Cancer Supportive Care Program at Stanford University's Complementary Medicine Clinic and Clinical Professor of Medicine at the University of California – San Diego defines supportive care as "a way of promoting a better coping with the disease." It can include everything from getting more information about the disease to getting proper nutrition and exercise to getting emotional support. A proper balance of all these things leads to an improved quality of life.
Rosenbaum and his colleagues offer a unique supportive care program at Stanford called the Cancer Supportive Care Program (CSCP). The program is a team approach including the patient, the healthcare team, physical therapy, clergy, hospice, occupational therapy, and recreational therapy. According to the CSCP web site, the team approach enables the patient to "better cope with the myriad of challenges that accompany the diagnosis and treatment of cancer." Programs are available that can help a person combat fatigue, poor nutrition, lack of exercise, pain, sexuality problems, and much more.
"The bottom line is that when you have leukemia or any form of cancer, the real goal is being cured, but if you don't have quality of life, it means nothing," says Rosenbaum. "If you get depressed, you have a grave problem just going through therapy. People often stop therapy. It takes a lot of courage."
Wujcik agrees. "Emotional support is very important since treatment for leukemia can take months. The patient may experience anxiety, depression, and grief. The feelings can return over and over if the patient relapses after initial treatment."
Rosenbaum's book, "Supportive Cancer Care," addresses all of these issues in detail and is available in bookstores and libraries.
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