A Practical Care Guide for Acute Leukemia: Essential Information for Patients and Families
Summary: This guide is designed for patients with acute leukemia and their families, covering practical care needs from daily routines through active treatment. It includes infection-prevention measures such as laminar-flow bed isolation, nutrition with adequate protein and calories, appropriate rest and activity, and oral and perianal hygiene. It also explains how care may differ for anemia, bleeding - including nosebleeds, gum bleeding, and suspected intracranial bleeding - and infection. Additional sections address PICC care during chemotherapy, ways to manage nausea, vomiting, constipation, and diarrhea, cold compresses after pre-transplant radiotherapy, side-effect monitoring with targeted therapies, and post-transplant GVHD care. Psychological support is also highlighted to help patients and families feel more informed and supported throughout treatment.
Acute leukemia can bring challenges such as anemia, bleeding, and infection, but thoughtful day-to-day care can make the treatment journey safer and more manageable. This guide brings together practical advice on everyday care, symptom management, and treatment support to help patients and families feel more prepared at each stage.
Everyday Care: Creating a Safer, More Supportive Recovery Environment
Routine care forms the foundation of treatment support. Families can focus on four key areas:
1. Keep the Environment Clean and Reduce Infection Risk
Open windows each day to keep indoor air circulating, and avoid keeping flowers, plants, or pets indoors, as they may carry microorganisms.
Patients and family members should wear masks as advised. The source recommends N95 masks as the preferred option, including valved N95 masks for children aged 1-4, while children under 1 year should go out as little as possible. Avoid contact with people who have colds, influenza, or other contagious illnesses.
If a hospitalized patient's white blood cell count is low, the medical team may recommend a laminar-flow bed or another protective environment to further reduce infection risk.
2. Balance Rest and Activity to Avoid Injury
Activity should match how the patient feels. Mild fatigue may still allow short walks, while moderate or severe fatigue may require reduced activity and more bed rest. For patients with an enlarged spleen, the source recommends lying on the left side and avoiding bending or impact to the abdomen to reduce the risk of splenic injury.
Children should be supervised during activity. Avoid running, jumping, or strenuous exercise that could lead to falls, bumps, or bleeding.
3. Support Recovery with Nutrition
Choose foods that are high in protein, calories, and vitamins, such as eggs, milk, lean meat, and fresh fruits and vegetables. Avoid spicy foods and foods that are hard, rough, or sharp, as these can injure the oral lining.
If mouth ulcers develop, cook food until soft or choose easier-to-swallow options such as porridge or soft noodles. Avoid leftovers, pickled foods, smoked foods, and supplements such as cordyceps or ginseng, which may interfere with treatment.
4. Watch Closely and Communicate Early
Check the skin each day for bruising and look for swollen gums. Adults and children should have their temperature checked regularly. If fever develops, the source recommends recording the temperature every 30 minutes.
Symptom-Based Care: What to Do in Different Situations
Anemia, bleeding, and infection are among the most common problems in acute leukemia and require different approaches.
1. Anemia: Adjust Care According to Hemoglobin Level
Care may differ depending on whether anemia is mild, moderate, or severe:
Mild anemia (hemoglobin from the lower limit of normal down to 90 g/L): light activity may be appropriate, but avoid overexertion.
Moderate to severe anemia (hemoglobin below 90 g/L): reduce unnecessary activity and rest in bed when needed. If palpitations or shortness of breath occur, low-flow oxygen may be given as directed by the medical team.
Severe anemia: blood transfusion may be needed. After transfusion, watch for possible reactions such as rash or fever and report them promptly.
2. Bleeding: Stay Calm and Act Quickly
Nosebleed: pinch the soft part of the nose with your fingers and place a cold towel over the bridge of the nose. After 5 minutes, release pressure gently.
Bleeding gums: keep the mouth clean. If bleeding occurs, apply gentle pressure with sterile cotton. Rinse gently for at least 1 minute each time.
Possible intracranial bleeding: if projectile vomiting or loss of consciousness occurs, lay the patient flat with the head turned to one side and contact the medical team immediately while awaiting emergency treatment.
When the platelet count is below 20 × 10⁹/L, there is a risk of spontaneous bleeding even without injury. The source advises bed rest and avoidance of strenuous activity.
3. Infection: Prevention First, Prompt Management When Needed
Preventive measures:
1) Environmental cleaning: the source recommends wiping floors, tables, and door handles daily with a chlorine-containing disinfectant. It also recommends ultraviolet disinfection once a day for 30 minutes, starting the timing 5 minutes after the lamp is switched on. Patients should leave the room during UV disinfection; if a patient cannot leave the bed, the source recommends shielding the eyes and skin with UV-protective covering.
2) Protective isolation: when the granulocyte count is below 0.5 × 10⁹/L, protective isolation may be required, such as wearing isolation clothing and using a laminar-flow bed. Limit the number of caregivers and visitors and reduce contact with people from outside the household or care team.
3) Personal hygiene: follow the principle of "three short, six clean" - keep hair, fingernails, and facial hair short, and keep the hair, skin, mouth, hands and feet, perineum, and perianal area clean.
Preventing Oral Mucositis During Chemotherapy, Radiotherapy, or Transplantation
1) Prevention:
Check the mouth every day for ulcers, pain, or changes in taste.
Choose mouthwash according to the situation: the source recommends a broad-spectrum antibacterial mouthwash for routine use and nystatin rinse when fungal infection is present.
Rinse correctly: hold the mouthwash in the mouth and move the cheeks and tongue so the liquid reaches all areas of the oral mucosa. Rinse for at least 1 minute.
2) Toothbrushing: use a soft-bristled toothbrush when the platelet count is below 50 × 10⁹/L. When the platelet count is below 20 × 10⁹/L, the source advises avoiding toothbrushing and using a gentle mouthwash instead.
Treatment Support: Chemotherapy, Radiotherapy, Medications, and Catheter Care
Care during treatment should closely follow the medical plan, with particular attention to managing side effects and maintaining treatment safety.
1. Chemotherapy Care
A PICC line can be an important access route during chemotherapy. Protect it carefully when dressing or undressing and avoid pulling or tugging on the catheter.
For nausea or vomiting, take prescribed antiemetic medication in advance and rinse the mouth with warm water after vomiting. The source suggests a cup of honey water for constipation and rice water to replace fluids during diarrhea.
Hair loss is temporary. A wig or hat can be prepared in advance, and the scalp can be washed gently with baby shampoo after hair loss begins.
Avoid foods or substances that may harm the liver or kidneys, such as moldy food or excessive medication use. Numbness or tingling in the fingertips may indicate neurotoxicity; keep warm and avoid contact with cold water.
2. Radiotherapy Care
Drink more water the day before radiotherapy. Gently clean the treatment area with warm water and avoid irritating soaps. If the skin peels, do not pull at it - allow it to shed naturally.
After pre-transplant radiotherapy, the source recommends applying cold packs to both cheeks to help prevent parotitis. Rest quietly for 30 minutes after treatment and choose nutritious foods such as fish and spinach.
3. Medication and Catheter Care
Targeted therapies may cause rash. Tell the doctor promptly so the treatment plan can be adjusted if needed. Medications that require refrigeration should be stored in the refrigerator compartment as instructed and protected from direct sunlight.
If the PICC dressing becomes loose, contact a nurse for replacement immediately. When dressing, put the sleeve on the catheter side first; when undressing, remove that sleeve last to reduce the risk of catheter dislodgement.
Diet and Activity: Hydration and Appropriate Exercise
1. Daily Fluid Intake
For adults without edema or a fluid restriction, the source recommends more than 2,000 mL of fluid per day, or about 8 cups. For children, daily fluid needs are estimated by body weight:
Up to 10 kg: 100 mL/kg per day. For example, a 5 kg child would receive about 500 mL per day.
10-20 kg: 100 mL/kg for the first 10 kg, plus 50 mL/kg for each kilogram above 10 kg. For example, a 15 kg child: 10 × 100 + 5 × 50 = 1,250 mL per day.
Above 20 kg: 1,500 mL per day for the first 20 kg, plus 20 mL/kg for each kilogram above 20 kg. For example, a 25 kg child: 1,500 + 5 × 20 = 1,600 mL per day.
For children with diarrhea or vomiting, additional fluid may be needed to replace daily losses. The source gives an example of adding 50-100 mL for each episode of diarrhea.
2. Exercise
When the platelet count is above 50 × 10⁹/L, the source suggests outdoor walking of no more than 5,000 steps per day, while keeping warm.
Two months after hematopoietic stem cell transplantation, if the white blood cell count is above 3 × 10⁹/L, outdoor activity such as walking or tai chi may be increased gradually, while strenuous exercise should still be avoided.
Important: Know the Early Signs of Infection
Tell the medical team immediately if any of the following occurs, so a possible infection can be assessed promptly:
1. Axillary temperature above 37.5°C, or an abnormal temperature in a child;
2. Chills or shaking;
3. Cough, runny nose, or sore throat;
4. Burning with urination, urinary frequency, urgency, or pain, which may indicate a urinary tract infection;
5. More than two episodes of loose stool in one day, which may indicate an intestinal infection;
6. Redness, swelling, or pain around the perineum, genitals, or anus; 7. Redness, warmth, swelling, or pain of the skin or at an injection site, which may indicate a local infection.
The road through leukemia treatment may be long, but every normal temperature reading, every meal you are able to eat, and every restful night's sleep can be a small milestone. We hope every patient can move steadily toward recovery and return to everyday life.