Always follow the advice of the patient's care team.
Medical Essentials for Caregivers
When to Call the Patient's Care Team
Page the patient's transplant physician (617-632-3352) if they experience:
Contact the care team right away if you notice the following signs or symptoms:
When in doubt, always call the patient's medical care team.
If the patient is having a medical emergency, immediately call 911. After emergency services have been notified, call the Dana-Farber page operator at 617-632-3352 and ask to have a member of the patient’s care team paged.
Page the patient's transplant physician (617-632-3352) if they experience:
- Temperature greater than 100.4°F
- Shortness of breath, chest pain
- Any problems with your Hickman catheter (pain, redness, swelling, difficulty flushing)
- Light-headedness or fainting
- Confusion
Contact the care team right away if you notice the following signs or symptoms:
- Bleeding from the gums, nose, rectum, or bladder, or increased bruising
- Symptoms of cough, nasal congestion, flu/cold-like symptoms
- Any change in level of nausea/vomiting, diarrhea, or the inability to eat, drink or take pills
- The patient is unable to take their medications for any reason, including if the pharmacy is unable to dispense the medication
- Any skin rashes or redness (check every day when the patient bathes)
- Any mouth sores or rectal tenderness
- Any genital sores, vaginal bleeding, discharge, or odor
- Any burning, pain, blood in urine, or change in frequency of urination
- Dizziness or headaches
- Yellowing of the skin or eyes
- Any new pain
When in doubt, always call the patient's medical care team.
If the patient is having a medical emergency, immediately call 911. After emergency services have been notified, call the Dana-Farber page operator at 617-632-3352 and ask to have a member of the patient’s care team paged.
Symptoms to Watch For
Nausea and Vomiting
Most patients will experience some nausea and vomiting after receiving chemotherapy. Often, anti-nausea medications will be prescribed to help lessen the severity of the nausea. Below are some other techniques that can also help lower the risk of nausea:
Diarrhea
Diarrhea is another symptom often associated with chemotherapy treatment.
Pain
Pain is a symptom that can occur for many reasons. ALWAYS notify the care team about any new pain or discomfort that the patient is having. The team will treat the pain according to type, severity, and location, and may order certain tests to find out the cause of the pain.
Fever
Fevers can be related to certain chemotherapy drugs, but can also be related to neutropenia (a decrease in infection-fighting white blood cells called “neutrophils”) or infections. After chemotherapy, the patient will become neutropenic and will have no immune system to protect them from infections. During this neutropenic phase, fevers are fairly common. It is essential to treat fevers quickly to avoid developing serious infections.
Neutropenia (Low White Blood Cell/Neutrophil Count)
High-dose chemotherapy will cause the patient to lose their white blood cells, which includes the infection-fighting neutrophils and is referred to as “neutropenia”. The patient will remain neutropenic for approximately two to three weeks.
Bleeding Related to Thrombocytopenia (Low Platelet Count)
Bleeding is often related to the low platelet count (thrombocytopenia) that occurs after high-dose chemotherapy. When platelets – the blood components that serve as the body’s bandages, allowing blood to clot – are low, the blood becomes thin and has a lowered ability to clot.
Platelet transfusions will be necessary when platelet counts fall below 10,000 to 20,000. During this time, the risk for bleeding is higher. Take the following steps to avoid bleeding:
Platelets take longer to recover than white blood cells so the patient may remain at a higher risk of bleeding even though they may no longer be neutropenic. Tell the care team immediately if you notice any blood in the patient’s stool or urine, or if the patient experiences a sudden, severe headache.
Fatigue
Fatigue is a symptom that can limit the patient’s ability to carry on usual activities. Fatigue has many contributing factors, including chemotherapy, malnutrition, insomnia, and anemia (low red blood cell count).
Mouth Pain and Mucositis
Certain chemotherapy agents can cause mucositis, an inflammation of the tissue in the mouth and esophagus that can be very painful.
Loss of Appetite
After a transplant, patients often experience a loss of appetite due to chemotherapy and nausea. Talk to the patient’s care team about a nutrition consult to help with these issues. Here are some additional tips:
Skin Rash
Alert the care team about any new skin rashes you notice on the patient so they can evaluate and recommend the best treatment strategies.
Pulmonary (Lung) Problems
Shortness of breath and coughing are the most common pulmonary symptoms transplant patients experience.
Nausea and Vomiting
Most patients will experience some nausea and vomiting after receiving chemotherapy. Often, anti-nausea medications will be prescribed to help lessen the severity of the nausea. Below are some other techniques that can also help lower the risk of nausea:
- If the patient is feeling nausea, avoid heavy foods or milk products.
- Try a clear liquid diet (clear soups or broths) at first until the patient is feeling better. Then move to a bland diet with foods that are easy to digest, including noodles, rice, toast, or eggs.
- The patient should avoid taking medications on an empty stomach, unless told specifically to do so by the care team.
- The patient can try to eat a small amount of food prior to taking medications to help prevent nausea associated with medications. Sometimes, taking an anti-nausea medication before taking other medications can help. It may also help to have the patient take medications 15-30 minutes apart.
- Certain smells can cause nausea, so avoid cooking strong-smelling foods near the patient.
- Let the care team know how the prescribed anti-nausea medication is working. Medications can often be changed or doses adjusted to provide better relief.
Diarrhea
Diarrhea is another symptom often associated with chemotherapy treatment.
- The patient’s care team will usually prescribe an anti-diarrhea medication after a stool sample has been sent to check for a bowel infection called clostridium difficile (C. Diff). If the patient is found to have clostridium difficile, they will be started on an oral antibiotic and told to avoid taking any anti-diarrhea medications so that the infection can be cleared from their intestinal system through bowel movements.
- If the patient has diarrhea that is not caused by clostridium difficile and the care team gives permission for them to take anti-diarrhea medications, use these only as instructed to avoid causing constipation.
- When having diarrhea, make sure the patient is drinking as much fluid as possible and at least 2 liters per day (preferably sports drinks) to avoid severe dehydration.
- Patients with diarrhea should avoid milk products and supplement drinks because they may further loosen the stool.
- Tell the care team how much diarrhea the patient has daily and how much fluid they are able to drink.
Pain
Pain is a symptom that can occur for many reasons. ALWAYS notify the care team about any new pain or discomfort that the patient is having. The team will treat the pain according to type, severity, and location, and may order certain tests to find out the cause of the pain.
- Opioids (narcotics) are often prescribed and are very effective in treating pain, but they also have side effects, including nausea, sleepiness, constipation, and slowed breathing.
- Make sure the patient takes pain medicine with food to avoid nausea.
- Pain medications should be used only as prescribed and as instructed by the care team. Taking pain medications more frequently or at higher doses than prescribed can lead to serious complications.
- If the patient expresses a feeling of needing more (or more frequent) pain medication, contact the care team right away and let them know. They can evaluate whether an adjustment to the pain medication is necessary.
- If the patient becomes too sleepy or has a severe reaction to the medication, stop the opioids and call the care team immediately.
- Understand that each patient will react to opioids differently based on past exposure to pain medications and other medications they may be taking.
- Let the care team know how well the pain medication is working.
Fever
Fevers can be related to certain chemotherapy drugs, but can also be related to neutropenia (a decrease in infection-fighting white blood cells called “neutrophils”) or infections. After chemotherapy, the patient will become neutropenic and will have no immune system to protect them from infections. During this neutropenic phase, fevers are fairly common. It is essential to treat fevers quickly to avoid developing serious infections.
- Tell the care team right away if the patient has a fever that is higher than 100.4° F, so that antibiotics can be started as soon as possible.
- The patient should not take (acetaminophen (Tylenol®) or NSAIDs such as Advil, Ibuprofen, Aleve unless instructed, because these medications can hide a fever that may be present. A fever is a warning sign of a possible infection.
Neutropenia (Low White Blood Cell/Neutrophil Count)
High-dose chemotherapy will cause the patient to lose their white blood cells, which includes the infection-fighting neutrophils and is referred to as “neutropenia”. The patient will remain neutropenic for approximately two to three weeks.
- When a patient has no white blood cells, they have no immune system to protect them from infection. They should avoid public places and sick people that may expose them to infection.
- Good handwashing is the most important thing that patients and caregivers can do to prevent infection.
- If the patient needs to visit the hospital/clinic, they should wear a surgical mask (which can be obtained at Dana-Farber or Brigham and Women’s) and gloves.
Bleeding Related to Thrombocytopenia (Low Platelet Count)
Bleeding is often related to the low platelet count (thrombocytopenia) that occurs after high-dose chemotherapy. When platelets – the blood components that serve as the body’s bandages, allowing blood to clot – are low, the blood becomes thin and has a lowered ability to clot.
Platelet transfusions will be necessary when platelet counts fall below 10,000 to 20,000. During this time, the risk for bleeding is higher. Take the following steps to avoid bleeding:
- Tell the patient to avoid blowing their nose very hard, shaving, and playing intense sports, intense exercise, or heavy lifting during this time.
- Patients should use only a soft-bristle toothbrush. They should not floss since it can cause bleeding of the gums.
- Patients should not use any rectal suppositories or over-the-counter medications that can cause bleeding, including aspirin, ibuprofen, and naproxen.
- Before resuming or engaging in sexual activity, the patient should speak with their physician.
Platelets take longer to recover than white blood cells so the patient may remain at a higher risk of bleeding even though they may no longer be neutropenic. Tell the care team immediately if you notice any blood in the patient’s stool or urine, or if the patient experiences a sudden, severe headache.
Fatigue
Fatigue is a symptom that can limit the patient’s ability to carry on usual activities. Fatigue has many contributing factors, including chemotherapy, malnutrition, insomnia, and anemia (low red blood cell count).
- Immediately after transplant, rest is the most important way to combat fatigue. Getting enough sleep and following a nutritious, healthy diet can add to the overall well-being of the patient and can help lessen the fatigue.
- Inform the care team if insomnia is a problem, so that sleeping aids can be recommended or prescribed.
- Blood transfusions can provide a short-term energy boost if the patient’s hemoglobin (the protein in the blood cells that carries oxygen through the body) is below a certain range.
- Exercising after transplant is recommended to build up strength and boost energy levels. The patient should start with light exercise, adding more according to how much they can tolerate.
- Energy levels generally improve with time, but sometimes can take up to 3-6 months to fully recover. Everyone recovers at a different pace. Do not be discouraged if recovery takes longer than expected.
Mouth Pain and Mucositis
Certain chemotherapy agents can cause mucositis, an inflammation of the tissue in the mouth and esophagus that can be very painful.
- Good oral hygiene and rinsing the mouth with oral solutions, as prescribed by the care team, will help with the pain and prevent infection.
- Tell the care team as soon as the patient first experiences a sore throat or mouth pain so that pain medication can be started.
- Sometimes, the pain can become severe enough that the patient is unable to swallow fluids or medications. During this time, intravenous opioids and fluids are often needed to control the pain and make sure the patient is getting enough fluids.
- Pain medications only help relieve the pain; they do not cure the mucositis. Fortunately, mucositis is temporary and typically resolves when the patient’s white blood cell count recovers.
Loss of Appetite
After a transplant, patients often experience a loss of appetite due to chemotherapy and nausea. Talk to the patient’s care team about a nutrition consult to help with these issues. Here are some additional tips:
- Prepare small meals and encourage the patient to eat frequent, small snacks throughout the day.
- High-protein diets are recommended to help keep the patient nourished.
- Drinking supplement nutritional drinks (for example, Boost® or Ensure®) once or twice a day can provide necessary calories and nutritional boosts.
- Appetite stimulants can be prescribed but usually are reserved for patients whose poor appetite is a problem for an extended period of time or who lose large amounts of weight.
Skin Rash
Alert the care team about any new skin rashes you notice on the patient so they can evaluate and recommend the best treatment strategies.
- Whether you are bathing the patient or they are bathing themselves, it’s important to avoid any new lotions, soaps, or bath gels.
- Avoid new laundry detergents, as they might cause allergic rashes.
- Use only medications prescribed by the care team for the patient. Over-the-counter creams or lotions can make many skin rashes worse.
- Tell the care team if the patient is experiencing itching. Medications can be prescribed to relieve an irritating itch.
Pulmonary (Lung) Problems
Shortness of breath and coughing are the most common pulmonary symptoms transplant patients experience.
- Shortness of breath and cough can be related to many different things after chemotherapy, including fluid in the lungs, inflammation of the lung tissue, and infections.
- Notify the care team immediately if any of these symptoms occur so they can prescribe appropriate treatment.
- The patient may need a chest x-ray to examine the lungs if shortness of breath or coughing continues.
GVHD: A Serious Concern for Allogeneic Transplant Patients
One of the most common complications patients face after an allogeneic transplant is graft-versus-host disease (GVHD). GVHD is caused by a reaction of the donor’s immune system to the patient’s immune system. It may occur early (this is known as acute GVHD) or later (called chronic GVHD) after the transplant.
Acute GVHD can affect the skin, gastrointestinal tract, and liver. Chronic GVHD affects the same systems as acute GVHD, but may also affect the eyes, mouth, lungs, joints, and vagina. The symptoms of GVHD may be mild or severe. Medications are used to treat and manage GVHD. The treatment process for GVHD is long and recovery is slow.
If the patient experiences any of these symptoms of GVHD, call your care team right away:
One of the most common complications patients face after an allogeneic transplant is graft-versus-host disease (GVHD). GVHD is caused by a reaction of the donor’s immune system to the patient’s immune system. It may occur early (this is known as acute GVHD) or later (called chronic GVHD) after the transplant.
Acute GVHD can affect the skin, gastrointestinal tract, and liver. Chronic GVHD affects the same systems as acute GVHD, but may also affect the eyes, mouth, lungs, joints, and vagina. The symptoms of GVHD may be mild or severe. Medications are used to treat and manage GVHD. The treatment process for GVHD is long and recovery is slow.
If the patient experiences any of these symptoms of GVHD, call your care team right away:
- Rash or thickening/tightening of the skin
- Difficulty swallowing, heartburn, vomiting, or excessive diarrhea
- Dryness, pain, sores, or burning mouth
- Burning in eyes, blurring, sensitivity to light (photophobia), or “gritty feeling”
- Changes in color, consistency, or frequency of bowel movements
- Yellowing of the skin or eyes