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Caregivers' Guide for Bone Marrow/Stem Cell Transplant

Symptom Management for Caregivers: An Oncology Nurse's Perspective

by Maria Thompson

A large part of the caregiver role is often associated with symptom management. After chemotherapy and bone marrow/stem cell transplant, your loved one may experience a wide variety of side effects and symptoms secondary to their treatment. The purpose of reviewing a variety of different symptoms is to equip caregivers with the knowledge of possible situations and encourage successful problem- solving. As intimidating as this chapter might seem, it was written so that caregivers understand that each patient will experience transplant in a very unique way, and the medical team will support caregivers in any event that may occur.

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. However, there are some other techniques that can aid in decreasing the risk of nausea. If the patient is nauseous, have them avoid heavy foods or milk products. Try a clear liquid diet at first until the patient is feeling better, then advance to a bland diet with easy to digest foods, including noodles, rice, clear soups, toast, or eggs. Try to avoid taking medications on an empty stomach unless instructed specifically to do so. It is often helpful to eat a small amount of food prior to taking pills to help prevent nausea associated with medications. Sometimes, taking an anti-nausea pill prior to taking other oral medications can help prevent nausea and keep the oral medications down. It may also be helpful to have the patient take oral medications 15-30 minutes apart. Certain smells can induce nausea, so avoid cooking strong smelling foods near the patient. Give the patient his anti-nausea medications as prescribed by your institution because every person responds differently. Let your medical professional know how the prescribed anti-nausea medication is working. Often medications can be changed or doses adjusted to provide better relief.

Diarrhea
Diarrhea is another symptom that is often associated with chemotherapy regimens. Your health care providers will usually prescribe an anti-diarrhea medication after a stool sample has been sent to check for a bowel infection called Clostridium Difficile. If the patient is found to have Clostridium Difficile, he will be started on an oral antibiotic and advised to avoid anti-diarrhea medications so that the infection can be cleared from his intestinal system through bowel movements. Use the anti-diarrhea medications only as instructed because these medications can cause constipation if used incorrectly. It is important to have your loved one drink as much fluid as possible (preferably fluids like sports drinks or fruit juices) when he has diarrhea to avoid severe dehydration. It is recommended that patients avoid milk products and supplement drinks because they may further loosen the stool due to lactose intolerance. It is recommended that you keep your medical professional updated on how much diarrhea the patient has daily and how much fluid he is able to consume. This information, the intake and output, is very important in helping your medical staff treat the patient.

Pain
Pain is a symptom that can occur for many reasons. ALWAYS notify your medical professional about any pain that the patient may be experiencing, no matter how minor. Your health care provider will then treat the pain according to type, severity, and location and may order certain tests to find out the cause of the pain. Narcotics are often prescribed and are very effective in treating pain, but they also have side effects, including nausea, lethargy (sleepiness), constipation, and slowed breathing. Take narcotics with food to avoid the nausea associated with taking pills on an empty stomach. It is recommended that pain medications be used only as instructed by your medical professional. Taking pain medications more frequently or at higher doses than prescribed can lead to sleepiness and slowed breathing. If the patient becomes too sleepy or has a severe reaction to the medication, stop the narcotics and call your medical professional immediately! Understand that each patient will react to narcotics differently based on past exposure to pain medications and other medications that the patient may be taking at that time. Let your medical professional know how the pain medication is working. There are often changes in the medication or dose that can be made to improve pain relief and decrease side effects.

Fevers
Fevers can be related to certain chemotherapy agents but are most often related to neutropenia (decrease in white blood cells) or infections. After chemotherapy, the patient will become neutropenic and will have no immune system to protect him or her from infections. During this neutropenic phase, fevers are fairly common. It is essential to treat fevers quickly to avoid the possibility of developing serious infections. Notify the medical provider of any fever >101.0 degrees Fahrenheit so that intravenous antibiotics can be started as soon as possible. The patient should use Tylenol only when instructed because taking Tylenol can hide a fever that may be present. A fever is a sign to your medical provider of a possible infection.

Neutropenia (Low White Blood Cell Count)
High-dose chemotherapy will cause the patient to lose his white blood cells (neutropenia). The patient will remain neutropenic for approximately 2-3 weeks. When a patient has no white blood cells, he has no immune system to protect him from infection. When the patient is neutropenic, avoid public places and sick people that may expose the patient to infection. If the patient has to visit the hospital for any reason, have him wear a TB or surgical mask that can be obtained from your medical institution. It is recommended to avoid all fresh fruits, vegetables, or any uncooked foods that can expose the patient to bacteria and fungal organisms. Good hand washing is the most important thing that patients and caregivers can do to prevent infection. When neutropenic, the patient should have minimal contact with small children. Children often transmit viral infections that they contract from other children in schools or day care facilities. However, the emotional benefit of maintaining these contacts must be considered. With adequate precautions such as avoiding children that are ill and all parties practicing good handwashing, the benefits may well outweigh the risks.

Bleeding related to Thrombocytopenia
Bleeding is related to the low platelet count (thrombocytopenia) that occurs after high dose chemotherapy. When platelets are low, the blood becomes thin and has a decreased ability to clot. Platelet transfusions will be necessary when platelet counts fall below 10,000-20,000, depending on your hospital's guidelines. During this time, the risk for bleeding is higher and certain measures can be taken to avoid bleeding. Instruct the patient to avoid vigorous nose blowing, shaving, and not to participate in any vigorous sports, strenuous exercise, or heavy lifting during this time. Soft bristle toothbrushes are necessary, and patients should not use dental floss to avoid gingival bleeding. Do not use any rectal suppositories, and avoid using any over-the-counter medications that can cause bleeding, including aspirin, ibuprofen or naproxen. Before beginning sexual activity, consult with a member of your transplant team. Platelets will recover a few days after the patient's white blood count recovers. Notify your health care professional immediately if you notice any bleeding in the stool or the urine or should the patient experience a sudden onset of a severe, debilitating headache.

Fatigue
Fatigue is an often debilitating symptom that has many contributing factors, including chemotherapy, malnutrition, insomnia and anemia (low red blood cell count). Immediately after transplant, REST is the most important component in combating fatigue. Appropriate sleep and eating patterns can add to the overall well-being of the patient and can help lessen the fatigue. Inform health care providers if insomnia is a problem so that sleeping aids can be prescribed. Blood transfusions can provide a short-term energy boost if the patient's hemoglobin is low. Exercising post-transplant is recommended to strengthen muscle and boost energy levels once the patient has returned home. Always begin with light exercise, advancing as the patient tolerates. 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 the patient 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 mouth rinses with oral solutions as prescribed by the health care provider will help with the pain and prevent infection. Let your health care provider know when 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 narcotics and fluids are often needed to control the pain and to keep the patient hydrated. Pain medications only help alleviate the pain, not cure the mucositis. Fortunately, mucositis is temporary and typically resolves when the patient's white blood cell count recovers.

Anorexia or Loss of Appetite
Patients, post-transplant, will often experience a loss of appetite due to chemotherapy and nausea. During this time, prepare small meals and encourage the patient to eat frequent, small snacks throughout the day. Appetite stimulants can be prescribed but usually are reserved for patients who lose large amounts of weight. Diets high in protein are recommended to help keep the patient nourished despite poor oral intake. Supplement drinks once or twice a day can provide caloric and nutritional boosts essential for malnourished patients.

Skin Rash
Skin rashes, post-transplant, are usually associated with a reaction to a medication or to viral and fungal infections. Your medical professional should be alerted to any new skin rashes and should evaluate the rash daily to determine type and effectiveness of treatment strategies. As a caregiver, it is essential to help keep the patient bathed, avoiding any new lotions, soaps or laundry detergents that can contain ingredients that can lead to allergic rashes. Use only medications prescribed by your medical professional because over the counter creams or lotions can exacerbate many skin rashes. Let your medical professional know if itching occurs because medications can be prescribed to alleviate an irritating itch.

Pulmonary Symptoms
Shortness of breath and cough are the most common pulmonary symptoms that occur during bone marrow transplant. Shortness of breath and cough can be related to many different things after chemotherapy including fluid overload, lung abnormalities and infection. Notify your health care professional immediately if these symptoms occur so that appropriate medications can be given. A chest x-ray will often be performed to examine the lungs if shortness of breath or cough persists.

Graft Versus Host Disease (GVHD)
Graft versus host disease is a condition that is experienced by allogeneic (stem cells from a donor other than the patient) stem cell recipients only. Graft versus host disease is a reaction of the donor cells to the patient. Acute GVHD can affect the skin, the gut, and/or the liver. GVHD of the skin presents as a redden skin rash over 25-50% of the body that is often very itchy. GVHD of the gut presents as sudden onset of severe nausea, vomiting and large amounts of diarrhea. The nausea and vomiting usually do not respond to typical anti-nausea medications. The diarrhea is often very watery, dark in color and is associated with abdominal cramping. Sometimes the diarrhea and vomiting prevent adequate nutritional intake, making it necessary to start intravenous nutritional support. GVHD of the liver occurs with elevated liver enzymes, which can lead to jaundice (yellow tinge to the skin and eyes), itching, fluid retention in the abdomen, and right abdominal pain. If any of these symptoms occur, notify your medical provider immediately so that treatment can be initiated quickly. Delay in treatment can worsen the GVHD and its symptoms, making it more difficult to control.

Safety Issues
Patient safety, after transplant, is a very important caregiver task. Hand washing is an essential step in preventing the spread of infection to the patient.

There are other safety concerns that need to be considered in post-transplant patients. These include any respiratory difficulties, chest pain or neurological changes (confusion, severe headaches, sleepiness or black-outs). Notify your health care provider of any unusual symptoms or changes in the patient, no matter how trivial. Rapid notification leads to a quicker response, often saving the patient from dangerous situations. Safety of the patient is of the utmost importance. If safety is maintained, it can increase the chances of a successful transplant course.

Post-Transplant Expectations
Once a patient has successfully engrafted (recovered his white blood cell counts) after transplant, it is usually time for him to return home. The caregiver and the patient will realize that though they have returned home, they will still need assistance for a few weeks after transplant. Profound fatigue can often linger for many weeks after transplant and generalized fatigue can remain for up to 5-6 months after transplant. A daily exercise regimen and appropriate nutritional intake is essential in optimizing the patient's recovery once he has returned home. Exercise should be increased gradually and only as the patient tolerates. Post-transplant complications may sometimes occur after the patient has left the hospital. Therefore, it is very important that the patient notify his local physician and his bone marrow transplant team immediately, if any changes or problems should occur.

Upon discharge, the patient will be scheduled for follow-up visits with the bone marrow transplant team. Each institution will have different post-transplant schedules that will be individualized to the patient's specific needs. It is essential that the patient keeps these appointments and has a caregiver present during these visits in case the patient needs assistance getting to specific tests or when recovering from certain procedures (bone marrow biopsy, catheter removal, etc.).

Psychological stress is another common factor for the caregiver. The demands placed on caregivers may be overwhelming at times. The medical team will be a great resource for you to discuss any concerns and questions you may have. There will be a social worker, psychologist or other mental health care professional to help you or the patient cope with issues that arise during the transplant process. Rely on them for support and to validate your caregiver role. Caregivers really are partners-in-care along with the transplant team and are an essential part of the overall transplant experience. Many find it helpful to talk with previous caregivers who may be able to provide first-hand knowledge and helpful tips during this difficult period.

Maria Thompson, ARNP-c, is an Advanced Registered Nurse Practitioner Certified. She worked at Duke University Medical Center BMT Program for six years and currently works at the Cleveland Clinic Florida, Hematology/Oncology Department. She spends most of her free time chasing after her twins.

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Table of Contents

Acknowledgements

Foreword

Why a Special Booklet for Caregivers?

My Gift to Mom for Her Second Birthday: An Adult Daughter's Perspective

Tackling the Challenge: A Husband's Perspective

Cancer Etiquette: A Survivor's Perspective on Effective Communication

Top Tips for Parent Caregivers: A Mother's Perspective

Another Way to Say I Love You: A Wife's Perspective

Emotional Aspects of Caregiving: An Oncology Social Worker's Perspective

Relying on a Family of Strangers: A Patient's Perspective

Symptom Management for Caregivers: An Oncology Nurse's Perspective

How to Be a Successful Family Caregiver: An Advocate's Perspective

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