Post stem cell transplant
Engraftment: Waiting for the Stem Cells to Grow
It will take weeks to know whether the stem cells are accepted by your child's body. After infusion of the stem cells, the cells find their way to the marrow spaces where they begin to divide and produce mature red blood cells, white blood cells, and platelets. This often takes about two to four weeks to occur. One of the first signs that this has happened is the appearance of new white blood cells in the peripheral blood circulation. This is checked with your child's blood counts every day. Engraftment occurs when the absolute neutrophil count is greater than 500 for three consecutive days. This waiting period is an anxious time for you and your child. It is possible, but unlikely, that the stem cells do not engraft. If this happens, we will discuss other treatments with you and your child.
Because your child's white blood cell count is low, his/her body's defense against infections are weak. Organisms which do not cause infections in people with healthy defenses may cause life-threatening infections in people without white cells or other mechanisms of normal immunity. During the first weeks after the transplant, your child is at high risk for bacterial, fungal and viral infections. One of the most common signs of infection is fever. Most transplant patients have a fever while waiting to engraft. Other common signs of infection may not be displayed in your child due to the low white blood cells. White blood cells are needed to display common signs of infection such as redness or pus. A fever in a transplant patient is very serious and often the only sign of infection. With the first sign of fever, IV antibiotics will be administered to your child. Blood cultures will also be drawn from your child's central venous catheter to determine the cause of the fever. If your child has a fever, blood cultures will be done every day to detect if there is a specific bacteria causing the fever. Infections may develop very suddenly and be very severe. It is possible that your child will need close monitoring in the intensive care unit during the acute phase of the infection period.
Antibiotics will be continued until your child completes a full course of therapy for any bacteria he/she may have, no longer has a fever, when engraftment occurs and when the doctors are satisfied that he/she has no infection. If your child has persistent fever, he/she may receive an anti-fungal and/or antiviral medicine.
Transplant patients can have unusual infections because of their lowered immunity. Some viruses that cause the common cold may cause bladder infections resulting in painful urination and blood in the urine. Patients may also develop pneumonia. This can be caused by a variety of organisms including cytomegalovirus (CMV), Pneumocystis carinii (PCP), and Legionella. All of these pneumonias give the same X-ray picture but respond to different medicines. A lung biopsy and/or bronchoscopy (looking down the windpipe and taking samples) may be needed to determine the cause. It is important to know the type of pneumonia so that the correct medicines can be given.
Blood tests and x-rays
After your child receives the transplant, daily blood tests will be taken. If possible, the blood tests are drawn through the central line. Only needed venipunctures (sticks) will be done. If your child has a port-a-cath, the site must be accessed so that cultures can be drawn from it with every fever.
Almost all transplant patients require blood product transfusions while waiting for engraftment to occur. Packed red blood cells and platelet transfusions are given frequently. Typically your child’s hemoglobin is 8.0 or less, your child will receive most likely receive a packed red blood cell transfusion. Your child's platelet count will most likely also be low during this period. This means he/she is more prone to bleed from a cut or may bruise from a bump. When your child's platelet count is 20,000 or less, he/she may receive a platelet transfusion. Some patients need frequent platelet transfusions. Your child will receive Tylenol, Benadryl and hydrocortisone before the transfusion to prevent your child from having an allergic reaction to the red blood cells or platelets.
Mucositis / pain management
The chemotherapy and radiation therapy often cause some degree of soreness or ulcers in his/her mouth and throat. This side effect may range from mild irritation to severe pain causing difficulty in swallowing. There is currently no prevention for this side effect. However, good mouth care helps to prevent other complications. Upon admission to the SCT unit, your child will begin a mouth care regimen that is very important. Mouth care should be done through the transplant process and continue after discharge. Your child should brush his/her teeth at least twice a day with a soft bristle toothbrush (one will be provided for you) and swish his/her mouth with chlorhexidine mouthwash and hematology/oncology mouthwash several times a day.
If your child begins to develop pain, an analgesic (pain medicine) such as morphine, will be given to decrease the pain. The pain medicine is usually given through a patient controlled analgesic (PCA) pump. This pump allows a continuous dose of the pain medicine to infuse and also allows the patient to receive additional doses of medicine if needed by simply pushing a button. The pump is programmed so that only a preset amount of medicine can be given to your child. Your child will not become addicted to the pain medicine because it is being used to control pain. Some parents are opposed to a PCA pump due to concern for drug abuse. In fact, good pain control is essential to recovery and drug abuse is not a problem. If your child has severe mouth pain, he/she may not want to do with mouth care because of the soreness. Numbing medicine that is applied on his/her gums or cheeks with a cotton tip applicator may also be given to your child. The mouth and throat sores and pain will heal quickly after your child engrafts.
If your child has received an allogeneic transplant, then he/she could develop graft-versus-host disease (GVHD). This side effect occurs in about 50% of the patients. The appearance of GVHD may coincide with the new stem cells engrafting and start to produce new white blood cells. GVHD is not caused by the stem cells, but by “passenger” lymphocytes that are infused with the stem cells. The lymphocytes may react to the tissues of their new host because the host tissues are seen as “foreign” so the donor lymphocytes “attack” the host in response. Patient organs that experience this initial attack, or GVHD, are usually on large surface organs of the patient such as the skin, liver and gut. One or all of these organs may be involved. Common signs of GVHD include skin rash, often starting on the palms of the hands or soles of the feet, diarrhea, jaundice (a yellow skin color) and abnormal liver function tests. Members of the SCT team are constantly watching your child for any of these signs. Medicines are given to prevent GVHD and other medicines may be added to control these symptoms if they occur.
Usually GVHD is mild but it can be severe. Severe GVHD requires aggressive treatment. If uncontrolled, GVHD can be fatal. We will treat your child with different medicines that will reduce the GVHD risk until new stem cells grow normally in your child.
Types and Manifestations of GVHD
GVHD can take two forms, acute and chronic.
- Acute GVHD usually occurs during the first three months after transplant. A person may develop acute GVHD that goes away when treated or the acute GVHD may become chronic GVHD.
- Chronic GVHD usually develops three to 18 months after the transplant and can occur even if your child did not have acute GVHD.
Patients who get acute GVHD have a 50 percent chance of developing chronic GVHD. Chronic GVHD often affect the:
- Eyes- causing conjunctivitis, dryness and irritation, itching
- Skin- causing rash and itching
- Liver- causing jaundice and/or hepatitis
- Stomach and intestinal tract- resulting in loss of appetite, cramping pain, diarrhea, dry mouth and vomiting
Sometimes other organs of the body, including the lungs and kidneys, also are affected. A biopsy of the affected organ is often needed to confirm the diagnosis.
Prevention and Treatment
There are several medicines that are used to help prevent, treat and reduce the severity of GVHD. Some of the medicines used include Cyclosporine or Tacrolimus, prednisone, and Methotrexate. Cyclosporine or Tacrolimus, is started two days before the transplant and continued for several months after transplant. These medicines may be given alone or in combination depending upon the type of transplant and the disease being treated by the transplant. The medicine levels of cyclosporine or tacrolimus are checked frequently to assist in maintaining safe and therapeutic doses.
If your child has received an allogeneic transplant, he/she will continue to follow a SCT diet as previously explained in the ‘Diet’ section of this handbook until engraftment. Your doctor, nurse practitioner, or dietitian will inform you when it is safe to introduce fresh foods and restaurant food back into your child’s diet. The dietitian will be available to answer your questions regarding your child's diet. Due to nausea, vomiting or mouth sores during the transplant, many children are unable eat and drink enough for adequate nutrition. Your child’s oral intake will be closely monitored. If your child is no longer able to eat and drink enough, total parental nutrition (TPN) will be given to your child through his/her central line. TPN will provide your child with calories, vitamins, protein and essential minerals usually obtained through food. When your child begins to show interest in foods again, the TPN will begin to be tapered off. When your child is eating and drinking enough for good nutrition, the TPN will be stopped. Good nutrition is defined through calorie counts obtained from a daily food intake diary. Some patients may be discharged from the hospital while still receiving TPN. Parents will be taught how to give the TPN at home. What is the Stem Cell Transplant Diet?
It is important for your child to continue to do some form of exercise every day. Even sitting up in the chair or taking a short walk in the hall will prevent your child from developing other complications. A physical therapist will evaluate your child upon admission to the transplant unit and will assist in developing an exercise plan for your child.
If there are no problems identified at the time of the initial evaluation, the therapists will re-evaluate your child one to two weeks after his/her transplant to assess any change in your child's condition. A treatment program will be established at that point if a need for physical or occupational therapy is identified.