Welcome & Overview
We would like to welcome you to the Adult Stem Cell Transplant program at Memorial Sloan Kettering (MSK). We understand that you and your friends and family may feel overwhelmed, and we want you to know that we’re here to help you throughout this process.
This guide is designed to help you and those who care for you understand what to expect throughout your transplant journey. The information in this guide is not meant to replace the information that your transplant team will teach you, but it will be a resource for you to refer to throughout the process. In this guide we will explain some of the challenges that you might have over the course of your transplant and recovery, but it doesn’t mean you’ll have all of them. Because of that, you shouldn’t compare yourself to other people you may know or have heard of that had a stem cell transplant. Each person is unique.
Autologous stem cell transplants have been done for many decades. Advances in research have resulted in significant improvements over that time. However, it is still a complex procedure that requires a commitment from your transplant team, but just as importantly, on the part of you and those who care for you.
Autologous transplants can be done safely in the hospital, however for some people, transplants can also be done outpatient. Outpatient transplants have been shown to be feasible and safe, while improving the satisfaction and experience of people having transplant. An outpatient transplant is not right for everyone, however. Your doctor will talk with you about whether an outpatient transplant might be an option for you. You will read about both in this guide.
Preparing for your transplant is the first part of your journey. If you have an inpatient transplant, you will be in the hospital 24 hours a day before, during, and for some time right after your transplant. If you have an outpatient transplant, you and your caregiver(s) will stay at an apartment near the hospital approved by your doctor or at a furnished apartment at the NY Presbyterian Guest Facility at the Helmsley Medical Tower.
Having a transplant is a long process. At MSK we have a large, integrated healthcare team that will care for you as you go through each phase. We understand that you may have many emotional changes during the transplant process. Your transplant team includes many providers, including social workers, chaplains, psychiatrists, and members of our Integrative Medicine Service. All of these healthcare providers are available to support and help you and your caregiver(s) cope with what you may feel.
During your transplant journey, it’s very important that you communicate clearly with your transplant team and your caregiver about how you’re feeling. If anything is bothering you, even if it seems minor, tell a member of your transplant team. Whether it’s physical or emotional, it’s very important not to let things build up, otherwise minor issues can become more of a problem. The more information you communicate to your transplant team, the more they can help you. There is usually something that they can do to make you feel more comfortable.
Below are some of the ways you can communicate with your transplant team:
If it’s between 9:00 am and 5:00 pm, call your doctor’s office. If it’s after 5:00 pm, call 212-639-2000 and ask for the doctor covering bone marrow transplant. If you’re having an outpatient transplant and it’s between 9:00 am and 7:00 pm, call the Outpatient BMT Clinic at 212-639-3122. If you’re having an outpatient transplant and it’s after 7:00 pm call 212-639-2000 and ask for the doctor covering bone marrow transplant.If you’re inpatient, talk with any member of your inpatient healthcare team or ask to speak with the Charge Nurse, Clinical Nurse Specialist, or Nurse Leader. While you’re inpatient it’s important to talk with your inpatient team, not call the outpatient office. Also, you should choose 1 caregiver to call the nursing station for updates, then that person can relay the information to the rest of your friends and family.We also encourage you to use our patient portal, MyMSK. You can use MyMSK to check your appointment schedule, request a prescription refill, contact a healthcare provider, and find educational information. MyMSK should never be used to communicate any symptoms to your healthcare team. Instructions about how to enroll in MyMSK are printed on the bottom of your appointment print out, or you can find them on our website at mymskcc.org. There is also a mobile app, MobileMyMSK, which you can download to your smart phone.
There is a lot of information in this guide to read and understand. Read the entire guide at least once, including the additional resources included in the back of the guide. You may find it easier to read a few sections at a time, rather than trying to read the entire guide at one time. We encourage you to refer to this guide as your treatment progresses.
We recommend that you highlight or write notes as you go through this guide on anything that you don’t understand or have a question about. There is no such thing as a silly question, so please ask about anything that is on your mind.
We’ve done our best to limit the number of medical terms in this guide. However, there are some words that you will need to understand. With this in mind, we’ve included a glossary of useful terms at the back of this guide.
What is bone marrow?
Your bone marrow is in the spaces in the center of the larger bones in your body — your hip, breastbone, and pelvis. It’s where blood cells are made. All blood cells originate from stem cells.
Blood supplies your body with the nutrients and other substances your body needs. Blood also has different types of cells with important functions. Blood cells belong to 1 of 3 major categories: white blood cells, red blood cells, and platelets.
- White blood cells help fight infections. They make up your immune system
- Red blood cells carry oxygen throughout your body.
- Platelets make clots to help stop bleeding.
What are stem cells?
Stem cells are baby (immature) cells that can become any kind of blood cell. Stem cells divide constantly to become different types of blood cells in your blood, replacing older blood cells. A very small number of stem cells circulate in your blood. Stem cells can be collected during a process called apheresis (A-fer-E-sis).
An autologous stem cell transplant has been recommended for you because your doctor feels it’s the best way to treat your specific disease. Autologous means “from yourself.”
In an autologous transplant, your stem cells will be collected (harvested) from you, and then frozen. You will then receive high doses of chemotherapy or a combination of chemotherapy and radiation. The high-dose treatment kills cancer cells, but also eliminates the blood-producing stem cells that are left in the bone marrow. Afterward, the stem cells that were collected are given (transplanted) back to you. This allows your bone marrow to make new blood cells.
Currently, most transplants are done an inpatient; however, some are done an outpatient. Your doctor will determine if you are a candidate and discuss your options with you.Back to top
Preparing for Your Transplant
During your first visit, you’ll meet with your doctor and other members of your transplant team. Your doctor will take a complete medical and surgical history, do a physical exam, and discuss what he or she thinks is the best treatment plan for you. This plan may also be discussed with other transplant doctors to ensure that there is agreement on what the best plan is for your specific situation. Your doctor also might discuss inpatient and outpatient transplants options.
Getting ready for your visit
During this time, you’ll make practical, physical, and emotional preparations for your transplant. Here is a list of things that will happen and things that you may need to do to get ready:
- Learn about your transplant — The information your transplant team will go over with you is meant to inform you, not frighten you. Make a note of anything that you don’t understand about your transplant, anything in this guide that isn’t clear, and any other questions you have.
- Contact your insurance company — It’s a good idea to contact your insurance company before your transplant and see if there is a dedicated case manager for you.
- Participate in a virtual program — We encourage you and your caregiver(s) to participate in an online educational program for people preparing for autologous stem cell transplants. Ask your clinical nurse coordinator for details, or go to: org/vp
- Choose a caregiver — Identify a family member or friend to act as your caregiver. Make sure this person understands what the role entails. You can also identify multiple people who will act as your caregivers throughout the transplant process. Give your caregiver a copy of this guide and ask him or her to read it at least once. While undergoing an inpatient transplant it is equally as important, if not more so, for your caregiver to be with you upon discharge from the hospital than while you are inpatient. If you’re having an outpatient transplant you will require a caregiver to remain with you whenever you are not in our outpatient BMT clinic.
- Fill out a Health Care Proxy form — A health care proxy is a legal document that identifies the person who will speak for you if you are unable to communicate for yourself. This person is known as your health care agent. This person may be different from your caregiver. You can get more information about this from your social worker or any other member of your transplant team.
- Meet with a social worker — Your social worker will explain the psychological, emotional, and financial support services offered by the social work team.
- Arrange for disability/leave of absence from work — If you are working, make arrangements to go on disability or take a leave of absence. You should expect to be away from work for about 6 months, though this can vary depending on your transplant course.
- Make decisions about your fertility — If fertility (the ability to have children naturally) is a concern for you, speak with your transplant team about your options. Ask for an appointment with a fertility specialist to discuss how your treatment may affect your ability to have children in the future and the steps you may be able to take to preserve your fertility. We have also included the following resources at the back of this guide:
- Cancer and Fertility: Information for Men
- Fertility Preservation: Options for Women Who Are Starting Cancer Treatment
- Selected Fertility Centers
- If necessary, arrange for childcare and pet care — If you have concerns about talking with your children about your transplant, your social worker can help guide you.
- Make decisions about your hair — Think about whether you’d like to cut your hair before you start receiving chemotherapy. Visit a wig store if you decide to wear a wig as soon as you can, that way you can find one that closely matches your natural hair, if you prefer.
- Have your pretransplant evaluation — You’ll undergo a series of medical tests. Your clinical nurse coordinator will review which tests are needed and your physician’s office assistant (POA) will work with you to schedule these tests at a time that is convenient for you (as best as possible).
- Meet with a dietitian — Your dietitian will review special dietary requirements and safe food handling.
- Meet with a pharmacist — Your pharmacist will go over all the medications you will be taking before and after your transplant.
A team of healthcare providers will care for you throughout your treatment. You will meet many as you progress through your transplant journey. You might not meet some members, such as your doctor’s office assistant, laboratory staff, or our service coordinator, but know that they are all working to help you. Below is a list of your team members and their roles.
- An attending doctor will be in charge of your care throughout your treatment. Although 1 specific doctor will be your primary outpatient doctor, different doctors may care you for while you are in the hospital.
- A fellow is a doctor who has completed general training and is receiving additional training in cancer care.
- A nurse practitioner (NP) is a nurse who has a master’s or doctoral degree. An NP is licensed to examine you, provide medical treatments, and prescribe medications.
- A physician assistant (PA) is a medical professional who has graduated from an accredited PA educational program and is nationally certified and licensed by the state to practice medicine under physician supervision. PAs are licensed to examine you, provide medical treatments, and prescribe medications.
- A BMT clinical nurse coordinator is a nurse who will communicate and work with you, your caregiver, and your team of doctors to organize and schedule all the testing, procedures, and consultations with other professionals needed before your transplant. Your clinical nurse coordinator will educate you about your specific treatment plan.
- Nurses will be working with you when you are seen at outpatient visits, as well if you are hospitalized. They are registered nurses specially trained in the care of people having stem cell transplants. Each outpatient nurse works with attending doctors and will meet you at the time of your initial consultation visit. Your outpatient nurse will see you at many of your outpatient visits after discharge and will follow you along your transplant journey. During your transplant, either inpatient or outpatient, you will have a team of primary nurses that will care for you. The nurses work 12-hour shifts and try to maintain consistency with who will be working with you. Both the inpatient and outpatient nurses work closely with your healthcare team to manage any symptoms and can help you with any questions or concerns you may have.
- A nursing assistant/patient care technician provides basic care and support under the direction and supervision of a registered nurse.
- A hospitalist is a doctor who sees people only while they are in the hospital. At MSK, there is a hospitalist on duty all night.
- A clinical pharmacist who specializes in the care of people having stem cell transplants will review your medications with you and your caregiver, teach you how to take them properly, and inform you of any side effects they may cause.
- A social worker will help you, your family, and your friends manage the stress that comes with the transplant process. Social workers understand the issues faced by people having transplants and are available to listen, offer counseling, and refer you or your family members to other resources and services, as needed.
- A transplant service coordinator will work with you and your insurance company to determine your transplant benefits. This person is experienced in the insurance issues faced by people having transplants. Each insurance company has its own policies and requirements. When your insurance company requires authorization, your transplant service coordinator will assist with that process.
- Physician office assistants provide administrative support to your attending doctors and their nurses. You may speak with them when you submit information, are scheduling an appointment, or have questions for your healthcare team.
- Session assistants work in the outpatient areas and monitor the flow of people in and out of the clinic. They help schedule required tests, scans, and treatments ordered by the medical team orders either completed or scheduled. Session assistants also manage everyone’s’ medical records and coordinate their future appointments.
- Research study assistants (RSA) work with your healthcare team and will speak with you and explain some of the research studies available to you at MSK. These studies mostly concern collecting sample and data.
- Patient representatives are liaisons between patients and their caregivers and the hospital staff. They are here to protect your rights and help explain hospital policies and procedures. Patient representatives can help you with any concerns about your care and help you communicate with members of your healthcare team.
- A dietitian is a food and nutrition expert who will assess your nutritional status, manage your treatment-related side effects, and provide dietary consultation to you and your caregiver.
- A physical therapist (PT) will work with you to help you maintain your strength and energy during your recovery.
- A room service associate will orient you to room service. They will make sure that you receive your menu and deliver your meals.
- A case manager will help arrange transfer to home or another facility, if needed.
Your caregiver will be an important part of your care during your transplant.
The role of your caregiver
Everyone having a transplant will benefit from having support from a caregiver before, during, and after a transplant. The caregiver is usually a family member or a close friend available to help with basic day-to-day medical and practical issues, as well as provide emotional support.
To have an outpatient transplant, you must have a clear caregiver plan. There are no exceptions. Your transplant team will review this with you. Your caregiver must be available 24 hours a day, 7 days a week during the transplant. Your caregiver will receive specific instructions from your transplant team about what a caregiver needs to do. Some of these responsibilities will include the tasks explained below.
- Gathering information from your transplant team.
- Caring for your catheter.
- Making sure you take your medications and keeping a written record of when you take them.
- Taking your temperature every 4 hours while you are awake and away from the clinic. Keeping a written record of your temperatures.
- Keeping a written record of how much liquid you drink every day.
- Noticing any changes in your condition.
- Telling your transplant team about any new symptoms you may have or changes in your condition.
- Calling for medical help in an emergency.
- Escorting you to and from your daily visits at the hospital.
- Dealing with financial and insurance issues
- Preparing your meals according to a low-microbial diet
- Maintaining a clean environment in your NY Presbyterian Guest Facility, apartment, or house
- Keeping family members and friends up to date about your condition
- Managing the number of visitors you have and keeping you away from anyone who is sick.
- Paying attention to your moods and feelings.
- Communicating with you and listening to you.
- Understanding your needs and your decisions.
Choosing the right caregiver
During an outpatient transplant, being a caregiver is a full-time, 24-hour, 7-day a week responsibility. It is tiring, demanding, and stressful, especially if your condition, schedule, or treatment changes.
During your transplant, your caregiver must take you to and from your daily visits to the Outpatient BMT Clinic. They may not be able to work and will need to stay with you for most of the day and night. While you are in the Outpatient BMT Clinic for daily visits, your caregiver can take some personal time. This is something we strongly recommend.
It is important for your caregiver to maintain a positive attitude, stay calm, and be flexible while providing you with the support and encouragement you need. It’s important for you to understand that the caregiver role is challenging and that your caregiver may at times feel overwhelmed by the responsibilities.
Take time now to think about who you would like to be your caregiver. It should be someone you trust and who can take the time to care for you. Your caregiver should be someone who can offer you the practical and emotional support you need. If you don’t have just 1 person to serve as your caregiver, then it’s okay to have more than 1 person share the role. However, it’s best to limit the number of caregivers to 1 or 2 people.
If your caregiver becomes sick or shows any signs of a cold or flu (cough, temperature, sore throat) 1 week before or any time during your transplant, tell your transplant team right away.
Resources for caregivers
Caregivers can experience physical, emotional, spiritual, and financial distress. Resources and support are available to help manage the many responsibilities that come with caring for a person having a transplant. For support resources and information, contact your transplant social worker. We have included a useful resource titled Caregivers’ Guide for Bone Marrow/Stem Cell Transplant with this guide.
At MSK, our Caregivers Clinic provides support specifically for caregivers who are having difficulty coping with the demands of being a caregiver. For more information, call Dr. Allison Applebaum at 646-888-0020 or go to: www.mskcc.org/cancer-care/doctor/allison-applebaum
Whether you’re having an inpatient or outpatient transplant, being apart from your children will be difficult for you and your family. We strongly recommend that you talk with your social worker about your concerns and develop a plan to maintain strong ties to your children during your transplant.
Below are some things that others have done to remain in contact with their children during their transplant:
- Talk with children regularly using programs or apps like Skype™, Google Hangouts, or FaceTime. Set up a time that you talk to them each day, such as when they get home from school and before they go to bed. Get into a routine of using the computer to see them and talk to them.
- Paint or create other crafts to send home. Ask a member of your healthcare team to arrange for volunteers from the Patient Recreation Center to bring you supplies.
- Use your cell phone or a tape recorder to record yourself reading your children’s favorite stories. Upload these recordings to the web, give them to your caregiver, or e-mail them to your children. They can read along with these stories while listening to your voice.
- Keep copies of your children’s favorite stories with you in your hospital room. At night, you can use Skype to read along with them before they go to sleep.
- Decorate your hospital room with your children’s artwork and picture of the family.
- Give your children a special coloring book or journal for times when they miss you, or when feelings are difficult. Your caregiver can bring the colorings to you. You can talk with your child about them over Skype or on the phone.
We know that nothing will replace physical contact between you and your children, but we strongly encourage you to use all of the technology that’s available to maintain a strong bond with them while you are away.
For more help maintaining your relationship with your children, contact your social worker.
Before you become a transplant candidate, your overall physical condition will be evaluated. You will need to make several trips to MSK to have tests. We often refer to this as the “work-up” or “restaging” period. During the work-up, you will need to have some, but not necessarily all, of the following tests:
- Chest x-ray — This is done to ensure your lungs are clear and there is no evidence of infection or other problems.
- Blood tests — These are done to evaluate several things, including kidney function, liver function, blood counts, and past exposure to certain viruses.
- Urine test — This is done to determine if there is anything abnormal in your urine.
- Chest x-ray — This is done to ensure your lungs do not have any infection or other problems.
- Computed tomography (CT) scan — This is a radiology test that provides more detailed images of soft tissue and bone than a standard x-ray. CT scans sometimes require contrast dye that you drink or have injected into your veins. It is very important to tell your doctor if you know you have an allergy to contrast dye, seafood, or iodine. If you have a mild allergy, you can still receive contrast dye, but will need medications before receiving the dye to prevent a reaction.
- Positron emission tomography (PET) scan — This is a radiology test that is sometimes used to evaluate the activity and extent of cancer.
- Skeletal survey — This is done to look for bone damage caused by cancer and is usually reserved for people with multiple myeloma. It involves taking multiple x-rays of the major bones in your body and can take a few hours to complete.
- Electrocardiogram (EKG) and Echocardiogram (ECHO) — This is done to give your transplant team information about your heart.
- Pulmonary function tests (PFTs) — These are breathing tests that measure your lung function.
- Bone marrow aspiration and biopsy — A bone marrow aspirate is a small sample of bone marrow, usually taken from the back of your hip. Your hip will be numbed, a needle will be inserted into the bone marrow, and a small amount of bone marrow liquid will be taken out. A bone marrow biopsy may be performed at the same time. This biopsy involves collecting a tiny piece of bone for examination. This is done to evaluate how well your bone marrow is producing cells and to check for any sign of cancer in the marrow.
- Lumbar puncture (spinal tap) — This is done to check for abnormal cells in the fluid that surrounds your brain and spinal cord. This fluid is called cerebrospinal fluid (CSF). A small needle will be inserted through your lower back and a small amount of CSF will be collected. A lumbar puncture is usually only done for certain types of leukemia and lymphoma. It is also sometimes used to inject chemotherapy into the CSF to prevent cancer from spreading there or to treat cancer if it is already there.
- Dental exam — You must have a full dental exam before your transplant. Any cavities, loose fillings, or gum disease should be taken care of before your transplant. This can be done by your own dentist or by our dentist here at MSK. If you see your own dentist, please ask for a letter saying that you have no dental problems. If there are issues, please ask your dentist to contact your doctor’s office to discuss them. Your dental exam can be done up to 3 months before you are admitted to the hospital for your transplant.
These tests are usually done within 30 days of your transplant (Day -30 onwards), but the pretransplant evaluation can sometimes take longer. Your doctor or nurse will explain any other tests that you may need. Your transplant team will work with you and your caregiver to schedule the tests.
The results of the tests will be used to plan your treatment and make sure that it is safe to start your treatment.
Having your preadmission appointment
Once your pretransplant evaluation has been done and you have the date of your transplant, you will have your preadmission appointment. This appointment is usually 1 to 2 weeks before you are admitted to the hospital. At this appointment:
- Your doctor will review your treatment plan with you.
- Your doctor will go over the consent forms and you will sign consent for your transplant (if it has not been done already).
- You will meet with your clinical nurse coordinator, who will give you a calendar outlining your treatment plan, review information, and answer any questions you may have.
- You will meet with your clinical pharmacist again to review the medications you will take during and after your transplant.
- You may be asked to sign a consent form for transfusion (if you have not already). This is because you may need blood or platelet transfusions when your blood counts are low after your transplant. For more information about blood transfusions, read the resource Frequently Asked Questions About Blood Transfusions, located at the back of this guide.
Between your preadmission appointment and when you’re admitted to the hospital, it is very important to call your transplant doctor’s office if you or anyone in your home have any of the following:
- Signs of a cold, such as:
- Runny nose
- Temperature of 100.4°F (38.0°C) or higher
- Open wound
- Any other new problem, even if it seems minor
Your doctor will decide whether your admission for transplant should be delayed. It could be very dangerous to start your chemotherapy while you have an infection, even if it’s just a cold. This is because your immune system will not be able to fight the infection.
You will need a CVC during your transplant. A CVC is a tube that is usually inserted into a large vein (see Figure 2) in the upper chest area (see Figure 3). On the outside of your body, the catheter divides into 2 or 3 smaller tubes, called lumens. A CVC allows your transplant team to transfuse your stem cells, take your blood, and give you fluids, electrolytes, blood transfusions, chemotherapy, and other medications without having to stick you multiple times with a needle. Having a CVC will make your treatment during transplant much more comfortable. The CVC is usually removed 2 to 3 weeks after your transplant.
You will have your CVC placed in MSK’s Interventional Radiology department at Memorial Hospital. Your clinical nurse coordinator will discuss the details of having your CVC placed. If you are outpatient when you have your CVC placed, someone over the age of 18 must take you home. For more information, read the resource Instructions for Interventional Radiology Procedures, located at the back of this guide. For information about how to care for your CVC, read Caring for Your Central Venous Catheter, located at the back of this guide.
The information in this section describes some basic information of what to expect if you are admitted to the hospital during any part of your transplant. This applies whether you have an inpatient or outpatient transplant.
There are 2 transplant units in the hospital. The nurses on each unit are specially trained to care for people having transplants, and all the same guidelines are followed on both floors. You may need to change your room or floor while you’re in the hospital, however we try to avoid this as much as possible.
Your primary nursing team will care for you during your hospital stay. Nurses typically work 12-hour shifts, starting at either 7:00 am or 7:00 pm. During this time, your nurse will communicate the information about what has happened with you and your care during that shift to the nurse taking over.
The hospital environment
- You will be placed in “protective isolation” to lower your risk of getting an infection. Anyone entering your room must clean their hands and wear a mask and gloves. Sometimes, you may need additional isolation precautions. A sign telling your visitors about the type of isolation and what is required will be placed on the door to your room. Although you are on isolation, you may have visitors 24 hours a day, every day, but we recommend that no more than 2 visitors be in your room at any time. Children 7 years or older may visit as long as they follow our isolation procedures. More information about visitors is discussed below.
- You will be in a private room that has a bathroom for your use only.
- Your room will have Wi-Fi and a TV.
- You will be connected to an IV pole with electronic pumps during most of your hospital stay.
- Your healthcare team will tell you about how to prevent falls while you’re in the hospital. If you are at risk for falling, someone will help you get to the bathroom.
Testing and evaluations
- Before 6:00 am every day, a member of your healthcare team will weigh you and take a sample of your blood. Your blood will be checked to see how your white blood cells, red blood cells, and platelets are recovering. Other blood tests will be done as needed to check your kidney and liver, monitor for infections, check the level of chemotherapy or other medications in your blood, and to help evaluate your overall condition.
- A member of your healthcare team will take your vital signs (e.g., blood pressure, heart rate, breathing, pain level) every 4 hours, even during the night.
- A member of your healthcare team will measure your urine throughout the day. It’s important that we know how much urine you are making.
Your family and friends are welcome to visit you. One caregiver can stay overnight with you. However, anyone who has symptoms of an illness (e.g., cough, rash, fever, diarrhea) or who feels they may be coming down with an illness should not come visit you. This is also true for people who could have recently been exposed to someone with an infection.
- All visitors must follow the isolation instructions that are posted on your door. Your visitors must remove their mask, gloves, and gown before leaving your room. We consider age 7 to be a reasonable age to be able to follow isolation instructions.
- All visitors must use the visitor’s restroom in the hallway, not the restroom in your room. This is to minimize the spread of bacteria in your room.
- All visitors must clean their hands each time before they enter your room. The instructions are listed below:
- To wash your hands with soap and water, wet your hands, apply soap, rub them together thoroughly for 15 seconds, then rinse. Dry your hands with a disposable towel, and use that same towel to turn off the faucet.
- If you’re using an alcohol-based hand sanitizer, cover all of your hands with it, rubbing them together until they’re dry.
- Fresh-cut flowers and live plants are not allowed in your room. Please tell family and friends not to bring or send them.
Even though you will feel tired after your chemotherapy and your transplant, you should still try to remain active and get out of bed every day. It’s important to be safe, so ask for help when getting up.
We encourage you to walk around the unit. If your white blood cell (neutrophil) count is high enough, you can walk in the hallway before 7:30 am and after noon. You must wear a mask and gloves while you are walking around the unit. Your nurse will tell you if you also need to wear a gown when walking in the hallway. You should not leave the floor for walking or exercise. Your physical therapist will evaluate you early during your hospitalization and prescribe an exercise program that’s right for you.
Each room has a call bell that is monitored 24 hours and a day, 7 days a week. If you need something, please say exactly what you need so we can send the right member of your healthcare team member to help you. Your unit assistant will be able to call the team member directly using a personal voice communicator. It looks like a phone that goes around the neck.
Your diet will be planned by your transplant team. You will be given a menu and instructions on how to order your meals. Room service will deliver your meals to you.
In general, everyone having a transplant is placed on a low-microbial diet. Your dietitian will discuss this with you. For more information, read the resource
Low-Microbial Diet, located at the back of this guide. If you keep kosher, have diabetes, or follow other specialty diets, tell your dietitian so that we can prepare your meals properly. Your dietitian is also available to help you plan your meals.
You will be expected to shower daily. Your patient care technician will be in your room when you’re showering to help you and to make sure you’re safe.
It is important that you take good care of your mouth. This will help to reduce infections and mouth sores. Your nurse will go over this with you.
During an outpatient transplant, you will receive all of your care, including chemotherapy, transplant, and post-transplant care, in the Outpatient BMT Clinic. The clinic is located on the 4th floor of the hospital. You should arrive at the clinic at your scheduled time. You will visit the clinic every day and will only be admitted to the hospital if you need more care than can be provided to you as an outpatient.
When you come to the clinic, you should wear comfortable clothing that allows for easy access to your CVC (e.g., shirts that open at the front, sweatshirts, or large t-shirts). Do not wear clothing that is difficult to take off or put back on.
- After you check in and are taken to a room, your transplant team will check your temperature, blood pressure, heart rate, oxygen level, pain, and weight, and ask you about any symptoms you may have. They will also examine you and check your blood counts, electrolyte levels, and kidney function.
- After they examine you, you will wait in your room for your test results to return. This can take several hours. This is a good time for your caregiver to take a break, take some personal time, or run errands. You will be safe in the care of your transplant team. We highly recommend that your caregiver leave the hospital and take this time to relax. You will have an entertainment unit with a TV and a computer to pass the time. Your meals will be provided for you.
- Once they receive the results from your blood tests (sometimes referred to as “labs”), your transplant team will make decisions about your care. The rest of your clinic visit that day will depend on your test results. Based on your test results:
- Your healthcare provider may give you fluids through your IV.
- Your healthcare provider may give you an infusion of platelets, red blood cells, or other blood components.
- Your healthcare provider may change some of your medications.
- Your treatment could be left as is.
You’ll stay in the clinic until all the treatments you need are completed, and then your caregiver will take you back to your nearby apartment or NY Presbyterian Guest Facility. There, your caregiver will continue to monitor your temperature and how much liquids you drink.
What you should bring to the outpatient clinic
When you come to clinic every day, bring the following:
- A list of all prescription and nonprescription medications you are taking, along with dosages and frequency. This should include patches, creams, vitamins, nutritional supplements, herbal products, and over-the-counter medications.
- All the prescription medications you were instructed to take during the transplant period.
- Your temperature and liquid intake diary. Your caregiver will use this to keep track of your temperature and liquid intake while you’re away from the clinic.
- Books, newspapers, an audio player, a laptop, or tablet computer—whatever you need to pass the time.
- A notebook to write down information and any questions you or your caregiver may have.
When you’re not in the Outpatient BMT Clinic, your caregiver will have the responsibility of caring for you.
Monitoring your temperature and how much you drink
From the time you start receiving your chemotherapy, your caregiver must take your temperature every 4 hours while you are away from the Outpatient BMT Clinic. You will be given a thermometer. Your caregiver must also monitor all of the liquids you drink, write it in the Temperature and Oral Intake Log, and bring it to the clinic every day.
If your temperature is 100.4°F (38°C) or higher, your caregiver needs to take you to Urgent Care Center as instructed in your BMT Emergency Guide. While you are on your way there, call one of the numbers listed below:
- If it is between 8:00 am and 7:00 pm, call the Outpatient BMT Clinic at 212-639-3122.
- If it is after 7:00 pm, call 212-639-2000 and ask for the doctor covering bone marrow transplant.
Monitoring you for bleeding
If you have any bleeding, always tell someone from your transplant team. If you notice that you’re bleeding and are you’re not in the clinic, take the following steps right away:
- Apply direct pressure on the bleeding site. If you are bleeding from your nose, apply ice over the bridge of your nose.
- After applying pressure, follow the BMT Emergency Guide. If it is between
8:00 am and 7:00 pm, call the BMT Outpatient Clinic at 212-639-3122. If it is after 7:00 pm, call 212-639-2000 and ask for the doctor covering bone marrow transplant.
Call your doctor right away if you have any of the following while you’re not in clinic:
- Black bowel movements, blood in your stool, or rectal bleeding
- Blood in your urine
- A headache that does not get better, blurred vision, or dizziness
- Cough up blood, vomit blood, or get a nosebleed that doesn’t stop after a few minutes with applied pressure or ice
The 5 Phases of Transplant
There are 5 phases of transplant: 1) Conditioning; 2) Transplant day to engraftment; 3) Engraftment to day of discharge; 4) Early convalescence; and 5) Late convalescence (see Table 1). It is important to realize, however, that these phases are not always exact, as everyone’s transplant timeline is unique. Also different, below is a table that describes what we consider the 5 phases of a stem cell transplant. We will go over each phase in more detail in the following pages. The time frames given are not exact, and there is some usually some overlap from 1 phase to the next.
Table 1: Phases of transplant
Day of hospital admission to Day 0 (transplant day)
*Start date varies depending on which conditioning regimen you will receive
Day 0 to engraftment (blood count recovery)
Blood count recovery until discharge
Discharge to 1 year after transplant (or longer)
1 year after transplant and onward
Phase 1: Conditioning
Conditioning is another name for the treatment that you will receive to prepare your body for the transplant. During conditioning you will receive high doses of chemotherapy and sometimes, radiation therapy. The chemotherapy you receive depends on your cancer type, treatments you’ve had before, and your treatment plan. The purpose of conditioning is to kill any cancer cells that are still in your body.
The day of your stem cell transplant is called day zero. The days before transplant are negative numbers, and days after transplant are positive numbers. For example, conditioning starts before transplant, so the days of chemotherapy are assigned negative numbers (e.g., day -4, day -3, day -2, etc). Depending on your treatment plan, you may have 1 or multiple days of chemotherapy. Similarly, the days after transplant are assigned positive numbers day (e.g., Day +1, Day +2, etc.).
Your nurse coordinator will work with you to plan your schedule, provide you with a treatment calendar, and tell you the date of your treatment. Your transplant team will usually know an approximate time for the transplant 1 day before stem cell infusion on day 0.
Before you receive your chemotherapy, a number of safety checks will be done to make sure everything is correct. Once all the safety checks have been completed, your nurse will give you IV fluids (to keep you hydrated), medication(s) to keep you from getting nauseous, and chemotherapy through your catheter (see Figure 4).
Conditioning kills cancer cells, but it also kills normal dividing cells. This causes side effects, including fatigue (feeling tired), low blood cell counts, temporary loss of immune function, hair loss, mouth sores, nausea, vomiting, diarrhea, and infertility (not being able to have children naturally).
Your transplant team will help you and your caregiver understand and prepare for these side effects. Before you start treatment, make a list of questions that you would like to ask about these side effects. Talk through these questions with your caregiver and transplant team.
Fatigue is expected from conditioning. You should still try to remain as active as possible throughout your transplant. Limit the amount of time you spend in bed, and walk a little every day. Your physical therapist will recommend activities for you.
Low white blood cell count, neutropenia, and risk for infection
White blood cells make up your immune system. The purpose of your immune system is to protect your body against infections. There are many different types of white blood cells. One type of white blood cell, called a neutrophil, travels to the site of an infection and plays an important role in starting the immune response to fight germs. At some point after conditioning, the number of white blood cells and neutrophils in your blood will temporarily drop to zero. This will put you at risk for serious, life-threatening infections. When neutrophils are at very low levels, it is called neutropenia. Infections that occur in people with impaired immune systems are called opportunistic infections.
To prevent you from getting an infection, you will be started on prophylactic (pro-fe-lac-tic) medications. Prophylactic medications are given before there is an infection. You will get medication to try to prevent bacterial infections (antibacterial), fungal infections (antifungal), and viruses (antiviral) early in your transplant journey. Even with these medications you may still develop fevers in the first 2 weeks after transplant. Fever is an important sign of infection. If you develop a fever during transplant, your transplant team will perform tests, such as blood and urine tests, to look for infection. X-rays or other radiology tests may also be done. You will be given stronger antibiotics through your CVC to help fight the infection. Most infections are treated effectively with antibiotics.
Avoiding sources of infection
During the transplant process, it is critical to avoid possible sources of infection. This is easier said than done. You and your caregiver will need to be careful about seeing visitors, what you touch, and where you go. While your white blood cell count is low, you should try to avoid:
- Shaking hands: If you shake hands with someone, use an alcohol-based hand sanitizer, like Purell®, afterward.
- Contact with animals, including your pets — they can’t stay with you during your transplant.
- Anyone who has symptoms of illness (e.g., cough, rash, fever, diarrhea) or may have been exposed to a contagious disease.
- Contact with soil or dirt. Do not keep any plants in your room.
All visitors should be able to follow infection control precautions, including washing their hands, wearing a mask, and reporting symptoms of an illness. We consider age 7 to be the youngest age able to reliably follow these requirements.
You and your caregiver need to watch for visitors that have any signs of illness and ask them not to visit. We know it’s hard to tell friends and family not to visit. We recommend using an app or programs like Skype™, Google Hangouts, or FaceTime to keep in touch with friends and family when you are neutropenic.
Eating a low-microbial diet
When you have a low white blood cell count you will need to adhere to what is called a low-microbial diet. This diet helps lower the risk of getting sick from food-borne illnesses.
A low-microbial diet contains fewer microbes (also called microorganisms) than what are usually found in food. Microbes are tiny living organisms, like bacteria, viruses, fungi (yeast, molds). Microbes attach to food and grow, but often cannot be seen, smelled, or tasted. They can grow on any type of food but are more likely to grow on dairy products, unrefrigerated food, undercooked food, certain fruits and vegetables, unpasteurized juices, and vegetable sprouts.
To lower your risk of getting an infection from foods:
- Eat only foods that you know have been stored properly and are safe to eat.
- Store food safely.
- Handle food safely.
- Eat only food that you know has been prepared and cooked in keeping with a low-microbial diet.
- Cook foods thoroughly.
Read the resource Low-Microbial Diet, in the back of this guide. Follow the guidelines very carefully when you or your caregiver is buying, handling, preparing, and cooking food. Also remember to clean your hands before meals and after using the bathroom.
Keeping yourself clean is very important while you are neutropenic.
You should shower or bathe daily using Hibiclens® skin cleanser. Hibiclens contains a fast-acting antiseptic called chlorhexidine gluconate (CHG) that kills germs living on your skin and will reduce your risk of infection. It works for up to 6 hours after use.
Instructions for using Hibiclens
- If you are washing your hair, shampoo and rinse thoroughly.
- Wash your face with regular soap.
- Rinse your body with warm water from the neck down.
- Apply Hibiclens to a washcloth or directly to the skin being cleansed.
- Wash gently. Do not dilute the Hibiclens.
- Rinse thoroughly with warm water and pat yourself dry.
Important points to remember when using Hibiclens
- Do not use Hibiclens if you are allergic to chlorhexidine.
- Do not use Hibiclens on your face, ears, genital area (between your legs), or on deep wounds.
- Do not use regular soap, lotion, powder, or deodorant after washing with Hibiclens.
- Your anal and genital areas should be washed carefully with antibacterial soap.
- Your nurse will instruct you on guidelines for bathing and showering.
Caring for your mouth
While you’re neutropenic, you will need to change the way you brush your teeth and care for your mouth. This will help to avoid infection and bleeding.
Follow these guidelines to take good care of your mouth:
- You will be given a mouthwash to rinse your mouth before and after meals and at bedtime. The number of rinses may be increased to every 2 hours, depending on how your mouth feels. Most store-bought mouthwashes contain alcohol, which can irritate and dry your mouth and throat, and should not be used.
- Use an ultra-soft toothbrush.
- You can use store-bought toothpaste.
- Do not use dental floss.
- Avoid licking your lips. It increases dryness and chapping.
- Apply a lubricant like Burt’s Bees®, ChapStick, or A&D ointment after you clean or rinse your mouth and every 2 to 4 hours as needed. This will help keep your lips moist.
- To avoid an infection in your mouth, your doctor may prescribe an oral antifungal medication. Use it as instructed.
- If your mouth becomes sensitive, avoid hot, spicy, acidic, or coarse foods. You may prefer soft or liquid food served chilled or at room temperature.
- If you have a lot pain from mouth sores, your healthcare provider will give you pain medication.
Red blood cells use a substance called hemoglobin to carry oxygen from the lungs to the tissues in all parts of the body. After conditioning, the number of red blood cells in your blood will drop. This condition is called anemia and results in less oxygen delivery to the body. Anemia is sometimes treated with blood transfusions. Some of signs of anemia include:
- Feeling more tired than usual
- Rapid heartbeat
- Shortness of breath
- Headache, lightheadedness, or dizziness
- Pale skin
Low platelet count (thrombocytopenia)
Platelets are the cells that clump together to form a clot to help stop bleeding. After conditioning, the number of platelets in your blood will drop. This condition is called thrombocytopenia and increases your risk for bleeding. The most common areas of bleeding are the nose, mouth, skin, and gastrointestinal tract. Platelet transfusions are given if the platelet counts drop below 10,000 or if you are bleeding.
You will need to take these special precautions if your platelets become very low:
- Avoid sharp objects, such as razors, scissors, and nail clippers. You should only shave using an electric razor. Do not shave with a razor that has a blade.
- Do not have manicures, pedicures, waxes, electrolysis, or tattoos.
- Do not have any dental work done.
- Follow the guidelines for mouth care as previously described.
- Do not use rectal suppositories, enemas, or tampons.
- Do not take your temperature in the rectum.
- If you are straining to have bowel movements, ask someone from your transplant team for a stool softener or laxative.
- Avoid tight clothing or any clothing that you have to strain to put on or take off.
You should avoid any activities that may result in injury. These include:
- Contact sports
- Climbing ladders
- Strenuous exercise
- Weight lifting
Some medications make it more difficult for your blood to clot and are very dangerous for anyone with a limited ability to clot and heal. You should only take medications prescribed by your medical team. Do not take:
- Aspirin or products that contain aspirin
- Nonsteroidal anti-inflammatory drugs (NSAIDs), like ibuprofen (Advil®)
- Vitamin E
You should always tell your transplant team if you have any bleeding. Call your doctor if you develop any symptoms of bleeding, such as:
- Easy bruising
- Faint, tiny, pin-point red dots on your torso, arms, or legs
- Vaginal spotting or heavy menstrual bleeding
- The appearance of broken blood vessels in the whites of your eyes
- Blood in your urine
- Headache that does not get better, blurred vision, or dizziness
- Coughing up blood, vomiting blood, or a nosebleed that doesn’t stop after a few minutes with applied pressure or ice
- Black stool or blood in your stool
Nausea and vomiting
Nausea and vomiting are common side effects of treatment. Chemotherapy acts on a specific part of your brain that may trigger nausea and vomiting. Nausea and vomiting can also be caused by stress or just the thought of getting chemotherapy. Nausea and vomiting can start during conditioning or may be delayed for several hours or days. The amount of nausea and vomiting you have will depend on the type of chemotherapy you will receive. Newer anti-nausea medications have made nausea and vomiting much more manageable now than in the past. To prevent and control nausea, you will be started on an anti-nausea medication before conditioning starts. If the medication you are taking isn’t helping, tell your transplant team. You may need to try a different medication or take more than one kind of antinausea medication to feel better. Your transplant team will work with you to prevent and treat nausea and vomiting.
Diarrhea is frequent, loose, watery bowel movements. It can also cause stomach cramps, gas, and pain in the stomach or rectal area. Diarrhea can be caused by cancer treatments, various medications, infection, stress, or other medical conditions. If you are having a lot of diarrhea, you can become dehydrated from loss of body fluids. If your diarrhea continues for more than 24 hours, call your transplant team. Medications are available to treat diarrhea but do not take any over-the-counter medication until you have been evaluated by your transplant team.
Constipation is a condition in which there is difficulty in emptying the bowels, usually associated with dry, hardened stool. The normal time between bowel movements varies for each person. If you are having fewer bowel movements than what is normal for you, or if you haven’t had a bowel movement for more than 2 days, you may be constipated. There are many causes of constipation, including not drinking enough liquids, not eating enough fiber, decreased activity, and medications, including chemotherapy, anti-nausea medications, and pain medications. Medications are available to treat constipation. Tell your nurse or medical team if you haven’t had a bowel movement for more than 2 days.
Conditioning kills the cells that line the mouth and digestive tract, resulting in irritation. This is known as mucositis. Mucositis can present as redness, swelling, tenderness, and sores on the lining of your mouth, tongue, and lips. These changes can result in discomfort, pain, or both that make it difficult to eat or swallow. Medications, including pain medications, are available to treat mouth sores. Tell your nurse if you are having any of these symptoms so that they can be treated.
Conditioning kills the cells that make your hair, so most people having a transplant lose their hair. We know this can be a very difficult and upsetting experience. Like many people being treated for cancer, you can choose to cut your hair short before your transplant to take control of this process and to lessen the shock of losing your hair. Talk this through with your caregiver, friends, and family.
Before your transplant, it is also a good time to think about whether you would like to wear a wig. Modern wigs can look very natural and wearing one may make you feel more comfortable. A list of wig stores in New York is included in the resource Hair Loss During Cancer Treatment, located at the back of this guide. You can get one while you still have your hair, or bring a clipping of your hair, if you’d like your wig to match your natural hair color. Ask your doctor for a prescription for the wig, as some insurance companies will reimburse some of the cost.
Skin changes are common after conditioning and include increased dryness, flaking, discoloration, and darkening. When you bathe, use soap that that is labeled for “sensitive skin.” Use alcohol-free lotions, creams, or oils to help relieve the dryness. Your skin will become more sensitive to the sun and may burn very easily, which in turn will put you are higher risk for skin cancer. Avoid direct sunlight as much as possible. When outdoors, wear a sunscreen with an SPF of at least 30 and protective clothing, like long-sleeved shirts, long pants, and a hat. Skin is the most common site for cancer, and sun protection reduces the risk of skin cancers.
Your nurse will tell you how to manage skin reactions during your treatment.
The day between your chemotherapy and your transplant day is a day of rest. This rest day allows time for the chemotherapy to work and then leave your body, so that when you receive your stem cells, there will be no trace of chemotherapy left in your body to harm the newly transplanted stem cells. It is important to note, however, that some conditioning regimens do not have a day of rest. This will be reviewed with you by your clinical nurse coordinator and noted on the calendar you are given prior to admission.
Now that you’ve received chemotherapy to kill the cancer cells in your body, it’s time for your stem cell infusion—your transplant.
On Day 0 (transplant day), the stem cells that were collected and stored before transplant will be reinfused into your bloodstream through your CVC. The stem cells will be pushed from a large syringe or transfused from a bag, like a blood transfusion. This will take place at the bedside. After they are infused, the stem cells will travel to the bone marrow and make new blood cells.
Your stem cell infusion
- You will be given medications about 30 minutes before your transplant to help reduce side effects that you may experience during the infusion.
- Your stem cells will be brought to the bedside.
- Your stem cells will be infused through your CVC. You will be closely monitored and your vital signs will be checked frequently during and after the infusion.
- You may experience some side effects during and after your infusion. The common side effects are nausea, vomiting, tickle in your throat, or a cough. Other less common side effects that can occur include fever, chills, and low blood pressure.
It’s important that you communicate with your transplant team and with your caregiver during your transplant. Let your transplant team know how you’re feeling and tell them if you experience any side effects. If you do experience side effects, your transplant team will treat your symptoms.
During and after your transplant, you may notice a strong, garlic-like taste in your mouth. Your urine, sweat, and skin may also have a garlic-like smell. You may not notice the smell but those around you will. This smell is caused by the preservative used to store your stem cells and will gradually go away over 1 to 2 days. The Nutrition Department will give you lemons to cut up and use as safe, natural air fresheners.
Your urine may look discolored, ranging from pink-tinged to bloody, for 24 hours after your stem cells are infused. This color change is due to your body getting rid of the byproducts of the stem cell infusion.Back to top
Phase 2: Transplant Day to Engraftment
Once you’ve had your transplant, you will enter a period of watching and waiting until your blood counts recover (called engraftment). During this waiting period, your old blood cells will die and your blood counts will drop to their lowest levels. At some point, usually around day +5, your immune system will not work at all until engraftment. During this time you will be at very high risk of getting an infection. You will need to avoid sources of infection by cleaning your hands regularly and eating a low-microbial diet. You will be given some medications to help protect you from certain infections. You will be closely monitored for any signs of infection and will be treated with antibiotics, as needed. In addition to infections, other potential complications during this waiting period include anemia, bleeding, and continued or new side effects from conditioning. The management of these side effects is as described in the Phase 1 section.
Here is a list of things that will happen during this phase:
- Testing — You will undergo blood tests and other tests as needed to monitor your progress. You will have blood drawn every day.
- You may continue to have side effects from the conditioning, as described earlier. You will be given medication to minimize the side effects and increase your comfort.
- Low-microbial diet — Because you are neutropenic, you will eat a diet that contains a low number of potentially harmful microbes.
- Transfusions — You may need to receive a blood transfusion to boost the numbers of red blood cells and platelets in your bloodstream.
- Recovery of your blood counts — Over time, as your stem cells engraft and begin to produce new blood cells, your blood counts will improve.
- Exercise — You will try to remain physically active after your transplant by limiting the amount of time you spend in bed and walking a little each day. Follow the recommendations that your physical therapist gives you.
You will be at risk for bacterial, fungal, and viral infections for several months after your transplant. They are a major risk in the early recovery period until your new bone marrow grows and makes white blood cells to fight infection. You will still be at risk for some infections while your immune system recovers during the first 2 years after your transplant.
Fever is one important sign of infection. If you develop a fever, you will be evaluated for infection with blood and urine tests, at a minimum. X-rays or other radiology studies may also be performed. You will be given strong intravenous antibiotics to help your body fight the infection. Nearly everyone will develop fever during the first 2 weeks after their transplant. Most infections are treated successfully with antibiotics.
Your doctors and nurses will try to prevent you from getting infections. You will likely be given medications that are used to treat infections, which can help prevent infections in people who have had a transplant. You will receive antiviral medications to help prevent some viral infections you may have had in the past from coming back after your transplant. These viral infections can include cold sores, recurrence of genital herpes, and shingles.
People whose immune systems are not working well can get infections that would not occur in healthy people. These are called opportunistic infections. You may need medication to help protect you from these infections. You will be at risk for them until your white blood cell count and immune system return to normal.
Your platelet count will be low. Since platelets form blood clots, you will be at risk for bleeding. The mucous membranes of the nose, mouth, skin, and gastrointestinal tract are most commonly affected. You will have platelet transfusions if your count falls below 10,000 or if you have any bleeding.
When your red blood cell count is low, you may experience weakness and fatigue. Your nurse will assist you with your daily activities if you need help. You will be given red blood cell transfusions as necessary. These and all other blood products will be irradiated to prevent harmful side effects.Back to top
Phase 3: Engraftment to Day of Discharge
After your stem cells are infused into your bloodstream, they travel to and enter the bone marrow, where they begin to divide and create healthy new blood cells. This process is called engraftment and usually takes about 10-14 days, but varies depending on your disease and treatment. As engraftment occurs, the number of white blood cells, red blood cells, and platelets in your blood will increase. Red blood cells and platelets usually take a little longer to recover than white blood cells.
During engraftment, you may experience bone pain, a rash, and fevers. These are common and we can usually take care of them easily. Once your transplant team decides that your symptoms are well-controlled or gone, you will be discharged from the hospital and resume care with your primary BMT attending doctor in clinic.
It’s important for you to take part in planning your care after discharge. Your transplant team will work with you before you go home to make plans for your follow-up care.
Before you leave the hospital, you will need to order a MedicAlert bracelet or necklace. Your transplant team will give you an order form and help you fill it out. Your bracelet or necklace should be engraved with the statements “Autologous stem cell transplant” and “Irradiated cellular blood components.” This will let paramedics or hospital staff know what to do if you are in an accident and cannot tell them yourself.
Talk with your transplant team about whether CMV-safe blood components are necessary for you after your transplant. If so, you will also need to have the statement “CMV-safe blood components only” engraved into your MedicAlert bracelet or necklace.
For more information on MedicAlert, go to: http://www.medicalert.org
Even though you may be very happy and feel ready to go home, you may feel nervous. It’s common for people to have some worries and concerns as they get closer to going home from the hospital. At home, you and your friends and family will need to manage your care. Feeling confident and comfortable doing this takes time. During your follow-up visits your social worker can help you get the services you need and give you emotional support.
When you leave the hospital it will take time to adjust to living at home again. You may find that the things you need to do to keep from getting sick may add some stress to your life. Feeling a sense of balance and comfort again will come with time; try to stay as calm and confident as you can.
Your recovery after transplant will be gradual. You probably will not feel the way you did before your illness for a while. You may feel tired and weak, have a less of an appetite, and notice changes in the way things taste and smell. It will also take time for you to get your strength back and to participate in the activities you enjoyed before your illness and transplant.Back to top
Phase 4: Early Convalescence
Early convalescence extends over a long period of time—discharge to 1 year (or longer) after your transplant. The time frames given here are general guidelines; yours may be different. Your transplant team may give you a more exact time frame.
It’s important to remember that although your blood counts are coming back up to normal, your immune system is still very immature and needs time to develop. You will still need to take medications and take steps to decrease your risk for infection.
It usually takes 3 to 12 months for your immune system to recover from your transplant. The first year after transplant is like your first year of life as a newborn baby. During that time, you are at risk for getting an infection. Your transplant team will monitor you closely and tell you what you need to do to keep from getting sick.
Be aware of the signs of infection. Call your doctor if you have:
- A temperature of 100.4° F (38.0° C) or higher. You do not have to take your temperature daily. However, check it regularly if you do not feel well.
- Flushed appearance of the skin, sweating, or shaking chills
- Coughing, sneezing, runny nose, shortness of breath, or chest discomfort
- Any redness, swelling, or pain in your throat, eyes, ears, skin, joints, or abdomen
- Blurred vision or other changes in your ability to see clearly
- Nausea, vomiting, or diarrhea
- Frequent urination, burning with urination, or both
- Irritation in your rectum, including burning and pain
- A rash
- Small blisters, similar to cold sores, around your mouth or on any other parts of your body.
- If you still have a CVC:
- If you develop a fever with or without chills
- If you have any difficulty flushing it
You can catch viruses more easily until your immune system is back to normal. Also, viruses that you had in the past can come back, such as the virus that causes chickenpox and shingles. The virus can come back if you had it as a child. This often starts as pain in your skin with pimples or blisters filled with fluid. The blisters can be tiny or as large as a pencil eraser, and may be painful, itch, or burn. Call your transplant doctor or nurse right away if you have any of these signs. Also call if you are exposed to chickenpox or shingles.
Once your immune system has recovered, you will need to get your vaccinations again (see Phase 5 section). This usually starts about 1 year after your transplant; however, your transplant team will determine when the timing is right for you.
There are certain precautions you can take to decrease your chance of getting an infection. Below, we provide some guidelines for you to follow.
While you are recovering from your transplant, keeping yourself clean is very important to help prevent infections. Follow the guidelines below:
- Shower or bathe every day. Use a mild soap such as Dove® or Caress®. Do not use Ivory® or a deodorant soap because they can dry out your skin. Be sure to wash under your arms and in your genital area. Use a washcloth and towel that are only for your personal use.
- If your skin is dry, avoid using very hot water. Apply baby oil or a skin moisturizer such as Eucerin® or Cerave®. Put it on after bathing, while your skin is still damp. Gently pat your skin dry with a towel. Do not use lotions containing alcohol because they can make your skin more dry.
- Hair usually starts to grow back about 3 months after transplant. It’s possible that your hair will grow back with a different texture. Hair loss can occur months or years after the transplant, but it’s rare.
- Limit your time in direct sunlight. Your skin will be more sensitive and may burn more easily after your transplant. The medications you’re taking may make this even more likely. Whenever you’re in the sun, protect your skin with a sunscreen that has an SPF of at least 30. Reapply it often. If you expect to be in direct sunlight for 20 minutes or longer, cover your skin with cotton clothing and wear a protective hat. Staying in the sun too long can also make cold sores (herpes simplex virus) come back.
- You can wear contact lenses, but be sure that they are thoroughly cleaned before you put them in. Do not reuse cleaning solution. Be sure to throw away cleaning solutions that have expired. If your eyes are dry, use moisturizing drops.
- You can wear makeup. Purchase all new products after your transplant.
- New nails will grow and replace your old nails. This will happen gradually, 3 to 4 months after your transplant.
- Do not get a manicure or pedicure in a nail salon while your immune system is still recovering. You can do this at home with your own equipment.
- If you still have a CVC, do not allow it to soak in water while you bathe.
- Do not get body piercings or tattoos after your transplant. These increase your risk of hepatitis and other infections.
Continue caring for your mouth as described earlier until your transplant team tells you that can start using an ultra soft toothbrush. You can brush your teeth with an ultra soft toothbrush if:
- Your absolute neutrophil count (ANC) is higher than 500 (sometimes reported as 0.5).
- Your platelet count is 20,000 (sometimes reported as 20) or higher.
Ask your doctor or dentist when you can floss and brush your teeth with a regular toothbrush.
If you wear dentures, you must keep them clean to prevent getting an infection. Soak them every day in any standard denture cleaner, following the directions on the product box. Rinse them thoroughly with tap water. Your dentures may need refitting after your transplant.
If any of your medications are mouth rinses, take out your dentures before rinsing or swishing the medication. This will help the medications work better and will prevent your mouth from becoming reinfected. Tell your doctor or nurse if you have pain or discomfort in your mouth.
It’s common to have a dry mouth for 3 months or longer after your transplant. Do not use alcohol-based mouthwashes or hydrogen peroxide because they will dry and irritate your mouth. Instead, use a mild salt-water rinse, which can be made at home by mixing ½ teaspoon of salt and ½ teaspoon of baking soda in an 8-ounce glass of water. Your dentist may prescribe other rinses. Sucking on sugarless candy or lozenges may also be helpful.
After transplant, your mouth may make less saliva (spit). Saliva is important because it normally helps wash bacteria from your mouth. Having less saliva increases your risk of cavities. Use toothpaste with fluoride. You can also use a mouthwash with fluoride once your mouth is back to normal and is no longer too dry. Allow the mouthwash to sit in your mouth for at least 1 minute, then spit it out; do not rinse.
Your home must be kept as free of dirt and dust as possible. In general, try not to do any chores like dusting or vacuuming for the first 3 months after your transplant. Depending on your energy level, it is fine for you to cook, wash dishes, and iron. Your bathroom should be kept very clean (especially the tub and toilet). Use a disinfectant regularly.
You should not be around any renovations or construction until your transplant team tells you it’s okay. This includes those in process and those done within the past 3 months. Do not repaint your walls or put down new carpets.
Avoid musty areas, like damp basements, where there may be mold. You can use an air filtration system in your home, but it is not necessary.
Do not use a humidifier. Bacteria and mold grow easily in it. A pan of water placed near a heat source may help in the winter. You must change the water every day.
Thoroughly wash all forks, spoons, and knives with hot water and dishwashing detergent or use the dishwasher. Wash towels twice a week and bed linens once a week. They do not need to be washed separately from the rest of your household. However, use only your own towels and washcloths; do not use the same ones as the other members of your household.
It’s okay to have household plants in your home. However, for the first few months after your transplant:
- Do not touch the soil from household plants unless you wear gloves and
- Do not touch the water in a vase of flowers. Someone else should change the water in the vases daily.
Pets and animals
Animals can carry diseases. They may put you at greater risk for infection while your immune system is recovering. Avoid close contact with animals in a farm or a petting zoo.
You can have a pet in your home and touch it, but it is best that you do not have close physical contact. Do not touch the animal’s saliva or stool (poop). Be sure to protect yourself from bites or scratches. Do not handle or care for birds, lizards, snakes, turtles, hamsters, or rodents while you are recovering. If you have an aquarium and you must clean it yourself, wear gloves to protect yourself. If you have a cat or dog, follow the additional guidelines below until your doctor gives you other instructions.
- Be sure that your pet is up-to-date with immunizations and any
- Have your veterinarian check your pet’s stool yearly for parasites.
- If you have a cat, get it tested each year for feline leukemia and toxoplasmosis.
- Have your pet treated for fleas. If your pet walks through wooded areas, have it screened for ticks every day during tick season (May to November). Discuss with your veterinarian the use of a flea and tick collar.
- Do not clean cat litter boxes or clean up after your dog. Have someone else do these things for you.
- Keep your pets indoors or on your own property whenever possible. This is to help prevent them from picking up diseases from other animals.
- Do not allow pets in your bed.
If you plan to get a pet after your transplant, it’s best that you select a healthy dog or cat that is more than 1 year old. Have it spayed or neutered.
Family and visitors
You can have close physical contact with your family. However, avoid close contact with anyone with a cold or any signs of illness. Wear a mask if you must be in the same room with someone who is sick. People you’re close to should get a flu shot every year.
You can have visitors, but limit them to small groups. Do not visit with anyone who has:
- A cold
- Recently been exposed to chickenpox
- Recently been exposed to herpes
- Recently been exposed to shingles
- Recently been exposed to any other type of virus or infection
- Recently received a vaccine with a live virus such as varicella. There are very few of these, but if someone in your household needs one, that person’s doctor should be told that you are immune suppressed and live in the same household.
Call your doctor immediately if you or any other family member is exposed to chickenpox, shingles, measles, or German measles (rubella).
Walking is an excellent way to regain your strength and endurance. Take regular walks outside, but avoid dirty areas and construction sites. During the first few months after your transplant, avoid the following places when they are crowded:
- Shopping malls
- Movie theaters
- Public transportation
You can go to these places when there are fewer people. Do not take public transportation for at least 3 months after your transplant. Your doctor will tell you when it’s safe to do some or all of these activities.
You can swim in the ocean after you regain your strength and are more active. Pay attention to alerts from the local health department. You can also swim in a private pool that isn’t crowded. Make sure that the pool is chlorinated. You cannot swim in lakes, rivers, or crowded pools until your immune system has recovered. Do not swim if your CVC is still in place.
Platelets are blood cells that help form clots and control bleeding. When your platelet count is low, you are at risk for bleeding. Many people are discharged from the hospital with a low-platelet count. It can take weeks or months for your body to produce normal numbers of platelets. You may need to have platelet transfusions.
Signs of a low-platelet count include changes in the skin, bleeding, or both. Skin changes may include a lot of bruising or petechiae (pe-tea-key-eye). These are tiny, pinpoint, purplish-red spots on the skin that do not disappear when you press them. You may see them on your lower legs or ankles. If you see many petechiae, call your doctor. Other symptoms of a low-platelet count may include bleeding from your gums or nose.
If you went home with any of these signs and they increase in amount or frequency, call your doctor. You must also call your doctor if you have not had any of these and suddenly develop them. It may mean there is a change in your platelet count. If you have an injury that causes bleeding, do not panic. Remain calm and follow the guidelines below for the type of injury:
- Open wounds: If you cut yourself, put a clean, dry gauze pad, towel, or cloth over the cut and press firmly. Apply pressure until the bleeding stops. If the bleeding continues, elevate the wound. For example, raise your arm or prop up your feet. Apply ice to the wound and call your doctor.
- Nosebleeds: If you have a nosebleed, sit up and lean forward slightly. Do not tilt your head back. Squeeze the bridge of your nose firmly between your thumb and forefinger for at least 10 minutes without letting go. If it keeps bleeding, continue to squeeze your nose. Apply a small bag of ice to the bridge of your nose until the bleeding stops. If the bleeding continues longer than 30 minutes, call your doctor.
- Accidents: If you are in an accident, you may need blood or blood products. They should be irradiated to 3,000 rads. Wear your MedicAlert jewelry at all times—it gives the doctor who will be treating you this information. If you are admitted to another hospital, have the doctor call MSK immediately for guidelines on blood products.
If your platelet count is below 50,000 (50), follow the guidelines below:
- Use an electric razor when shaving.
- Use a soft-bristle toothbrush or an oral irrigator such as a WaterPic® so that your gums don’t bleed. Do not use dental floss.
- Do not take aspirin, products that have aspirin, or aspirin-like medications, such as ibuprofen (Advil®) or naproxen (Aleve®). For more information, see the section titled “Common Medications to Avoid.”
- Avoid blowing your nose forcefully.
- If you are constipated (have trouble moving your bowels), call your doctor. You may need more fiber in your diet or a stool softener.
- Avoid activities or sports that can cause injury. If you have any questions or concerns, talk with your doctor.
The time it takes to recover after a transplant varies. Most people find that it takes about 3 months, while others may need more or less time. The time after your transplant is a time of cell recovery and growth. The cells in your mouth, stomach, intestine, hair, and muscles will all regrow. This requires calories and energy. You may feel more tired than you expected. Remember, this fatigue and weakness are common. Each week, you should regain more of your strength.
Around the third month after your transplant, your hair will start growing more quickly. You may feel well enough to start resuming your usual level of activity. From this point on, you will probably feel progressively better. For most people, however, the first 2 to 3 months to 1 year after transplant remain a time of recovery.
Most people find it takes time to regain their strength. It may be helpful to follow a regular exercise plan. When you begin to exercise, start with easy exercises. Your physical therapist can help you decide what type of exercise is right for you. As you feel ready, ask your doctor how to increase your exercise. Do not play contact sports or ski until your platelet count is over 100,000.
Some hobbies, such as woodworking, painting, and model building, use products that can be toxic. Always work in a room with plenty of fresh air and good ventilation. Keep the windows open. Use nontoxic paints and glue. If you have questions or concerns about resuming any of your hobbies, ask your doctor.
Returning to school or work
The earliest you can return to school or work is about 4 months from the time of your transplant. This time frame can vary from person to person and depends on many factors. Some people may feel ready to return right away, while others feel concerned after being away for so long. It may help to begin slowly. For example, start with a schedule of half days or 3 days a week. Most people tell us that thinking about returning is almost harder than the actual event.
Making the transition back to your usual lifestyle can be difficult. Some people have talked about feelings related to changes in their appearance. Hair loss, for example, is hard for many people. Others have trouble concentrating or maintaining their attention span. Many cannot keep up their former pace. Your transplant team is here to talk with you about going back to school or work. You can speak to a social worker, nurse, psychiatrist, or your doctor. We can work with you to find ways to ease your transition.
For the first 3 months after your transplant, avoid traveling outside of the greater New York City area.
If you plan to travel by plane, speak with your transplant team. You must have a high enough platelet count to safely travel by plane.
If you plan to travel out of the country during the first 2 years after your transplant, talk with your transplant team. They may recommend that you see an expert in travel medicine to reduce your risk of infection while abroad, depending on your destination.
Before you go home, ask your doctor when it’s safe for you to have sexual activity. It is important for you and your partner to have answers to your questions. If new questions come up, you can discuss them during your follow-up visits.
Protecting yourself during sexual activity
Until your doctor tells you that your blood counts and immune system have recovered:
- When your platelet counts are low (less than 50,000), avoid sex that involves penetration or contact with mucous membranes. This includes vaginal, oral, and anal sex, and inserting fingers, vibrators, or other sex toys into your vagina or anus. Hugging, cuddling, gentle touching, and kissing skin are other ways you can be intimate with your partner during this time.
- When your platelet count is above 50,000:
- Use latex condoms each time you have vaginal, oral, or anal sex.
- Use a barrier device (condoms or dental dams) any time your partner’s vaginal secretions or semen could enter your mouth.
- Do not have any sexual activity that could expose your mouth to feces.
- Avoid sex that involves contact with mucous membranes if a genital infection is suspected or present in either you or your partner.
For more information about being sexually active during and after treatment, talk with a member of your transplant team, or ask for the following resources:
- You can find the following resources on our website, www.mskcc.org:
- The American Cancer Society publishes 2 resources about sexuality following cancer treatment. They are available for free from your local American Cancer Society or on the ACS website at the links below:
Information for women
After your transplant, you may have:
- Fewer menstrual periods
- No menstrual periods
- Vaginal dryness and discomfort
Vaginal moisturizers are nonhormonal, over-the-counter products that help relieve vaginal dryness and discomfort. They are available in most drug stores or on the Internet. Examples are vitamin E liquid capsules, Replens®, Hyalo GYN®, and K-Y® Brand LIQUIBEADS™.
Vaginal lubricants usually come in a liquid or gel form. They are used to supplement a woman’s own lubrication and minimize dryness and pain during sexual activity. Use these lubricants to make sexual intercourse more comfortable and pleasurable. Examples are Astroglide®, K-Y® Jelly, and Pjur® Woman Bodyglide (a silicone-based lubricant). For more information, ask your nurse for the resource Vulvovaginal Health, or go to www.mskcc.org/cancer-care/patient-education/resources/vaginal-health.
Depending on your treatment, the function of your ovaries may change. This can result in decreased estrogen levels. Your doctor may recommend that you take estrogen supplements after your transplant.
If you need any help or support with these issues, contact the Female Sexual Medicine and Women’s Health Program at 646-888-5076.
Information for men
Some men experience decreased sexual desire after their transplant. As you regain your strength and increase your activities, however this may also change.
Some men also experience erectile dysfunction (ED) after their transplant. ED can be treated with medication, including sildenafil citrate (Viagra®) or tadalafil (Cialis®). There are many other ways to treat ED. Your doctor can refer you to a specialist in our Male Sexual and Reproductive Medicine Program. You can also reach the clinic directly by calling 646-888-6024.
Drinking alcohol and using tobacco
After your transplant, your body needs time to recover. Alcohol can harm your liver and your bone marrow, which is still recovering. This harm can be worse if you’re taking medications that can affect your liver. Do not drink alcohol until your doctor tells you it is safe.
Smoking can lead to a serious lung infection. It can also increase your risk of a second cancer. If you need help quitting, contact our Tobacco Treatment Program by calling 212-610-0507, or go to www.mskcc.org/cancer-care/counseling-support/tobacco-treatment.
Your follow-up visits will be scheduled before you are discharged. In general, you will be seen about 1 to 2 times a week for the first 3 months after your transplant. After that, your appointments will be spaced further apart as long as you are doing well. Some people find it helpful to bring a list of questions that may have come up since the last visit.
When you come to the clinic for your follow-up visits, always wear a surgical mask. Bring a list of all the medications you are taking and the dosages of each one. Make a list of any medications that need to be refilled. If you are going to run out of any medications before your follow-up visit, tell your doctor before your appointment. You will be given prescriptions during your visit to be filled either at MSK or your local pharmacy.
You will have blood tests to check your blood counts, electrolyte levels, and liver and kidney function. Bone marrow studies will be done according to your disease and treatment course.
Some diseases will require lumbar punctures after transplant. A lumbar puncture allows your doctor to give you more chemotherapy in your spinal fluid after your transplant. It can also be given through an Ommaya reservoir, if you have one.
You may need to have intravenous treatments, including antibiotics and blood transfusions. If so, your doctor or nurse will tell you how long and how often you will need them. These appointments are usually scheduled at the same time as your follow-up visits.
At some point after your transplant, you may be referred to our survivorship nurse practitioner clinic. A survivorship nurse practitioner is part of the transplant team and works closely with your doctors and nurses to help with your recovery. This nurse practitioner will also communicate directly with your primary care provider so that information about your transplant is included in your overall healthcare.
After you have recovered from your transplant, go to your local dentist for routine checks. If you need extensive dental work, you may wish to have your local dentist call a dentist at MSK at 212-639-7644 before treating you. Your transplant doctor will tell you when it’s safe to resume all dental care with your dentist.
Tell your doctor or dentist if you have:
- Taken the medications pamidromate (Aredia®) or zoledronic acid (Zometa®)
- Jaw tightness
- Discoloration at your gum line or receding gums
Common Medications to Avoid
Do not take aspirin, any medications containing aspirin, or nonsteroidal anti-inflammatory drugs (NSAIDs) until your doctor gives you other instructions. For a list of these medications, ask your nurse for the resource Common Medications Containing Aspirin and Other Nonsteroidal Anti-inflammatory Drugs (NSAIDs) or go to:
Check the label of any over-the-counter medications that you are thinking of taking to be sure that they do not contain ingredients you should avoid. If you are not sure about whether or not a medication is safe to take, ask your transplant team. Do not take any herbal supplements or home remedies without talking to your transplant team first.Back to top
Phase 5: Late Convalescence
A concern for many people is that their cancer will return. Your risk is higher if you had your transplant when you were in an advanced stage of disease or you were not in remission. Your doctor will follow you closely to watch for any sign of relapse.
Having a transplant takes away all the immunity you had gotten during your life before transplant. This includes the vaccines you received as a child. Because of this, you need to be re-vaccinated with childhood vaccines once your immune system has recovered. This usually happens about 1 year after transplant.
Once it is safe for you to receive vaccines, you will be scheduled for them at MSK. This is because it may be difficult for your primary care doctor to get the vaccines. You will receive only “killed” vaccines at first; these are vaccines that don’t have a live virus. If your body responds to those, you will then receive “partially killed” vaccines, such as those used for measles and shingles.
Vision changes, sometimes due to cataracts, are fairly common after transplant. If you develop any of the following symptoms, see an eye doctor:
- Vision that is cloudy, blurry, foggy, or filmy
- Changes in the way you see color
- Problems driving at night, such as glare from oncoming headlights
- Problems with glare during the day
- Double vision
You may only need a change in your eyeglass or contact lens prescription. Be sure to tell your optician or eye doctor what treatment you had. Try to wait until at least 3 months after your transplant before getting a new eyeglass or contact lens prescription, as your vision can continue to change during the recovery process.Back to top
Caregivers’ Guide for Bone Marrow/Stem Cell TransplantBack to top
This glossary explains terms that you may read in this guide, or hear from your healthcare team. If you hear a word or expression not listed here, don’t be afraid to ask your doctor or nurse.
Absolute neutrophil count - The percentage of polys and bands that are part of your total white blood count. If your ANC is less than 1,000 (or 1.0), you are at high risk for infection.
Ablative therapy (ab-lay-tive) - Treatment that removes or destroys the function of an organ or system. For example, high-dose chemotherapy and radiation before a stem cell transplant is considered ablative therapy because it wipes out your immune system.
Afebrile - Having no fever; normal temperature.
Allogeneic stem cell transplant – A type of transplant where stem cells are taken from a donor and given to a patient.
Alopecia (al-o-pee-shuh) – See hair loss.
Ambulatory - The ability to walk; not confined to bed.
Anal - Related to the anus.
Analgesic - A medication used to reduce pain.
Anaphylaxis - An allergic reaction ranging from relatively mild (hives) to very serious (shock).
Anemia (uh-neem-ee-uh) - Low red blood cell count, which can cause you to feel fatigued and have shortness of breath. Anemia can be caused by a variety of conditions and diseases.
Anesthesiologist (an-es-the-zee-ol-o-jist) - A doctor who specializes in giving medications or other substances that prevent or relieve pain, especially during surgery.
Anesthetic - A medication or other substance that causes a loss of feeling or awareness. Local anesthetics cause a loss of feeling in 1 small area of the body. Regional anesthetics cause a loss of feeling in a part of the body, such as an arm or leg. General anesthetics cause a loss of feeling and a complete loss of awareness that feels like a very deep sleep.
Antibiotic – Medication used to kill organisms that cause disease. Since some cancer treatments can reduce your body’s ability to fight infection, antibiotics may be used to treat or prevent these infections.
Antibody - A protein produced by immune system cells and released into your blood. Antibodies defend against foreign substance such as bacteria. For example, if you get a tetanus vaccine, you will make a protein (antibody) which protects against tetanus, called a tetanus antibody. Each antibody works against a specific substance called an antigen.
Anticoagulant - Medication that reduces your blood’s ability to clot.
Antiemetic (an-ti-eh-meh-tik) - A medication that prevents or relieves nausea and vomiting.
Antifungal - A medication that kills fungi (organisms that cause infections). Patients undergoing treatment for cancer are especially vulnerable to fungal infections.
Antigen (an-tuh-jen) - A substance that causes your body’s immune system to react. This reaction often involves the production of antibodies. Cancer cells have certain antigens that can be found by laboratory tests. They are important in cancer diagnosis and in watching response to treatment.
Antihistamine - A medication used to relieve the symptoms of allergies, such as hives, stuffy nose, etc.
Antimicrobial - A substance that kills microorganisms such as bacteria or mold, or stops them from growing and causing disease.
Antinausea – See antiemetic.
Antioxidants (an-ti-ox-uh-dents) - Compounds that hold back chemical reactions with oxygen and are thought to reduce the risk of some cancers. Examples are vitamins C, E, and beta-carotene.
Apheresis - A procedure in which blood is collected, part of the blood (such as platelets or white blood cells) is taken out, and the rest of the blood is returned to the donor. Also called pheresis.
Aplastic anemia – A disease in which the bone marrow is not able to make enough blood cells.
Artery - A vessel that carries oxygen-rich blood from your heart to your tissues. Blood is under pressure in arteries.
Autologous - Taken from an individual’s own tissues, cells, or DNA.
Autologous stem cell transplant – A type of transplant in which a person’s own stem cells are harvested, preserved, and returned to them.
Axilla (ax-il-la) - Your armpit.
Bacteria (singular bacterium) - Small germs that can cause infection.
Benign - Not malignant or cancerous.
Biopsy (buy-op-see) - The removal of a sample of tissue to see whether cancer cells are present and to determine an exact diagnosis. There are several kinds of biopsies.
Blast cells - Immature blood cells.
Blood - The body fluid that flows through all your vessels except the lymph vessels and performs a number of critical functions. Blood is composed of a liquid portion called plasma and 3 other components: red blood cells, white blood cells, and platelets.
Blood chemistries - Multiple chemical determinations of your blood content. These tests are helpful in assessing your kidney and liver function.
Blood count - A lab study to evaluate the amount of white blood cells, red blood cells, and platelets in your body.
Blood culture - A blood sample taken to find infection in the blood
Blood transfusion - The infusion of red blood cells or platelets into your bloodstream to replace blood loss or to treat anemia.
Blood typing and cross matching - Making sure that the blood from a donor is compatible with yours before a blood transfusion. Blood cells contain factors that are not the same in all people. Before a transfusion can be given, blood samples from you and the donor are typed, or classified, according to which of these factors are present. The 4 principal red blood cell types or groups are A, B, AB, or O. Other factors such as Rh factor must also be checked.
Bone marrow - The spongy material in the center of bones where blood cells are made.
Bone marrow aspiration and biopsy - A procedure in which a needle is placed into the cavity of a bone, usually the hip or breast bone. A small amount of bone marrow is removed and examined under a microscope.
Bone marrow, stem cell, or cord blood transplant - A treatment for cancer, which severely injures or destroys your bone marrow. You are given high-dose chemotherapy with or without radiation (total body irradiation) to kill the cancer cells. The medications also destroy your remaining bone marrow, preventing your body’s natural ability to fight infection. In allogeneic transplantation, the donor of the stem cells is another person. Stem cells can come from bone marrow, blood, or umbilical cord blood. In autologous transplantation, stem cells are taken from the patient. Some of your own bone marrow or stem cells are removed and set aside before treatment and then reinfused into your body. Blood cells start being produced a few weeks later.
Bone scan - An imaging method that gives important information about the bones, including the location of cancer that may have spread to the bones. A low-dose radioactive substance is injected into a vein and pictures are taken to find any abnormalities.
Bowel - Pertaining to your intestines.
Bowel movement - Movement of feces through the bowel and out the anus. Also called defecation.
Brain scan - An imaging method used to find anything abnormal in the brain, including brain cancer and cancer that has spread to the brain from other places in the body. A radioactive substance is injected into a vein and pictures are taken to find any abnormalities.
Breastbone - The long, flat bone that forms the center front of your chest wall. Your breastbone is attached to your collarbone and your first 7 ribs. Also called the sternum.
Capillaries - Tiny blood vessels located throughout the tissues of your body. They connect your arteries with your veins. Substances pass through them to nourish your cells.
Cardiac - Pertaining to your heart.
Cardiomyopathy - Damage to the heart muscle affecting the way the heart pumps blood through the body.
CAT scan or computed axial tomography - A series of detailed pictures of areas inside the body taken from different angles. The pictures are created by a computer linked to an x-ray machine. Also called computed tomography scan, computerized axial tomography scan, computerized tomography, and CT scan.
Cataracts - A clouding of the lens of the eye that can result from radiation therapy.
Catheter (cath-eh-tur) - A thin, flexible tube through which fluids enter or leave the body; e.g., a tube to drain urine.
Central venous catheter - A thin, flexible tube that is inserted into a vein in the upper arm, thigh, neck, or below the collarbone. It is guided (threaded) into a large vein near the heart called the vena cava or into the right atrium of the heart. It is used for taking blood samples and giving liquids, blood transfusions, chemotherapy, and other medications. It avoids the need for repeated needle sticks.
Central venous line - A method of giving IV fluids, blood products, and medications. A catheter is inserted into a neck vein and into your other large blood vessels. There are many different types of central line catheters that may have multiple ports or lumens. Multiple ports allow more than one IV solution to be given at one time. Blood can also be drawn from this type of catheter.
Chemotherapy - Medications used to destroy cancer cells. Chemotherapy is often used with surgery or radiation to treat cancer.
Chimerism studies - A test that shows how much of the blood is from the patient and how much is from the donor.
Clinical trials - Human research studies that test new drugs or treatments and compare them to current, standard treatments. Before a new treatment is used on people, it is studied in the lab. If the lab studies suggest the treatment works, it is tested with people. These human studies are called clinical trials. Your doctor may suggest a clinical trial. Participation is voluntary.
Clot - To change from a liquid form into a solid or semi-solid; for example, when blood clots, it changes from a liquid to a semi-solid, helping to stop bleeding.
Colon - Your large intestine.
Colony stimulating factors (CSF) - Types of growth factors that promote growth and division of blood-producing cells in bone marrow. CSFs are naturally produced in the body. Extra amounts may be given to reduce or prevent side effects of chemotherapy. See growth factors.
Complementary therapy - Therapies used in addition to conventional therapy. Some complementary therapies may help relieve certain symptoms of cancer, relieve side effects of conventional cancer therapy, or improve a patient’s sense of well-being.
Complete blood count (CBC) - A blood test to measure the type and number of blood cells. The values are expressed in percentages.
Constipation - Difficulty having a bowel movement.
Contagious - An illness that can be spread from one person to another. Cancer is not contagious.
Creatinine clearance - A test that compares the level of creatinine in urine with the level of creatinine in the blood. Creatinine is a breakdown product of creatine, which is an important part of muscle. The test helps provide information on kidney function.
Culture - A procedure using a sample of blood, urine, throat secretions, or other biological material. It determines the specific germ (bacteria, fungus, or virus) responsible for an infection. Cultures also help determine which antibiotics may work best.
Cytogenetics - The process of analyzing the number and shape of cell chromosomes. The normal number of chromosomes is 46. Chromosomes may change when a patient develops cancer.
Cytomegalovirus (CMV) - A virus that can cause serious illness in people who have weak immune systems.
Decongestant - A medication that helps shrink mucous membranes and decrease the production of mucus.
Dehydration - Excessive loss of fluids from your body.
Diagnosis - Identifying a disease by its signs or symptoms and by using imaging procedures and laboratory findings.
Diarrhea - Frequent, loose, and watery stools.
Dietitian - A health professional with special training in nutrition who can help with dietary choices. Also called a nutritionist.
Diuretic - Substance that increases the elimination of water and salts (urine) from your body.
Dizziness - A sensation of instability and sometimes a feeling that you are about to fall.
Donor leukocyte infusion - A transfusion of whole blood or isolated lymphocytes that contain a calculated dose of T lymphocytes. This is sometimes given to treat a recurrence of a patient’s original disease or for the treatment of certain viral infections.
Dose - The amount of medication taken, or radiation given, at one time.
Dysphagia - Difficulty swallowing.
Dyspnea - Shortness of breath.
Dystonic reaction - Tightening of your facial and neck muscle. It is a possible side effect of some antiemetic medications.
Echocardiogram (ultrasound cardiography) - A method of obtaining a graphic picture of the internal structure, position, and motion of your heart. It is done by using sound waves directed through your chest.
Edema - Build up of fluid within the tissues; swelling.
Electrocardiogram (EKG) - A method of evaluating your heart’s rhythm and muscle function by measuring electrical impulses.
Electrolytes - A general term for the many minerals needed to provide the proper setting for the cells of your body. Common electrolytes include calcium, sodium, potassium, and chloride.
Emesis - To vomit.
Engraftment - When stem cells infused into the body start to fix in place, grow, and make new blood cells.
Epstein-Barr virus (EBV) - The virus that causes mononucleosis (also called “mono” or “kissing disease”). In patients whose immune system is not normal, it can cause an EBV-associated lymphoma. Symptoms include fever and swollen lymph nodes.
Esophagitis - An inflammation of the esophagus.
Esophagus - A tube that carries swallowed food to your stomach.
Excision - Surgical removal of tissue.
Expectorant - Medication that makes mucus in your respiratory tract thinner and easier to cough out.
Febrile - Fever; elevated body temperature.
Fellow - A physician who has completed residency. May be a fully trained pediatrician or internist and is doing further study to become a subspecialist in a field of interest.
Fertility preservation - A type of procedure used to help preserve a person’s ability to have children. A fertility preservation procedure is done before a medical treatment that may cause infertility, such as radiation therapy or chemotherapy. Examples of fertility preservation procedures include sperm banking, egg freezing, in vitro fertilization with embryo freezing, and certain types of surgery for cervical and ovarian cancer.
Filgrastim - A medication used to increase the number of white blood cells in people who are receiving chemotherapy. Also called Neulasta® or pegfilgrastim.
Fractionated radiation - The total dose of a radiation treatment divided over several days.
Fungi (singular fungus) - A group of microorganisms larger than either bacteria or viruses. They can cause a serious infection when your immune system is compromised.
Gamma globulin - A protein component of blood plasma. It contains antibodies that are helpful against certain infections.
Gastroenterologist (gas-tro-en-ter-ol-o-jist) - A doctor who specializes in diseases of the digestive (gastrointestinal) tract.
Gastrointestinal tract/GI tract - The digestive tract. It is made up of the organs and structures that process and prepare food to be used for energy, such as your stomach, small intestine, and large intestine.
GCSF (granulocyte colony-stimulating factor) - Medications that stimulate the production of neutrophils (a type of white blood cell). These include filgrastim (Neupogen®), pegfilgrastim (Neulasta®), and plerixafor (Mozobil®).
General anesthetic - A medication that puts you to sleep to prevent pain during a surgery.
Genital - Refers to the genitalia (external and internal sex organs and glands).
Gland - See lymph node.
Graft - New stem cells that are growing
Graft versus host disease (GVHD) – A reaction of donor cells (graft) against the patient’s (host) body; can be short-term (acute) or long-term (chronic).
Groin - The area of your body where the legs join the abdomen.
Growth factors - A naturally occurring protein that causes cells to grow and divide. Too much growth factor production by some cancer cells helps them grow quickly. Other growth factors help normal cells recover from the side effects of chemotherapy.
Hair loss - This often occurs as a result of chemotherapy or from radiation therapy to the head. In most cases, the hair grows back after treatment ends.
Harvest - The removal of bone marrow or peripheral blood stem cells to be used for a hematopoietic blood stem cell transplant (HCT).
Hematocrit - The percentage of the volume of whole blood that is made up of red blood cells.
Hematopoietic blood stem cell transplant (HCT) – See bone marrow, stem cell, or cord blood transplant.
Hematologist (hem-uh-tahl-o-jist) - A doctor who specializes in diseases of the blood and blood-forming tissues.
Hematology - The study of blood and blood-forming organs.
Hematology/oncology (HEME/ONC) - A branch of medical science that treats disorders of the blood, blood-forming tissues, and tumor cells.
Hematoma (hem-uh-to-ma) - A collection of blood outside a blood vessel caused by a leak or an injury; a bruise.
Hematuria - Blood in the urine. Urine may be pink, red, or brown (cola colored).
Hemoglobin - The substance in red blood cells that carries oxygen.
Hemorrhage - A term for loss of blood from injury to the blood vessels or by a lack of certain blood elements, such as platelets.
Hemorrhagic cystitis - Bleeding into the bladder that causes bloody urine. It can be caused by certain viruses, as well as certain chemotherapy medications such as ifosfamide or cyclophosphamide.
Heparin - A medication that decreases the ability of blood to clot. It is often used to prevent clotting in central line catheters.
Hepatitis - An inflammation of the liver usually resulting in jaundice.
Herpes simplex - A virus that usually produces fluid-filled blisters on the skin and mucus membranes.
Herpes zoster - A virus that causes shingles, which are painful skin eruptions.
Hives - Itching welts caused by an allergic reaction.
HL-A (human leukocyte antigens) - Proteins (antigens) that appear on white blood cells, as well as cells of almost all other tissues. By typing for HL-A antigens, donors and recipients of white blood cells, platelets, and organs can be “matched.” This helps to make sure the transfused and transplanted cells will survive.
Hodgkin’s disease - A type of cancer that affects the lymphatic system. It occurs in lymph nodes. Named for the doctor who first identified it.
Hospitalist - A doctor who specializes in the care of hospitalized patients.
Host - The person into whom stem cells have been infused.
Hydration - A reference to the amount of water in the body. You may be dehydrated, well hydrated, or excessively hydrated (edematous).
Hyperglycemia - High blood sugar.
Hypertension - High blood pressure.
Hypocalcemia – Not enough calcium in the blood.
Hypoglycemia - Low blood sugar.
Hypokalemia - Not enough potassium in the blood.
Hypotension - Low blood pressure.
Ileus - Severe constipation.
Iliac crest - The top edge of your hip bone. Marrow is usually taken from it for a diagnosis of blood cell diseases.
Immune reaction - A reaction of normal tissues to substances recognized as “foreign” to the body.
Immune system - The system that defends the body against infection from bacteria and viruses. The immune system may also help the body fight some cancers.
Immunity - The state of your body’s defenses against an infection or possibly against a certain cancer.
Immunizations - Vaccines given to help your body resist disease.
Immunosuppression (im-mune-no-suh-preh-shun) - A state in which your immune system does not respond properly. This condition can be present at birth. It can also be caused by certain infections (such as human immunodeficiency virus or HIV), or by certain cancer therapies.
Immunotherapy (im-mune-no-ther-uh-pee) - Treatments that promote or support your immune system’s response to a disease such as cancer.
Implantable port (such as Port-a-Cath®, Infuse-a-Port®, or Mediport®) - A device that delivers fluids, medications, or blood directly into a vein. The entire device is implanted under the skin during surgery and can be used for an extended period of time.
Incubation period - The period between exposure to a germ and the first sign of illness (e.g., chicken pox, from 8 to 21 days).
Indwelling catheter (such as Broviac® or Hickman®) - A central line surgically placed (usually in the chest) and into a large vein in your neck. It is used to give medications, fluids, and blood products. May also be used to draw blood for testing.
Infection - Invasion of the body by disease-producing organisms.
Infectious disease - A disease caused by germs; one that can be passed from one person to another. Cancer is not an infectious disease.
Infertility - Not being able to produce children.
Inflammation - The triggering of local body defenses. It results in the outpouring of defensive cells (“polys”) from the circulation system into the tissues. Frequently associated with pain and swelling.
Informed consent - A legal document that explains a course of treatment and the risks, benefits, and possible alternatives. The process by which patients agree to treatment. If you are under 18 years of age, your parents or legal guardian must also sign this form.
Infusions - The introduction of a fluid into a vein.
Injections - Injections may be given intramuscularly (into a muscle), intravenously (into a vein), subcutaneously (just under the skin), or intrathecally (into the spinal column space).
Inpatient - A patient who is admitted to the hospital for treatment requiring an overnight stay.
Intern - A doctor in the first year of training following graduation from medical school.
Interstitial pneumonia - Inflammation of the lung caused by a virus or due to damage from chemotherapy and/or radiation therapy.
Intrathecal (IT) - Within the spinal column. IT medication is given directly into the spinal column.
Intravenous (IV) - The administration of a medication or fluid directly into the vein.
Investigational drugs - Medications being studied by clinical investigation.
Irradiated - Treated with radiation.
Irradiated blood products - Blood products that have been exposed to a radiation source to inactivate the lymphocytes that could otherwise cause graft versus host disease.
Jaundice - A yellow color of the skin and white portion of the eyes. It is from a buildup of bilirubin, which is a broken down product of hemoglobin. It is a sign of liver disease or a blockage of the major bile ducts.
Kidney - The main organ involved in the filtering of certain bodily wastes. Also maintains the proper mineral and water balance.
Laxative - A substance that encourages bowel movements.
Lesion (lee-zhun) - A change in body tissue; sometimes used as another word for tumor.
Leukapheresis - The process of filtering white cells, leukocytes, or “polys” from the blood of the patient or a healthy donor. These cells may be given to you if you have a severe infection and a shortage of “polys.”
Leukemia (loo-key-me-uh) - Cancer of the blood or blood-forming organs. If you have leukemia, you may have a noticeable increase in white blood cells (leukocytes).
Leukocytes - White blood cells that play a major role in the body’s defense system. The cells are divided into granulocytes, lymphocytes, and monocytes.
Leukocytosis (loo-ko-sigh-toe-sis) - Having more than the usual number of white blood cells.
Leukopenia - Decrease in white blood cell count.
Liver - An organ in your body that performs many complex functions. These include processes related to digestion, production of certain proteins, and elimination of many of the body’s waste products.
Local anesthetic - A medication given by injection into a part of your body to prevent pain in the area without putting you to sleep.
Long-term survivor –A person who is 5 years from the last sign of disease and at least 2 years off therapy.
Low microbial diet - A diet designed to minimize bacteria, viruses, yeast, and molds in food and beverages.
Lubricant - An oily or slippery substance.
Lumbar puncture (LP)/spinal tap - A procedure in which a thin needle is placed in your spinal canal. It is done to remove a small amount of spinal fluid or to give medication through the central nervous system.
Lumen - A tube that forms part of a catheter. Many catheters exit the body and separate into several lumens.
Lymph nodes/glands - An important part of your body in the defense against infections.
Lymphatic system - The tissues and organs that make and store lymphocytes (cells that fight infection) and the channels that carry the lymph fluid. It includes the lymph nodes, spleen, thymus, and bone marrow. The lymphatic system is an important part of your body’s immune system. Invasive cancers sometimes enter your lymphatic vessels (channels) and spread to your lymph nodes.
Lymphocytes - A type of white blood cell that helps your body fight infection. There are 3 main types of lymphocytes: (1) T cells that help fight infections such as viruses and fungi; (2) B cells that make proteins called antibodies that help fight infection. For example, if you receive a vaccination against tetanus, you make a protein (antibody) against tetanus; (3) natural killer cells that help fight viruses and other germs. They are sometimes given to help fight cancer.
Lymphocytosis (limf-o-sigh-toe-sis) - Having too many lymphocytes.
Lymphoma (lim-foam-uh) - Cancer of the lymphatic system, a network of thin vessels and nodes throughout the body. Lymphoma involves a type of white blood cell called a lymphocyte. The 2 main types of lymphoma are Hodgkin’s disease and non-Hodgkin’s lymphoma. The treatment methods for these 2 types of lymphomas are very different.
Magnetic resonance imaging (MRI) - A method of taking pictures of the inside of the body. Instead of using x-rays, MRI uses a powerful magnet and transmits radio waves through the body. The images appear on a computer screen, as well as on film. Like x-rays, the procedure is painless. However, you may find it uncomfortable to be inside the MRI machine.
Malignant tumor (muh-lig-nant) - A mass of cancer cells that may invade surrounding tissues or spread to distant areas of the body.
Metabolism - A general term for the many chemical processes needed for your body to live.
Metastasis (meh-tas-teh-sis) - The spread of cancer cells to distant areas of the body by way of the lymph system or bloodstream.
Microliter - A unit of measure. One millionth of a liter.
Microorganism - A general name for any small living organism, such as bacteria, viruses, and fungi.
Milliliter (mL) - A unit of measure. One thousandths of a liter. There are 30 mL in 1 ounce, 15 mL in 1 tablespoon, and 5 mL in 1 teaspoon.
Mobilization - Taking medication to stimulate the growth of stem cells and move them into the bloodstream.
Monoclonal antibodies - Antibodies made in a laboratory to target substances called antigens. They can be attached to chemotherapy medications or radioactive substances. Monoclonal antibodies are being studied to see if they can seek out antigens unique to cancer cells and deliver treatment directly to the cancer. This would kill the cancer cells without harming healthy tissue. Monoclonal antibodies are also used in other ways, for example, to help find and classify cancer cells.
Mozobil® - A brand of plerixafor. Plerixafor is a medication used together with granulocyte colony-stimulating factor (GCSF) to help move stem cells from the bone marrow to the blood.
Mucositis - Inflammation of the mucous membrane (inside the mouth). It can cause painful mouth sores.
Mucous membrane - A lining of the internal surface of the body that produces mucus.
Myeloma - Cancer of blood plasma cells, a type of white blood cell.
Narcotic - A medication that relieves pain and can make you sleepy.
Nephrologist (nef-rol-o-jist) - A doctor who specializes in diseases of the kidneys.
Neupogen® - A brand of granulocyte colony-stimulating factor (GCSF)—a medication that stimulates the production of neutrophils (a type of white blood cell). Also called filgrastim.
Neurology - The branch of medical science that deals with the nervous system.
Neutropenia - A condition in which there is a lower than normal number of neutrophils (a type of white blood cell) in the body. While you are neutropenic, you will need to take precautions to prevent infection.
Neutrophils (new-trow-fils) - White blood cells that fight bacterial infection.
Non-Hodgkin’s lymphoma - Cancer of the lymphatic system. The difference between non-Hodgkin’s lymphoma and Hodgkin’s lymphoma is a type of cell called the Reed-Sternberg cell. This cell is only present in Hodgkin’s lymphoma. The treatment methods for Hodgkin’s and non-Hodgkin’s lymphomas are very different.
NPO - Abbreviation for “nothing by mouth.”
Nuclear medicine scan - A method for finding diseases of internal organs, such as the brain, liver, or bone. Small amounts of a radioactive substance (isotope) are injected into the bloodstream. The isotope collects in certain organs. A special camera is used to create an image of the organ and detect areas of disease.
Nurse practitioner (NP) - A registered nurse with a master’s or doctoral degree. Licensed nurse practitioners diagnose and manage illness and disease and can prescribe medication. They work closely with your doctor.
Oncologist (on-call-o-jist) - A doctor with special training in the diagnosis and treatment of cancer.
Oncology (on-call-o-jee) - The branch of medicine concerned with the diagnosis and treatment of cancer.
Ophthalmologist (of-thuh-mal-o-jist) - A medical doctor who specializes in diseases of the eye.
Orally - By mouth; e.g., a medication to be taken orally is one that is swallowed.
Organ - Several tissues grouped together to perform one or more functions in the body.
Orthopedic surgeon (or-tho-pe-dik) - A surgeon who specializes in diseases and injuries of the bones.
Osteoporosis - Brittle bones due to the loss of calcium.
Outpatient - A patient who visits a healthcare facility for diagnosis or treatment without spending the night. Sometimes called a day patient.
Packed red blood cell transfusion (PRBC) - A transfusion of red blood cells without the serum.
Palate - The roof of the mouth.
Pancreas - A large gland in the upper part of your abdomen. It secretes enzymes (chemicals) into your intestines for the digestion of food. It makes insulin, which is secreted into your bloodstream.
Pancreatitis - Inflammation (swelling) of your pancreas.
Pancytopenia - The decrease of all blood cells (red, white, and platelets).
Parotid gland - Salivary glands located at the side of your face in front of each ear. These glands become large if you have mumps. Total body irradiation may cause painful swelling of these glands, which is temporary.
Pathology - The branch of medicine involved in making diagnoses from the examination of tissues.
Pedicure - A beauty treatment in which toenails are trimmed/shaped and often polished or painted.
PET scan - A scan used to look at the organs and the way they function in the body. A small amount of radioactive sugar is injected into a vein, and a scanner is used to make detailed, computerized pictures of areas inside the body where the glucose is used. Because cancer cells often use more glucose than normal cells, the pictures can be used to find cancer cells in the body. Also called a positron emission tomography scan.
Petechiae - Tiny, localized hemorrhages from small blood vessels just below the surface of the skin. They are often caused by a low platelet count. They clear up as the platelet count increases.
pH - A symbol that means acidity or alkalinity. A solution of pH 7 is neutral. Below 7 is acidic and above 7 is alkaline. The urine is usually slightly acidic, with a pH of 5.3.
Pharyngitis - Inflammation of the throat; sore throat.
Pharynx - Your throat.
Pheresis/apheresis - A special method of collecting blood when only one part of the blood is needed.
Phlebitis - Inflammation of a vein. Signs include pain, swelling, and tenderness in an area. If a superficial vein is involved, the phlebitis can be felt as a cord-like thickening along the vein.
Physician assistant (PA) - A licensed medical professional who practices medicine under physician supervision. Physician assistants diagnose and manage illness and prescribe medications.
Plasma - The liquid portion of the blood in which blood cells are suspended. It contains many proteins and minerals necessary for normal body function.
Platelet - A part of the blood that helps repair (plug) holes in blood vessels after an injury. If you have a low platelet count, you are at risk for bleeding. Chemotherapy can cause a drop in the platelet count. This is called thrombocytopenia.
Plerixafor - A medication used together with granulocyte colony-stimulating factor (GCSF) to move stem cells from the bone marrow to the bloodstream.
Pneumonia - Infection of the lung.
Polys (neutrophils or granulocytes) - The group of white cells that helps to resist bacterial infection. A “poly” count of less than 1,000 means that you have an increased risk of infection.
Postop - After surgery.
Potassium - An element found normally in your blood; it is important for heart and muscle function.
Preop - Before surgery.
Prognosis (prog-no-sis) - A prediction of the course of disease; the outlook for a cure. A prognosis is based on the average result in many cases. It may not accurately predict your outcome, since the course can vary from patient to patient.
Prophylactic - Treatment designed to prevent a disease or a complication that has not yet become clear.
Protocol (pro-teh-call) - A formal outline or plan, such as a description of what treatments you will receive and exactly when each should be given.
Pulmonary - Concerns or affects your lungs.
Pulmonary fibrosis - Thickened tissue in your lungs that causes coughing, difficulty breathing, and x-ray changes.
Pulmonary function tests (PFTs) - Special tests that are designed to evaluate the function of your lungs.
Radiation oncologist - A doctor who specializes in using radiation to treat cancer.
Radiation recall - Inflammation (swelling) of exposed skin and organs in areas of radiation therapy.
Radiation therapy - Treatment with high-energy x-rays to kill cancer cells or shrink tumors. The radiation can come from outside of the body (external radiation) or from radioactive materials placed directly in the tumor (internal or implant radiation). Radiation therapy can be used to reduce the size of a tumor before surgery or to destroy any remaining cancer cells after surgery. Or, in some cases, it may be the main treatment.
Rectal - By or having to do with the rectum. The rectum is the last several inches of your large intestine closest to your anus.
Rectum - The last part of your large intestine.
Red blood cell - A cell that carries oxygen to all parts of the body. Also called erythrocyte and RBC.
Regression - The reduction of cancer, usually as the result of therapy. It is shown by the decreased size of the tumor or tumors.
Reinduction - To start over, i.e., a new treatment or protocol.
Rejection - The body’s inability to accept transplanted stem cells.
Relapse - Return of cancer after a disease-free period.
Remission - When the signs and symptoms of cancer fully or partly disappear. The period during which a disease is under control. A remission may not be a cure.
Renal - Pertaining to your kidneys.
Resident - A physician in the second or third year of training after completing medical school.
Resistance - Your ability to fight off and avoid disease.
Respiration - The process of breathing.
Respiratory tract - All parts of your body used for breathing.
Scan - A study using either x-rays or radioactive isotopes to create images of internal body organs.
Sedative - A medication given to make you drowsy or sleepy.
Sedimentation rate (SED) - The change in speed of the red blood cell count expressed in millimeters per hour. A SED rate that is over 25 or is increasing may indicate infection.
Septicemia/sepsis - A very serious bacterial or fungal blood infection. It usually spreads from another site of infection such as skin, bowel, or urinary tract. It can cause high fever, shaking chills, and heavy sweating. It is more likely to occur in patients with a very low white blood cell count.
Shingles (herpes zoster) - A viral infection of the nerve endings in the skin. It can cause blisters, crusting, and severe pain along the nerve. It is the same virus that causes chicken pox. Children who have not had chicken pox may get it from contact with someone who has shingles.
Simulation – A procedure that is done to plan radiation therapy; measurements and x-rays are taken and actual radiation treatment fields are determined.
Sinuses - Hollow spaces in the bones of your head.
Spinal cord - The cord or nerve tissue that runs through the center of your spinal column. It connects your brain to other parts of your body.
Spleen - An organ that filters your blood. It removes debris and old or dying cells from circulation. It also removes bacteria from the blood during the early stages of severe infection. It often becomes enlarged in those with leukemia and certain other diseases.
Stem cells - Primitive blood-forming cells in the bone marrow that give rise to white blood cells, red blood cells, and platelets.
Sternum - The long, flat bone that forms the center front of your chest wall. Your breastbone is attached to the collarbone and your first 7 ribs. Also called the breastbone.
Stomatitis - Mouth sores; this can be a side effect of some kinds of chemotherapy.
Suppository (rectal or vaginal) - A medication prepared for insertion into the anus or vagina, where it is generally absorbed into the bloodstream.
Susceptible - Tendency to develop a disease if exposed to it; not having immunity.
Symptom - A change or sign in the body or its function that indicates disease or infection.
T cell-depleted blood stem cell transplant - A type of transplant in which T cells are removed in a laboratory after donor stem cells are obtained. This process reduces the likelihood of graft versus host disease that is caused by the donor’s
T cell or T lymphocyte - A type of white blood cell or lymphocyte that plays a major role in the body’s defense against viral and fungal infections.
Testicular mass - A swelling of the testis or testicle, the male reproductive gland.
Thrombocytopenia (throm-bo-sigh-toe-peen-e-uh) - A decrease in the number of platelets in your blood.
Thrombophlebitis - An inflammation of a vein.
Tinnitus - Ringing in your ears.
Tissue - A collection of cells similar in structure and function.
Tissue typing (human leukocyte antigen, HLA) - A special test of white blood cells to check the genetic match between a donor and the patient.
Total body irradiation (TBI) - Radiation treatments given to the whole body.
Total lymphoid irradiation (TLI) - Radiation treatments given to the parts of the body where most of the lymphatic system is located.
Toxicity - A word used to describe the side effects caused by a medication.
Toxins - Poisonous substances; may be produced by germs.
Trachea - Your windpipe.
Transfusion - A procedure in which a person is given an infusion of whole blood or parts of blood, such as red blood cells or platelets. The blood may be donated by another person or it may have been taken from the patient earlier and stored until needed. Also called a blood transfusion.
Transfusion reaction - An allergic response to blood products. Symptoms include hives, chills, or headaches ranging from mild to severe.
Tumor - An abnormal lump or mass of tissue. Tumors can be benign (not cancerous) or malignant (cancerous).
Ulcer - A wearing away of normal tissues. It can be from corrosive chemicals (e.g., acids), infection, impaired circulation, or cancer. It can cause bleeding.
Ultrasound - An imaging method that uses sound waves to outline a part of your body. It can be done to any part of the body. A tumor or infection can be monitored this way.
Unpasteurized - Relating to perishable food that has not been pasteurized (heat-treated to kill potentially harmful microbes).
Urinalysis - The process by which your urine is examined for various factors.
Urinary tract - The organs that have to do with the production and elimination of urine, i.e., kidneys, bladder, ureters, and urethra.
Varicella - Chicken pox, an infection caused by a virus. Children with cancer may have a problem with this infection if they have not had it before.
Vein - A blood vessel carrying blood from your tissues towards your heart and lungs. Veins are used to draw blood samples and administer IV liquids because blood in veins is not under pressure.
Veno-occlusive disease (VOD) - A disease caused by a blockage in the flow of blood in the liver. It results in weight gain, an enlarged liver, and yellowing of the skin. It can cause mild, moderate, or severe liver damage or death.
Vertigo - Dizziness, especially the feeling that your surroundings are swirling.
Virus - A small germ that may cause infection, such as measles, mumps, chicken pox, and the common cold.
White blood cells (WBC) – The cells in your blood that are most important in fighting infection. Examples are neutrophils, or “polys”, and lymphocytes, or “lymphs.”
X-ray - A form of radiation that can be used at low levels to produce an image of the body on film. It can be used at high levels to destroy cancer cells.
Zoster - varicella zoster - See shingles.Back to top
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