Welcome & Overview
We would like to welcome you to the Adult Stem Cell Transplant program at Memorial Sloan Kettering (MSK). We know that this is a challenging and potentially overwhelming time for you and your family and we want to assure you that we are here to help you throughout this process.
This guide is designed to help you and your family understand what to expect throughout your transplant journey. The information in this guide will complement, but is not meant to replace, the information that your healthcare team will review with you in person. While we want to inform you of some of the challenges that may lie ahead over the course of your recovery, we cannot predict what will happen in any given case. We need to inform you of potential issues, but this does not mean that you will experience all or any of these issues. Therefore, we ask that you not compare yourself to other people you may know or have heard of that have had a stem cell transplant. Each patient is unique.
Allogeneic stem cell transplants have been done for many decades, with significant improvements over that time. However, it remains a complex procedure that requires a commitment not only on the part of the healthcare team, but just as importantly, on the part of the patient and their family/caregiver. Preparing for your hospital admission, as well as the time you spend in the hospital, are only the first parts of your journey. All allogeneic transplant patients are required to stay within 1 hour of MSK until it is about 3 months from the day of the transplant. If you live a distance farther than 1 hour from the hospital, we can make arrangements for local housing. While overall recovery time varies from person to person, you should plan on allowing about 1 year for full recovery. All of these points will all be discussed in more detail in this guide.
There are many phases as you go through this process and we are fortunate to have a large, integrated healthcare team that will care for you as you go through each phase. We understand that patients can experience many emotional and psychological changes during the transplant process. Our healthcare team includes many professionals, such as social workers, chaplains, psychiatrists, and members of our integrative medicine department, that are available to support and help you and your family cope with these changes.
Throughout your transplant journey, it’s very important that you communicate clearly with your healthcare team and your caregiver about how you are feeling. If anything is bothering you, even if it seems minor, tell a member of your healthcare team. This is true for how you are feeling physically, as well as how you are feeling emotionally. It is very important not to let things “brew,” otherwise minor issues can become more of a problem. The more information you communicate to your healthcare team, the more they’ll be able to 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 healthcare team:
- If you are an outpatient, call your doctor’s office Monday to Friday,
9:00 am to 5:00 pm. Your doctor’s office assistant can give your message to the appropriate person (i.e., doctor, nurse, clinical nurse coordinator, social worker). If you have an urgent issue and it is after office hours, you should still call your doctor’s office number. The call will be answered by our hospital answering service, and you should ask for the hematology fellow on call.
- Use the MyMSK patient portal system. You can use MyMSK to ask questions about your appointment schedule, request a prescription refill, or request patient education information. It should never be used to communicate any symptoms to your healthcare team. We will give you more information about this system at your initial consult visit.
- While you are an inpatient, your healthcare team will see you at least once a day, and you will be seeing your primary nurse throughout the day. Talk with them about any issues during this time.
You should read this entire guide at least once, as well as the additional materials included at the back of the guide. We have tried to make this guide inclusive, so there is a lot of information to read and understand. You may find it easier to read through it in sections rather than trying to read through 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 do not hesitate to 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 we need you to understand. With this in mind, we’ve included a glossary of useful terms at the back of this guide.
We are always trying to improve the information we give to our patients, their families, and their friends. After you’ve read this guide, you may think of ways it could be improved (maybe there’s something that was missing or wasn’t completely clear). Please e-mail your suggestions to us at email@example.com. We will incorporate your feedback into the next version of this guide.
What is bone marrow? What are stem cells?
Bone marrow is a substance found in the spaces in the center of the larger bones in your body—your hip, breastbone, and pelvis.
Bone marrow contains a large number of hematopoietic stem cells (referred to as stem cells). Stem cells are immature cells that produce all of the blood cells in your body—the white blood cells that fight infection, red blood cells that carry oxygen, and platelets that help control bleeding. Your stem cells are constantly dividing and changing into these different types of blood cells in your body, replacing older blood cells. A very small number of stem cells circulate in your bloodstream.
You’ll hear your transplant referred to as a “bone marrow transplant” or a “stem cell transplant.” Either term is correct and refers to whether the stem cells are taken from the bone marrow, or if they are collected from the blood. This will be explained further on the next page and when we discuss the role of your donor.
An allogeneic stem cell transplant is being recommended for you because your doctors feel that a transplant is the best treatment for your specific disease.
When you have an allogeneic stem cell transplant, stem cells are harvested (collected) from a donor. “Allogeneic” means that the stem cells come from someone else. The 3 general sources of stem cells that can be used in an allogeneic stem cell transplant are bone marrow stem cells, peripheral blood stem cells, and umbilical cord blood stem cells.
Bone marrow stem cells can be collected from a donor’s bone marrow through a procedure called bone marrow harvesting. The procedure is done in the operating room while the donor is asleep. The donor usually goes home the same day of the procedure.
Peripheral blood stem cells are collected from a donor’s bloodstream. To increase the amount of stem cells in the bloodstream, the donor will receive injections of a medication that stimulates the body to make more stem cells than usual. The stem cells escape from the bone marrow into the bloodstream, where they can be collected easily.
Umbilical cord blood stem cells are collected from the blood of the umbilical cord and placenta of a newborn baby at the time the baby is delivered. They are taken to a cord blood bank and stored frozen until needed for a transplant.
A test called “tissue typing” is done to determine who is the most appropriate donor for you. For a hematopoietic stem cell transplant, the tissue typing is based on your human leukocyte antigens (HLA). These are markers that are found on the surface of your white blood cells.
A person with a close HLA match is most often a brother or sister. Family members can have a test to see what tissue type they have. There is a 25% chance that a sibling will be a match. Your doctor will determine if someone is a close enough match to be your donor.
People who aren’t related to each other can have a close match. If you don’t have a family member with a matching tissue type, we have a team of search coordinators who will look for an unrelated adult volunteer donor or umbilical cord blood units. The National Marrow Donor Program® has millions of people registered who have been typed for this purpose. However, searching for a donor can take weeks or even months to complete. Sometimes, umbilical cord blood can be used if the transplant is urgent, since it is more readily available. If you will need stem cells from someone who is not related to you, your doctor will discuss this with you.
Before your transplant, you will receive treatment to prepare your body for the transplant, even if your disease is in remission. This is called conditioning and will consist of chemotherapy, radiation therapy, or both. The treatment will aim to:
- Kill any remaining cancer cells in your body.
- Make room in the marrow spaces for the new stem cells.
- Suppress your immune system in order for you to be able to accept the donor’s stem cells.
Myeloablative and nonmyeloablative transplants
There are 2 types of conditioning before an allogeneic transplant. One is called myeloablative. In this approach, you will receive high doses of chemotherapy with or without radiation. These treatments aim to kill your cancer but will also kill (myeloablate) all of the stem cells in your bone marrow. The donor stem cells will then replace the ones killed by the treatment. This form of treatment is very intense and may not be suitable for all patients.
A nonmyeloablative transplant involves a less intense treatment regimen. Lower doses of chemotherapy are given with or without lower doses of radiation. Medications are also given to suppress the immune system. The goal of this approach is to suppress your immune system enough to allow the donor stem cells to take over and produce a new immune system that will fight the cancer.
Your doctor will consider many factors when choosing which type of transplant is best for you. These include your disease, other treatments you have received, and your overall health. Your doctor will explain these factors in detail with you.
When it is time for your transplant, the donor’s stem cells will be infused into your body through a central venous catheter (CVC). This is a thin tube inserted into your upper chest. The stem cells may be transfused from a bag, like a blood transfusion, or pushed from a large syringe into your CVC. This will take place in your hospital room.
Almost immediately after the stem cells are infused into your body, they will travel through your bloodstream to your bone marrow. They will begin to divide and create healthy new blood cells. Engraftment is when your body accepts the transplant and your blood cell counts start to recover.
The time to engraftment usually takes about 10 days but can be longer, depending on the source of your stem cells. Platelets and red blood cells usually take a little longer to recover than white blood cells.
While you are waiting for engraftment, you may need to have blood and platelet transfusions. You’ll be given injections of growth factor, which is a medication that will speed up the production of white blood cells in your body.
You will be very vulnerable to infection during this time. You will need to take precautions, including avoiding sources of infection, washing your hands regularly, and eating a low-microbial diet. When you are admitted to the hospital, 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 if we suspect you have an infection.Back to top
Preparing for Your Transplant
At your initial consultation visit, you’ll meet with your doctor and other members of your healthcare 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 will be presented at a weekly conference with other transplant doctors to ensure that there is agreement on what the best plan is for your specific situation.
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 during this phase:
Learn about your transplant — The information your healthcare 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 family to participate in a virtual program for allogeneic stem cell transplant patients. This is an online educational program to prepare you for your transplant. Ask your clinical nurse coordinator for details, or go to: www.mskcc.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. Give your caregiver a copy of this guide and ask him or her to read it at least once.
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 healthcare 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.
Think about accommodations — As we mentioned earlier, you will need to stay somewhere that is located within 1 hour of MSK for the first 100 days after your transplant. Your social worker can help you arrange this, if needed.
Make decisions about your fertility — If fertility (the ability to have children naturally) is a concern for you, speak with your healthcare 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.
Men can preserve their fertility by sperm banking. This involves collecting, freezing, and storing sperm. Generally, 3 collections are needed. There are sperm banks throughout the U.S. where you can do this. For more information, ask your nurse for the resources below, or you can find them on our website, www.mskcc.org/pe.
Cancer and Fertility: Information for Men
There are options for women to preserve their fertility. This involves taking hormones for about 10-14 days and collecting eggs. The eggs may be fertilized with sperm to create embryos. The embryos or eggs are then frozen and stored. Because of the extra time this takes, you must talk with your doctor about this as soon as possible. For more information, ask your nurse for the resources below, or you can find them on our website, www.mskcc.org/pe.
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 — The chemotherapy that kills cancer cells also kills the cells that make your hair. Most people will lose their hair during their transplant. Think about whether you’d like to cut your hair. Visit a wig store if you decide to wear a wig.
Have your pretransplant evaluation — You’ll undergo a series of medical tests. Your clinical nurse coordinator will review which tests are needed and your doctor’s office assistant will work with you to schedule these tests at a time that is convenient for you (as best as possible).
Meet with a dietitian — If you will have particular nutritional needs, you will meet with a dietitian to 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 professionals will care for you throughout your treatment. You will meet many members of your healthcare team as you progress on your transplant journey. Some members, such as your doctor’s office assistant, laboratory staff, or our service coordinator, you may not have an opportunity to meet, but know that they are all working on your behalf. Here is a list of the team members and their roles.
An attending doctor will be in charge of your care throughout your treatment. Even though one 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.
Nursing staff will be working with you when you are seen at outpatient visits, as well as while you are in the hospital. They are registered nurses specially trained in the care of stem cell transplant patients. Each outpatient nurse works with 1 or 2 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. When you are admitted, you will have a team of primary nurses that will care for you during your hospital stay. The inpatient 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 patients 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 patients 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 transplant patients 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 transplant patients. 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 patients in and out of the clinic. They ensure that patients have all of their necessary tests, scans, and treatments the medical team orders either completed or scheduled. Session assistants also manage patients’ medical records and coordinate their future appointments.
An unrelated donor search coordinator works with staff at the National Marrow Donor Program to find a donor for patients who do not have a suitable donor in their family. He or she updates your doctor frequently with the results of the search.
A research study assistant (RSA) works with your healthcare team and will speak with you and explain some of the research studies at MSK that you may be able to participate in. These studies do not include anything that is related to your particular treatment, and mostly concern collecting samples or data.
Patient representatives are liaisons between patients and families and the hospital staff. They are here to protect patients’ rights and help explain hospital policies and procedures to patients and their families. Patient representatives can help patients with any concerns about their care and help facilitate communication to ensure a better doctor/patient relationship.
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 see you in the early part of your hospitalization and will work with you to help you maintain your strength and stamina during your recovery.
A room service associate will orient you to room service. He or she will make sure that you receive the appropriate menus, as well as deliver your meals.
A case manager will see you during your hospital admission, give required updates to your insurance company, and help you arrange home care as needed.
An important step in preparing for your transplant is choosing your caregiver, who will be an important part of your healthcare team. This person is usually a family member or a close friend. Your caregiver will be responsible for some of the medical, practical, and emotional support you need during your transplant. This person needs to be available 24 hours a day, 7 days a week once you are discharged.
Some of your caregiver’s responsibilities will include:
- Noticing any changes in your condition.
- Telling your healthcare team about any new symptoms you may have or changes in your condition.
- Calling for medical help in an emergency.
- Dealing with financial and insurance issues.
- 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 close attention to your moods and feelings.
- Communicating with you and listening to you.
- Understanding your needs and your decisions.
If there isn’t 1 single person who can act as your caregiver, then it may be possible for you to have different caregivers scheduled during different times. It is best to limit the number of caregivers to 2 0r 3 individuals, if possible.
It is important for your caregiver to maintain a positive attitude, calm demeanor, and flexible approach, while also 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 somebody 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.
Resources for caregivers
Caregivers can experience financial, physical, emotional, and spiritual distress. Resources and support are available to help manage the multiple responsibilities that come with caring for a transplant patient. 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 at the back of this guide.
At MSK, the Caregivers Clinic provides support specifically for caregivers who are having difficulty coping with the demands of being a caregiver. For more information, please call Dr. Allison Applebaum at 646-888-0020 or go to: www.mskcc.org/cancer-care/doctor/allison-applebaum.
Separation from your children will be difficult for you and your family. We know from past experience that patients with children experience a range of feelings and reactions related to this separation.
We strongly recommend that you talk to one of our social workers about being separated from your children. Have your caregiver tell any member of your healthcare team that you’d like to speak with a social worker and they will make sure to arrange it. They will listen to your concerns and help you develop a plan to maintain strong ties to your children while you are undergoing treatment.
Here are some things that other patients have done to remain in contact with their children during their transplant.
- Use a computer or tablet and programs like Skype, Google Talk/Hangouts, or FaceTime to talk to your children regularly. 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. Craft supplies can be provided to you by the Patient Recreation Center. Ask a member of your healthcare team to arrange for the Patient Recreation Center to bring supplies to you.
- Use your cell phone or a tape recorder to make an audio recording of yourself as you read 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.
- Ask your children to decorate your hospital room with pictures; your caregiver can bring them to you and you can show them hanging on the wall over Skype.
- Give your child 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 to your child about them over Skype or on the phone.
We understand that nothing will replace physical contact between you and your children, but we strongly encourage you to use all available technology to maintain a strong bond with them while you are away.
For more assistance related to maintaining your relationship with your children, contact your social worker.
Before you become a transplant candidate, your overall physical condition needs to be evaluated. You will need to make several trips to MSK to undergo 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 your kidney and liver function and to assess your blood counts and hemoglobin level. Your past exposure to certain viruses is also checked.
- Urine test — This is done to determine if there are any abnormalities in your urine.
- Electrocardiogram (EKG) and Echocardiogram (echo) — This is done to give your healthcare team information about your heart.
- Pulmonary function tests (PFTs) — These are breathing tests that measure your lung function.
- Computed tomography (CT) scan — This is an x-ray that provides images of soft tissue and bone. Some scans use contrast dye that you drink or have injected into your body. Tell your doctor if you have a known allergy to contrast dye, seafood, or iodine. If you have an allergy, you may need to be given medications to prevent a reaction to the dye before your scan.
- Positron emission tomography (PET) scan — This is a scan that is used to look at certain types of cancer, as well as your organs and how they function in your body.
- 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 him or her to provide a note 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.
- 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 lets us check for abnormal cells in your cerebrospinal fluid (CSF). This is the fluid that surrounds your brain and spinal cord. A small needle will be inserted through your back and a small amount of CSF will be collected. A lumbar puncture is only done for certain types of leukemia and lymphoma. Sometimes, chemotherapy is injected into the spinal fluid to prevent the cancer from spreading there or to treat it if it is already there.
- Skeletal survey — This involves taking multiple x-rays of the major bones in your body to check for any signs of disease. It is generally done for patients with multiple myeloma. It can take a few hours to complete.
- Consultation with a radiation oncologist — If you are having radiation therapy as part of your conditioning, you will meet with your radiation oncologist to go over your treatment plan. You may also have a CT scan, PET scan, or both, at this visit to plan your treatment. You will also have a treatment planning session called a simulation. During this session, several x-rays are taken along with measurements of your chest. These are used to make lead shields. Your lungs are very sensitive to radiation and the shields will be used to protect them during some of the treatments.
These tests are usually done in the 30 days before your transplant (Day −30 onwards), but sometimes the pretransplant evaluation can take longer. Your clinical nurse coordinator 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.
Your doctor or nurse will explain any other tests that you may need.
At the time you are having your pretransplant evaluation, your donor will be going through the screening process. If your donor is related to you, they will be screened at MSK. If your donor is unrelated, they will be screened at the local donor center.
In an allogeneic transplant, your donor’s stem cells are first harvested (“collected”) from his or her body.
Mobilization is the process of increasing the number of stem cells produced by the bone marrow and released into the bloodstream.
Normally, stem cells live in the bone marrow, although a small amount circulates in the bloodstream. To increase the amount of stem cells in your donor’s bloodstream, he or she will be given injections of a medication called filgrastim (Neupogen®), which is a granulocyte colony-stimulating factor (GCSF). GCSF stimulates the body to make more stem cells than usual and releases the stem cells into the bloodstream. This process is called mobilization.
In most cases, filgrastim injections are self-administered, meaning that your donor will be taught how to inject him or herself with the medication at home. He or she will be given filgrastim in prefilled syringes, which will be kept in the refrigerator. Your donor will give him or herself injections daily for 5 to 6 days.
Peripheral blood stem cell (PBSC) harvesting is the process of collecting and separating whole blood into its major components (red blood cells, white blood cells, platelets, and plasma) then removing stem cells from the other white blood cells.
In general, the donor’s stem cells are collected 1 to 2 days before the transplant. Occasionally, donor stem cells are collected at an earlier time and frozen until needed.
For a related donor, the harvesting procedure is done in the Blood Donor Room at MSK. Your donor will typically have 2 harvesting sessions for 2 days in a row. Each session will last 3 to 4 hours.
During the procedure, your donor will be lying in a bed or sitting in a reclining chair. He or she will be connected to a machine either by an intravenous (IV) needle in each arm, or by a catheter that has been inserted into his or her chest (if his or her arm veins are too small). Blood will be withdrawn through the needles in their arms or the catheter and circulated through a machine that collects the stem cells. The rest of the blood will be returned to your donor through the needles or catheter. Once collected, your donor’s cells will be brought to our cell processing lab and prepared for you to receive them the following day.
In certain cases, stem cells may be collected from the donor’s bone marrow rather than peripheral blood. This is called bone marrow harvesting. In this situation, mobilization is not needed.
Bone marrow harvesting is done in the operating room while the donor is under general anesthesia. Usually, the bone marrow is taken from the back hip bones. This procedure is done in 1 day, and in most cases, the donor goes home that same day. Although the donor does not feel anything during the procedure, he or she may have some soreness for a few days following the harvest.
When the date of your transplant has been determined and your pretransplant evaluation has been done, 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 specific treatment plan with you.
- Your doctor will go over the consent forms and you will sign consent for your transplant (if this has not been done at a previous visit).
- You will meet with your transplant 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), as 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 Transfusion, 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 have any of the following:
- Signs of a cold, such as:
- Runny nose
- Temperature of 100.4° or higher
- Open wound
- Any other new problem, even if it seems minor
Your doctor will decide whether your admission for SCT should be delayed. It could be very dangerous to start your chemotherapy for transplant while you have an infection, even just a cold. This is because your immune system will not be able to fight the infection.
You are welcome to bring the following items with you to the hospital on your admission day:
- Pajamas, sweat pants, shorts
- Button down or zipper shirts
- Sneakers, socks with traction, or both
- Hat or scarf
- Blanket and pillow from home (brightly colored to distinguish it from hospital linens)
- Photos, posters, or other reminders of home
- Cell phone and charger
- Baby wipes
- Puzzles, books, magazines
- Notebook and pens and pencils
- A little bit of money
- Radio, iPod, or CD player
- Laptop or tablet (e.g., iPad)
Do not bring the following items with you to the hospital on your admission day:
- Your medications (both prescription and over-the-counter)
- Things that will clutter up your room
- Flowers or plants
What to Expect While You Are in the Hospital
Having your central venous catheter inserted
For your transplant, you will need to have a central venous catheter (CVC) inserted into your upper chest wall. A CVC is a tube that is inserted into a large vein in the upper chest area. On the outside of your body, the catheter divides into 2 or 3 smaller tubes called lumens.
A CVC allows your healthcare team to transfuse your stem cells, draw your blood, and give you fluids, electrolytes, blood transfusions, chemotherapy, and other medications without having to keep sticking you with a needle. Having a CVC will make your treatment much more comfortable. Most of the time, your CVC is taken out at discharge.
You will have your CVC placed in MSK’s Interventional Radiology department at the main hospital. This procedure is done under monitored sedation. You will most likely have your CVC placed on the day you are admitted to the hospital. Occasionally, a CVC may need to be inserted a few days before hospital admission. Your transplant nurse coordinator will discuss the details of having your CVC placed. For more information, please read the resource Instructions for Interventional Radiology Procedures, located at the back of this guide.
After your procedure
After your CVC has been inserted, you will be monitored until you are fully awake. You will then be taken to the inpatient stem cell transplant unit, if it is being placed on the day of your admission. The inpatient nursing staff will care for your CVC while you are in the hospital.
If your CVC is inserted a few days before you are admitted to the hospital, you will be discharged once you are fully awake. You must have a caregiver accompany you if you are going home after your CVC is placed. In this situation, your nurse will teach you and your caregiver how to change the dressing using sterile technique to keep it free from germs. Your nurse will give you the necessary supplies, but it is unlikely that you would need to change the dressing before your admission.
Keep your CVC secure at all times to avoid pulling it. You can tape the lumens of your CVC to your skin, tuck them into a bra if you wear one, or secure them to your clothing. Ask your nurse about the best way to secure your CVC. You can find detailed instructions on how to care for your CVC in the resource Caring for Your Central Venous Catheter, which is included at the back of this guide.
There are two transplant units: M8 and M14. You will be followed by the same healthcare team whichever floor you are on. Nursing staff on each unit are specially trained in the care of transplant patients, and all the same guidelines are followed. Sometimes, you may be admitted to one unit, but later be moved to our other transplant floor, if patient needs require this. We try to avoid moving patients as much possible, but sometimes it is necessary.
Upon admission, your inpatient healthcare team will take a complete medical history, review your current medications, and do a physical exam. Your inpatient healthcare team is made up of an attending and a combination of a fellow, NP/PA, primary nurse, and pharmacy specialist. Bring 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. As mentioned earlier, you do not need to bring your medications with you.
Your primary nursing team will care for you throughout your hospital stay. Nurses typically work 12-hour shifts. The shift changes happen at 7:00 am and 7:00 pm every day. During this time, bed-side patient handoff (report) will be performed between your nurses so that the nurse taking over your care will be updated with specific information about your condition.
During your hospital stay
- You will be placed in protective isolation in the hospital to prevent you from getting an infection. Anyone entering your room must perform hand hygiene and wear a mask and gloves. For more information on hand hygiene, see “Visitors” section on page 25 or Hand Hygiene and Preventing Infections at the end of this resource. Sometimes, you may need additional isolation precautions. A card telling your visitors about the type of isolation and what is required will be placed on the door to your room. Even though 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 one 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. The room has a TV with cable channels and Wi-Fi access.
- You will be connected to an IV pole with electronic pumps during most of your hospital stay.
- Your vital signs will be taken every 4 hours, around the clock.
- Your urine will be measured daily during your hospital stay. It is important that we know how much urine you are making.
Before 6:00 am every day, you will be weighed and your blood will be drawn. 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 function, monitor for infections, check the level of chemotherapy or other medications in your blood, and help evaluate your overall condition.
The day you are admitted to the hospital, every Monday, and right before you are discharged, your nurse will take a nasal and rectal swab for testing. This is to see if you have any bacteria that may cause an infection. If you do, your healthcare team will instruct you about additional necessary isolation precautions.
If you are at risk of falls, someone will be available to help you go to the bathroom. Your treatment team will tell you more about how to prevent falls.
- 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 infectious illness.
- All visitors should be able to follow infection control precautions, such as washing their hands, wearing a mask, and reporting symptoms of an illness. We consider age 7 to be a reasonable age to be able to follow these requirements.
- Your caregiver and any visitors must perform hand hygiene before each visitor enters your room using the guidelines 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, be sure to cover all of your hands with it, rubbing them together until they’re dry.
- You must clean your hands using the hand hygiene guidelines described above prior to eating and after using the bathroom.
- 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.
- Visitors and caregivers must use the visitor’s restroom in the hallway and not the restroom in your room. This is to minimize the spread of bacteria in your room.
- Please tell family and friends not to bring or send fresh-cut flowers or live plants to you. They are not allowed in your room.
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 is important to be safe, so ask for help when getting up.
We encourage you to walk around the unit. If your neutrophil count is high enough, you can walk in the hallway before 7:30 am and after 12:00 pm. You must wear a mask and gloves while you are walking around the unit. Some patients will need to wear a gown when walking in the hallway. Your nursing team will tell you what precautions you will need to take. You should not leave the floor for walking or exercise. A physical therapist will evaluate you early during your hospitalization and prescribe an exercise program suitable for you.
Each room has a call bell system that is monitored 24 hours and day, 7 days a week by unit assistants. If you need something, please tell your unit assistant exactly what you need so we can direct the appropriate 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 healthcare team. You will be given a menu and instructions on how to order your meals. Room service will deliver your meals to you.
Generally, all patients are recommended to follow 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. Special meal plans for patients who keep Kosher, have diabetes, or follow other specialty diets can be requested. A dietician is available on both transplant floors for consultations.
You will be expected to shower daily. You will be assisted with or observed during your shower. A patient care technician will be in your room when you are showering. He or she will arrange a time for you to shower.
It is important that you practice good mouth care. Your nurse will go over this with you.Back to top
The 5 Phases of Transplant
While each person’s transplant is different, below is a table that outlines 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 some effects may occur over several phases of your transplant journey.
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 therapy given to prepare you for your transplant. Conditioning is usually a combination of 2 or more chemotherapy medications or chemotherapy and radiation therapy. The particular conditioning you will receive is based on a number of factors and is discussed with you at your outpatient visits prior to admission.
Conditioning starts on a negative-numbered day (e.g., Day -7). Depending on your treatment plan, the number of days of conditioning will vary. Your stem cell transplant always takes place on Day 0. Every day after your transplant is referred to as a positive-numbered day (e.g., Day +1, Day +2, etc).
Day −10 to Day −1
Conditioning (chemotherapy and possible radiation therapy)
Stem cell infusion
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), antinausea medication, and the chemotherapy medication through your catheter.
The radiation therapy given before a transplant is usually total body irradiation (TBI). With TBI, small doses of radiation will be delivered to your whole body. If your transplant doctor recommends radiation as part of your conditioning, you will have a consultation with a radiation oncologist before you are admitted to the hospital. This doctor will explain the process and make certain measurements of your body to be sure the radiation is given safely and effectively. He or she is also responsible for prescribing the appropriate amount of radiation.
These doses are given 1 to 3 times a day and are given over 1 to 4 days. Having radiation therapy is like having an x-ray. The treatment does not hurt.
Each treatment will take 10 to 30 minutes. If you are male and have leukemia or lymphoma, you may have a boost, or an additional radiation treatment to your testes. This is done to destroy cancer cells that may be hidden there.
You may also need a boost to other parts of your body. The treatment depends on the disease you have. Your transplant doctor and radiation oncologist will explain the details of your treatment plan.
Things to remember
- Do not wear any jewelry during your treatments. The metal may change the radiation dose to that area.
- Stop using any creams, lotions, deodorants, or oils (even ChapStick® or lip balm) 2 days before you start radiation therapy. Do not use them at all while you are getting radiation. You can use Aquaphor®, but do not apply it for 4 hours before your treatment.
- Family members can go with you when you have your treatments. They must wait outside the treatment room, but they can see you on a video screen and talk to you.
- You and your clothes will not become radioactive during or after the treatments. You cannot pass the radiation to other people.
Your nurse will tell you more about how the radiation is given and what you will do during the treatments.
Conditioning should kill at least some, if not all, of the cancerous cells in your body and will prepare your bone marrow and immune system to receive your transplant. However, the side effects of these treatments are not to be taken lightly. These side effects may include the loss of your ability to fight infections, infertility, hair loss, fatigue, nausea and vomiting, diarrhea, mouth sores, or mouth tenderness.
Your healthcare team will help you 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 healthcare team.
Low white blood cell count (neutropenia)
Your treatment will damage your ability to fight infections and heal. It’s important that you understand why this happens, how to watch for danger signs, and how to avoid infections and injuries.
One side effect of treatment is called neutropenia. Neutropenia is a condition in which you have a lower than normal number of neutrophils (a type of white blood cell) in your bloodstream. Neutrophils play a crucial role in your immune system—they are one of the first types of cells that travel to the site of an infection. Once they reach the site of an infection, they ingest and fight potentially harmful germs.
Because your treatment will kill your stem cells, you will temporarily lose your ability to make new neutrophils. Since your neutrophils are not being replaced, the number of neutrophils in your bloodstream will drop to a very low level, leaving you at high risk of infection. Your transplant team will watch for any signs of infection. You may be given an injected medication called Neupogen. This medication stimulates the growth of neutrophils to help you recover faster.
Showering and bathing
While you are neutropenic, keeping yourself clean is very important.
You should shower or bathe daily using Hibiclens® skin cleanser. Hibiclens contains a fast-acting antiseptic called chlorhexidine gluconate (CHG) that kills germs that live on your skin and will reduce your risk of infection. It can work for up to 6 hours after using it.
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 region, or on deep wounds.
- Do not use regular soap, lotion, powder, or deodorant after washing with Hibiclens®.
Wash carefully in your anal and genital areas using soap that can kill germs.
Your nurse will instruct you on guidelines for bathing and showering.
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.
- Use an ultra-soft toothbrush.
- You can use toothpaste that you buy in the store, but only the mouthwash that your nurse gives you. Most mouthwashes that you buy in the store contain alcohol, which could irritate and dry your mouth and throat.
- Do not use dental floss.
- Avoid licking your lips. It increases dryness and chapping.
- Apply a lip balm 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 antibiotic. 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 pain in your mouth due to mouth sores, your doctor will prescribe medication for the pain.
Your chemotherapy will cause you to have a very low red blood cell count, a condition known as anemia. Hemoglobin in red blood cells carries oxygen from the lungs to the tissues in all parts of the body. When your red blood cell count is low, your body can’t carry oxygen as well. Anemia can make you feel tired and weak. You may also feel dizzy, lightheaded, or have shortness of breath when changing positions quickly from lying to standing.
Some of the side effects of anemia include:
- Increased tiredness
- Rapid heartbeat
- Shortness of breath
- Pale skin
If you have anemia, your doctor may prescribe a blood transfusion.
Low platelet count (thrombocytopenia)
In addition to losing your ability to make neutrophils and other types of white blood cells, you’ll also lose your ability to make platelets. Platelets clump together to help stop bleeding. After your treatment, the number of platelets in your bloodstream will drop, a condition called thrombocytopenia.
You will need to take special care to avoid cuts and strenuous activities that may cause bleeding. You need to take special care of your gums and mouth because it’s common for bleeding to happen there.
You will need to take these special precautions if the number of your platelets becomes very low:
- Avoid sharp objects, such as razors, scissors, and nail clippers. You should only shave using an electric razor/shaver and not with a razor that has a blade.
- Follow the guidelines on mouth care previously discussed.
- If you are straining to have bowel movements, ask your doctor or healthcare team for a stool softener or laxative.
Tell your doctor if you develop any symptoms of bleeding. Be on the lookout for:
- 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 on the 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 having chemotherapy. The amount of nausea and vomiting you have will depend on the type of chemotherapy you will receive. Sometimes, you may experience nausea during your conditioning, or it may be delayed for several hours or days.
You will be given medication to prevent and control nausea prior to your conditioning. These medications work differently for each person. If the medication you are taking isn’t helping, tell your transplant team or doctor. You may need to try a different medication or take more than one kind of antinausea medication to feel better. Your healthcare 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, medications, infection, stress, or other medical conditions. If you are having diarrhea, you can become dehydrated due to loss of body fluids and electrolytes. The nursing staff will monitor fluid losses that you may have from diarrhea. It is important that you always use the collection container in the toilet in order to collect your stool so that it can be measured.
Constipation is the passage of dry, hard stool that occurs when materials move too slowly through the large intestine. The normal length of 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 or not eating enough fiber, a decrease in your activity, not moving around or walking enough, and side effects of chemotherapy, antinausea 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.
Some treatments affect the cells that line the mouth and digestive tract. This is known as mucositis. Mucositis can cause redness, swelling, tenderness, and sores on the lining of your mouth, tongue, and lips. You may experience some mouth and throat discomfort that can make it difficult to eat or swallow. Tell your nurse if you are having any of these symptoms so that they can be treated.
You may also experience discomfort in your salivary glands after radiation therapy. Your salivary glands are found on both sides of your neck and under your chin. These glands may become tender and swollen and you may produce less saliva. The swelling will decrease a few days after your conditioning. The decrease in saliva is usually temporary and improves after several months.
The chemotherapy that kills cancer cells also kills the cells that make your hair. Most patients will lose their hair during their transplant.
Losing your hair can be an unpleasant and upsetting experience. Like many patients, 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 and Your 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 of a wig.
Skin changes can be a side effect of conditioning. These changes include increased dryness, flaking, discoloration, and darkening. When you bathe, use a body soap that that is labeled for “sensitive skin.” Discuss the use of products with your nurse. Use alcohol-free lotions, creams, or oils to help relieve the dryness.
Your skin may also be very sensitive to the sun and may burn very easily. Avoid bright sunlight; when outdoors, wear a sunscreen with an SPF of at least 30 and protective clothing, such as 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. For more information, ask your doctor or nurse for the resource Skin Care Guidelines for Patients Receiving Radiation Therapy.
Now that the conditioning regimen is complete, it’s time for your stem cell infusion—your transplant.
On Day 0, your donor’s stem cells will be infused into your body. These stem cells will give you back the ability to make new blood cells and fight infections.
You will be given medications about 30 minutes before your transplant to help reduce any side effects that you may experience during the infusion. You will be closely monitored and your vital signs will be checked frequently during and after the infusion.
Your stem cell infusion
If the stem cells were obtained from a donor that is not related to you, they are immediately brought to MSK. Here, they are processed for an unmodified or a T cell-depleted stem cell transplant.
Unmodified stem cell transplant
In an unmodified stem cell transplant, the stem cells are given without first taking out the T cells (type of white blood cell that plays an important role in your new immune system). They are infused much like a blood transfusion over a few hours into your CVC. Red cells or plasma may need to be removed before you receive the stem cells if you and your donor are not the same blood type.
T cell-depleted stem cell transplant
In a T cell-depleted stem cell transplant, the T cells are removed from the stem cells before they are given to you. If you are going to have a T cell-depleted stem cell transplant, you will receive it after the T cells are removed in the laboratory. This takes 12 to 24 hours, so you will receive it the day after your donor has given the stem cells. The stem cells will be injected directly into your CVC from a large syringe. There are usually not any side effects from the infusion of T cell-depleted stem cells.
Umbilical cord blood stem cell transplant
On the day of your transplant, the umbilical cord blood will be thawed in our laboratory and brought to your room in a bag. If you are also getting partially matched T cell-depleted stem cells (haploidentical) from a family member, these will be given either on the same day as you receive the cord blood, or on the following day.
The cord blood will be given to you through your CVC. Sometimes, people experience nausea or get high blood pressure during an umbilical cord blood infusion. These issues will be treated as they occur.
Your doctor and nurse will discuss any questions or concerns you may have about the type of transplant you are going to receive.
You may experience some side effects during and after your infusion. This is more common when the stem cells are collected ahead of time and stored frozen for some period of time. Side effects can include nausea, vomiting, a tickle in your throat, or a cough. Other side effects that can occur include low blood pressure, chills, and fever. It’s important that you communicate with your healthcare team during your transplant. If you do experience side effects, your healthcare team will treat your symptoms.
If the stem cells you received had been frozen and preserved, you may notice a strong, garlic-like taste in your mouth during and after your transplant. 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 the stem cells and will gradually go away over 1 to 2 days. Your nurse will have lemons to use as a safe, natural air freshener during the infusion.
Additionally, if the stem cells you received have been frozen and preserved, your urine may look discolored, ranging from pink-tinged to bloody, for 24 hours after your transplant. This is your body’s way of getting rid of extra red blood cells that may be with the stem cells, but are not needed.Back to top
Phase 2: Transplant Day to Engraftment
Once you’ve had your transplant, you will enter a period of watching and waiting for your donor stem cells to begin producing healthy new blood cells, a process called engraftment. As engraftment occurs, the number of white blood cells, red blood cells, and platelets in your blood will begin to increase in number.
Some complications are possible after your transplant. Infection, bleeding, and anemia are some of the major ones that can occur while you are waiting for your blood counts to return to normal. In most cases, there are steps that you and your healthcare team can take to prevent, manage, and treat these complications.
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 the 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 have a chest x-ray and urine and blood tests. You will be given IV antibiotics to help your body fight the infection. Nearly all patients 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 patients 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.
Patients 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
As we mentioned earlier, time frames given are not exact, and some of the side effects or complications that are reviewed here can occur in more than one phase of your transplant journey.
You may have complications in your kidneys, liver, lungs, or heart. These are not common, but they can be serious. You are at higher risk if you already have a medical condition in any of these organs. This is why we carefully evaluate your organ function before your transplant.
Your kidneys filter your blood and make urine to send waste products out of your body. The chemotherapy and radiation therapy you receive before your transplant can affect how well your kidneys work. This is temporary, but waste products may remain in your blood until your kidney function improves. It also means that your kidneys will have more trouble getting rid of some of the medications you are given.
Your nurses will keep records of the amount of fluids you get. This includes what you drink and what you get through your IV line. They will also write down how much urine you make. This will help your doctors to know if you are beginning to have problems with your kidneys. You will also have blood tests every day to tell your doctors how your kidneys are working. If necessary, your doctors will adjust the doses of some of the medications you are getting to decrease the risk of further injury to your kidneys
In some people, small blood vessels in the liver are injured. This is called “sinusoidal obstruction syndrome” or “veno-occlusive disease.” If this happens it can cause your liver to become enlarged and may damage your liver cells. Fluid may fill your abdomen (belly). This usually begins within the first 3 weeks after a transplant. Everyone having a transplant will receive a medication during their transplant process to help reduce the risk of developing sinusoidal obstruction syndrome or veno-occlusive disease.
If you have any side effects to your liver, your doctor will discuss the treatment options with you in more detail.
Infections that affect the lungs, including pneumonia, may cause breathing problems after a transplant. These problems most commonly develop in the first few weeks after a transplant and can be serious. Your healthcare team will watch you closely for any sign of pneumonia. Tell them if you notice any change in your breathing. Do not ignore a cough or shortness of breath. The treatment for pneumonia depends on what caused it.
To help prevent problems with your lungs, exercise them. This may help to keep them clear. Your nurse will show you how to do deep breathing. You can also use an incentive spirometer, which is an instrument to help you practice deep breathing. Even getting out of bed and doing breathing exercises helps.
Your heart pumps blood throughout your body. Certain chemotherapy medications may have side effects that damage the heart. Your doctors will watch your heart function carefully while you are in the hospital.
Graft versus host disease
Graft versus host disease (GVHD) occurs when the donor’s immune cells (T cells) start to attack your body’s organs and begin to damage them. There is a chance that GVHD will develop when the new stem cells begin to engraft. A close match of HLA or tissue type between you and your donor helps lower this risk, but does not eliminate it.
Risk factors for GVHD include your age and the gender of your donor. Anyone whose donor is not an identical twin receives some type of prevention for GVHD. This prevention includes either removing the T cells from the transplant (T cell depleted), or giving medications to prevent those T cells from causing GVHD. There are pros and cons to each method, and there are reasons that you would receive one or the other. Your doctor will discuss these with you before your transplant.
There are two kinds of GVHD: acute (early) and chronic (late and longer lasting).
Acute GVHD usually develops within the first 100 days after a transplant, but can occur later. Chronic GVHD usually develops after 100 days, but rarely before the first 3 months after transplant. The symptoms of either may be mild to severe. You may develop acute, but not chronic GVHD. You may develop chronic GVHD without having had acute GVHD. Or, you may develop both. You may or may not have symptoms between the time that you develop acute and chronic GVHD.
Symptoms of acute GVHD include:
- A skin rash that appears on parts of the body or over the entire body
- Jaundice (yellow skin and eye color) and an enlarged liver
- Abnormal liver blood tests
- Loss of appetite
- Nausea and vomiting
- Mild to severe diarrhea
Symptoms of chronic GVHD include:
- Dark skin rash or dry or thickened skin
- Loss of appetite
- Weight loss
- Dry mouth
- Tightness and discomfort in the mouth
- Dry eyes
- Hair loss
- Decreased energy
GVHD may slow the growth of the bone marrow and recovery of the blood counts. This means it will take longer for your immune system to function properly and therefore you can be at an increased risk of infections. It may affect one or more parts of your body. If you have evidence of GVHD, your doctor will discuss the treatment plan with you.
Graft failure or rejection
Transplanted stem cells sometimes do not grow successfully inside the body. This is called graft failure. Graft rejection means that your immune system has rejected your new stem cells and your blood counts do not recover, or your blood counts recover and then decline again. You will receive treatments before your transplant to prevent this from happening.
The risk of graft rejection lasts about 2 to 4 weeks after a transplant. Occasionally, graft failure can happen at a later time after a transplant. If this happens, one option may be to get more stem cells from your donor, if they are available. This is called a “boost.” Your doctor will discuss treatment options with you if this occurs.
Once your blood counts have recovered, and if any side effects or complications you may have experienced have resolved, your inpatient team will begin working with you and your caregiver to prepare you for discharge. On average, people can be discharged about 3 weeks from their day of transplant. It may be a few days before that, or it may be longer than 3 weeks, depending on your stem cell source and your particular treatment plan.
To be discharged from the hospital, you must:
- Have no fever
- Have blood counts that are in a safe range (neutrophil count higher than 1,000)
- Be eating and tolerating some solid food
- Be drinking 1.5 to 2 liters of liquids a day
- Tolerating your oral medications
- Have a caregiver to assist you
Most of the time, your CVC will be removed right before you are discharged.
Your transplant team will work with you before you are discharged to make plans for your follow-up care. You will be seen in the outpatient clinic within 1 week of your discharge.Back to top
Phase 4: Early Convalescence
This phase of your recovery extends over a long period of time—discharge to one year (or longer) after your transplant. It is important to remember that although your blood counts are coming back up to the normal range, your immune system is still very immature. You will still need to take preventive medications and follow precautions to keep yourself healthy and avoid infection.
Some complications, particularly those that affect the organs, may become evident during this phase, even if they were not a problem earlier in your course.
The time frames given here are general guidelines and may vary. Your transplant team may give you a more exact time frame.
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 “Allogeneic stem cell transplant” and “Irradiated cellular blood components.” This will let paramedics or staff in any hospital know what to do if you are in an accident and cannot tell them yourself.
Discuss with your transplant team 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: www.medicalert.org.
You may be very happy and feel ready to go home. However, it is common for people to have some worries and concerns as their discharge date draws near. At home, you and your family will need to manage your care. Feeling confident and comfortable doing this is a process that takes time. You can meet with your social worker during your follow-up appointments. He or she can help you get the services you need and can give you emotional support.
When you go home, you will need to adjust to living with your family again. You may find that the precautions you must take in the months ahead may add some stress to your life. People have told us that the key to managing this new stress is to remain as calm and confident as you can. Regaining a sense of balance and comfort will come with time.
You will not feel the same way you did before your illness. You may feel tired and weak. Your appetite may not be what it once was. You may have changes in your senses of taste and smell. It may take time for you to regain your strength and to be able to take part in the activities you enjoyed before your transplant.
It usually takes 12 to 18 months for your immune system to recover from your transplant. We often tell people that the first year after transplant is like your first year of life as a newborn baby. During that time, you are at risk for infection. Your transplant team will be checking your blood cell counts to see how well your immune system is working. This will help them advise you about any changes to the guidelines you must follow.
Be aware of the symptoms of infection listed below. Call your doctor if you have:
- A temperature of 100.4° F (38.0° C) or higher. Do not take acetaminophen (Tylenol®).
- 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, and/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 on urination, or both
- If you still have a CVC, and you develop a fever and/or chills, or you have any difficulty flushing it
- Irritation in your rectum, including burning and pain
- A rash
- Small blisters, similar to cold sores, around your mouth or on any other part of your body
You can catch viruses more easily until your immune system is back to normal. Also, viruses that you have had in the past can reactivate. One of these is the virus that causes chicken pox and shingles. If you are exposed to either of these illnesses, call your transplant doctor or nurse immediately. You will need to be assessed. The virus can also reactivate in patients who have already had chicken pox as a child. This often starts as pain in the skin with pimples or fluid-filled blisters. If you develop blisters, they can be tiny or as large as a pencil eraser. The blisters may be painful, itch, or burn. If you have any of these symptoms, call your doctor or nurse immediately so you can be treated.
Once your immune system has recovered, you will begin receiving your childhood vaccines. 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 and can help prevent infection. Follow the guidelines below.
- Shower or bathe daily. 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 your underarms and groin. 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 you bathe, while your skin is still damp. Gently pat your skin dry with your towel. Do not use lotions containing alcohol. They will increase dryness.
- Hair usually starts to grow back about 3 months after the transplant. It is possible that your hair may grow back with a different texture. Although it is rare, hair loss can happen months or years after the transplant.
- Limit your time in direct sunlight. Your skin will be more sensitive and may burn more easily after your transplant. The medications you are taking may add to this. Whenever you are in the sun, protect your skin with a sunscreen that has an SPF of at least 30. Reapply it often. If you will be in direct sunlight for 20 minutes or longer, cover your skin with cotton clothing and a protective hat. Prolonged exposure to the sun may also reactivate cold sores (herpes simplex virus). Over stimulation of the skin by the sun can also cause GVHD of the skin.
- 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 discard cleaning solutions when they 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. Discuss any concerns you may have with your primary attending.
Continue with mouth care as described earlier until your healthcare 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 called 0.5).
- Your platelet count is 20,000 (sometimes called 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 an infection. Soak them every day in any type of denture cleaner. Use the directions on the product. Then, 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.
Dryness of the mouth is another symptom you may have for 3 to 4 months or longer after your transplant. Do not use commercial, alcohol-based mouthwashes or hydrogen peroxide. They will dry and irritate your mouth. Instead, use a mild salt-water rinse. Make it 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.
Your salivary glands may not be as good at washing bacteria from your mouth after your transplant. This increases your risk of cavities. Use toothpaste with fluoride. You can also use a mouthwash with fluoride once your mouth has fully recovered 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.
Caring for your CVC
It is just as important to keep your CVC clean after you go home as it was while you were in the hospital. If you go home with a CVC, your nurse will teach you how to care for it at home and you will have a chance to practice with the nurse watching.
You can also review the resource Caring for Your Central Venous Catheter, located at the back of this guide.
Your home environment
Your home must be kept as free of dirt and dust as possible. However, you should not go to extremes. Do not repaint your walls or put down new carpets. In fact, you should not be around any renovations or construction until your transplant team approves. This includes those in process and those done within the past 3 months. Stay out of any musty area where mold may grow, such as a damp basement. 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.
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, or iron. Your bathroom should be kept very clean (especially the tub and toilet). Use a disinfectant regularly.
Wash your eating utensils and linens carefully. They do not need to be washed separately from the rest of your household. 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. Use only your own towels and washcloths, not those of your family members.
Household plants can remain 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.
Animals can carry diseases. They may put you at greater risk for infection while your immune system is recovering. 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 feces. Be sure to protect yourself from bites or scratches. Do not handle or care for birds, lizards, snakes, turtles, hamsters, or other rodents while you are recovering. If you have an aquarium and you must clean it yourself, you must protect yourself by wearing gloves. If you have a cat or dog at home, 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 is best that you select a healthy dog or cat that is more than 1 year old. Have it spayed or neutered. Outside of your home, avoid close contact with animals in a farm or a petting zoo.
Family and visitors
You can have close physical contact with those in your immediate family. However, do not have close contact with someone who has a cold or any signs of being sick. Wear a mask if you must be in the same room with someone who is sick. Your family members and close friends should get a yearly flu shot.
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, his or her 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).
Outside your home
Take regular walks outside, but avoid dirty areas and construction sites. Walking is an excellent way to regain your strength and endurance. However, during the first few months after your transplant, avoid the following places when they are crowded:
- Shopping malls
- Movie theaters
You can go to these places at off-peak hours, when there are fewer people. Your doctor will tell you when some or all of these restrictions can be lifted.
You should avoid taking public transportation such as a train or bus for at least 3 months after your transplant. We understand you may need to take a taxi, car service, or other transportation such as Access-a-Ride to return for follow up visits. We recommended that you wear a mask and gloves when traveling by this means.
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 patients are discharged 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, purplish-red spots on the skin that do not disappear when you press them. You may see them on your lower legs or inside 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 have gone home with any of these symptoms and they increase in amount or frequency, call your doctor. If you have not had any of these symptoms and suddenly develop them, call your doctor. It may mean that 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 it 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 the bleeding persists, 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. This is to prevent transfused blood from causing GVHD. 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, follow the guidelines below:
- Use an electric razor when shaving.
- Use a soft-bristle toothbrush or an oral irrigator such as a WaterPic® to prevent gum bleeding. Do not use dental floss.
- Do not take aspirin, products that have aspirin, and aspirin-like medications, such as 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, 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 about this, discuss it 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 not unusual. 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. 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 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 patients 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 about resuming 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, follow these precautions:
- Avoid sex that involves penetration or contact with mucous membranes while your blood counts are low (a platelet count less than 50,000). This includes vaginal, oral, and anal sex or inserting fingers, vibrators, or other sex toys into your vagina or anus.
- 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.
- Abstain from 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.
- Hugging, cuddling, gentle touching, and kissing skin are other ways you can be intimate with your partner during this time.
For additional information about being sexually active during and after treatment, ask your nurse for the following resources:
Sexual Activity During Cancer Treatment: Information for Women
Sexual Activity During Cancer Treatment: Information for Men
Sexual Health and Intimacy
The American Cancer Society publishes 2 well-written resources on sexuality following cancer treatment. They are available for free from your local American Cancer Society or on the ACS website at the links below:
Sexuality for the Man With Cancer
Sexuality for the Woman With Cancer
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 Vaginal 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. This could have an impact on your relationship. However, as you regain your strength and increase your activities, this too will 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.
After your transplant, your organs need time to recover. Alcohol can harm your liver and recovering bone marrow. This harm can be worse if you are taking medications that can affect your liver. Do not drink alcohol until your doctor tells you it is safe.
- Other tobacco products
Doing so can lead to a serious lung infection. It can also increase your risk of a second cancer. If you need help quitting, contact the MSK Tobacco Treatment Program at 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 at least 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 patients 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 aspirations will be done every few months. They are usually done at 1, 3, 6, 12, and 24 months after transplant. If needed, your bone marrow may be checked more often or for a longer time after your transplant. Bone marrow tests tell us about the health and growth of your marrow.
If you had a transplant for acute leukemia, you may need to have lumbar punctures (spinal taps). This is especially true for patients who have had, or are at high risk for having, leukemia in the spinal fluid. 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 will usually be 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
Do not take aspirin, any medications containing aspirin, and all other 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: www.mskcc.org/cancer-care/patient-education/resources/common-medications-containing-aspirin-and-other-nonsteroidal-anti-inflammatory-drugs-nsa
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 specific 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
As mentioned previously, there is a possibility of organ complications after transplant. We have discussed issues that may come up with your kidneys, liver, heart, and lungs.
Additionally, there may be other organ systems that may be impacted, such as your endocrine system. Your endocrine system makes hormones. It may not return to normal after your transplant. You will have blood work and exams to check your hormone levels.
Some people develop hypothyroidism, or an underactive thyroid, after radiation therapy, or just as a part of aging. You will have blood tests to check for this side effect. If you develop it, you will need to take medication to supplement what your thyroid cannot make itself.
We are concerned not only with your recovery after your transplant, but also with any complications that may develop long term, and of course, your overall health and well-being.
You will be followed in our survivorship clinic after your transplant and will be monitored closely for any late side effects you may experience. Some of the testing you had done as part of your pretransplant evaluation will be repeated, including an EKG, echocardiogram, and pulmonary function tests. We will monitor you for any thyroid dysfunction, evidence of a hormonal deficiency, and any sign of osteoporosis. Health issues such as thyroid dysfunction or bone loss can develop in any person, even if they have not had a transplant, but we want to monitor you closely and keep you well.
Graft failure or rejection
Transplanted stem cells sometimes do not grow successfully inside the body. This is called graft failure. Graft rejection means that your immune system has rejected your new stem cells. You will receive treatments before your transplant to prevent this from happening.
The risk of graft rejection lasts about 2 to 4 weeks after a transplant. Occasionally, graft failure can happen at a later time after a transplant. If this happens, one option may be to get more stem cells from your donor, if they are available. This is called a “boost.” Your doctor will discuss treatment options with you if this occurs.
A concern for many patients 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.
After your transplant, you will lose the protection from the vaccines you received as a child. All transplant patients receive childhood vaccines once their immune system has recovered. This usually happens about 1 year after the transplant.
Once it is safe for you to receive vaccines, this will be coordinated by your transplant team. The vaccines can be given at MSK, or your NP can give your primary care doctor a list of the recommended vaccines. Please note, sometimes it is difficult for primary care doctors to get the vaccines, so you may need to receive them at MSK. You will receive only “killed” vaccines first, and if you respond to those, you will then receive “partially killed” vaccines, such as for measles and shingles.
You may develop cataracts if you received radiation therapy or high-dose steroids. 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 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
HLA (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.
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).
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.
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.
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.
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.
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.
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.
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.
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.
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 – The result of a change in the body or its function that indicates a potential problem or issue.
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 cells.
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.
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) - Also referred to as sinusoidal obstruction syndrome (SOS); 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
- Caring for Your Central Venous Catheter
- Common Medications Containing Aspirin and Other Nonsteroidal Anti-inflammatory Drugs (NSAIDs)
- Frequently Asked Questions about Blood Transfusions
- Hair Loss and Your Cancer Treatment
- Hand Hygiene and Preventing Infection
- Instructions for Interventional Radiology Procedures
- Low-Microbial Diet
- MedicAlert® Foundation Brochure
- Sexual Activity During Cancer Treatment: Information for Men
- Sexual Activity During Cancer Treatment: Information for Women
- Sexual Health and Intimacy
- Total Body Irradiation