Autologous Stem Cell Transplant: A Guide for Patients & Caregivers

Welcome & Overview

This guide is designed to help you and your loved ones understand what to expect throughout your transplant journey. The information in this guide isn’t meant to replace the information your transplant team will teach you. It’s meant to be a resource that you can refer to throughout the transplant process.

In this guide, we’ll explain some of the challenges you might have over the course of your transplant and recovery. But, this doesn’t mean you’ll have all of them. Because of that, you shouldn’t compare yourself to other people you know or have heard of who had a stem cell transplant. Everybody is unique.

Stem cell transplants have been done for many decades. They have gotten much better over that time. But, a stem cell transplant is still a complex procedure that requires a commitment from you, your caregiver, and your transplant team.

With an inpatient transplant, you’ll stay in the hospital before, during, and right after your transplant.

With an outpatient transplant, you’ll stay in an apartment near the hospital and come to the Outpatient BMT Clinic every day. You must have a caregiver to take care of you the whole time of your transplant.

If you have complications at any time during an outpatient transplant, you’ll be admitted to the hospital. When it’s safe, you’ll leave the hospital and come to the Outpatient BMT Clinic like before. If you need to, you’ll stay in the hospital for the rest of your transplant.

Autologous transplants can be done safely while staying in the hospital (inpatient) or without staying the hospital (outpatient). This guide has information about both inpatient and outpatient transplants. But, an outpatient transplant isn’t right for everyone. Your doctor will talk with you about whether an outpatient transplant is an option for you.

Having a transplant is a long process. Getting ready for your transplant is just the first part of your journey. If you have an inpatient transplant, you’ll be in the hospital 24 hours a day before, during, and for some time right after your transplant. If you have an outpatient transplant, you and your caregiver(s) will stay at an apartment near the hospital approved by your doctor or at a furnished apartment at MSK’s 75th Street Patient Residence. These things will be discussed in more detail in this guide.

At MSK, you’ll have a large transplant team working together to care for you as you go through each phase of your transplant. It’s normal to have many emotional changes during the transplant process. Your transplant team includes many providers, including social workers, chaplains, psychiatrists, and members of our Integrative Medicine Department. All these healthcare providers are available to support and help you and your caregiver(s) cope with what you may feel.

The Importance of Communication

Throughout your transplant journey, it’s very important to communicate clearly with your transplant team and caregiver about how you’re feeling. If anything is bothering you, even if it seems small, tell a member of your transplant team. This is true for how you’re feeling both physically and emotionally. It’s very important not to let things build up. If you do, small problems can grow into larger problems. The more information you communicate to your transplant team, the more they can help you. There’s usually something they can do to make you feel more comfortable.

Below are some of the ways you can communicate with your transplant team:

  • Between 9:00 am and 5:00 pm, call your doctor’s office. After 5:00 pm, call 212-639-2000 and ask for the doctor covering bone marrow transplant.
  • If you’re having an outpatient transplant and it’s between 9:00 am and 7:00 pm, call the Outpatient BMT Clinic at 212-639-3122. After 7:00 pm, call 212-639-2000 and ask for the doctor covering bone marrow transplant.
  • If you’re in the hospital, talk with any member of your inpatient transplant team or ask to speak with the Charge Nurse, Clinical Nurse Specialist, or Nurse Leader. While you’re inpatient, it’s important to talk with your inpatient team, not call the outpatient office. Also, you should choose 1 caregiver to call the nursing station for updates, then that person can relay the information to the rest of your friends and family.
  • Use your MyMSK account. MyMSK is MSK’s patient portal. You can use MyMSK to ask questions about your appointment schedule, request a prescription refill, or request patient education information. Never use MyMSK to communicate any symptoms to your transplant team. You’ll get more information about MyMSK at your initial consult visit. You can also read the resource Communicating with Your Healthcare Team Using MyMSK.

How to Use This Guide

There’s a lot of information to read and understand in this guide. Read the entire guide at least once, including the additional resources included in the back. You may find it easier to read a few sections at a time rather than trying to read the entire guide at once. We encourage you to refer to this guide as your treatment progresses.

We recommend that you highlight or write notes on anything that you don’t understand or have a question about. There’s no such thing as a silly question, so please ask about anything that’s on your mind.

Stem Cell and Bone Marrow Basics

Hematopoietic (hee-MA-toh-poy-EH-tik) stem cells (usually just called stem cells) are immature cells that grow into all 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 to replace older blood cells. Stem cells also divide to make newer stem cells.

Figure 1. Your stem cells divide and change into the different types of blood cells in your body.

Figure 1. Your stem cells divide and change into the different types of blood cells in your body.

A bone marrow transplant means that the stem cells are taken from the donor’s bone marrow.

A stem cell transplant means that the stem cells are taken from either the donor’s bone marrow or their bloodstream.

Most of the stem cells in your body are in your bone marrow (the soft tissue in the spaces in the center your bones). Bone marrow is mostly found in the larger bones in your body, such as your hip, breastbone, and pelvis. A few stem cells are also found in your bloodstream.

You might hear your transplant called a stem cell transplant or a bone marrow transplant. A bone marrow transplant is a specific type of stem cell transplant. With a bone marrow transplant, the stem cells are taken from the bone marrow. With a stem cell transplant, the stem cells are taken from either the bone marrow or the bloodstream.

Understanding Your Autologous Stem Cell Transplant

When you have an autologous stem cell transplant, your stem cells are harvested (collected) from your body and frozen. “Autologous” means that the stem cells come from yourself. The 2 general sources of stem cells that can be used in an autologous stem cell transplant are:

  • Peripheral blood stem cells. These are collected from your bloodstream through a process called apheresis (a-feh-REE-sis). To increase the amount of stem cells in your bloodstream, you’ll get injections (shots) of a medication that causes your body to make more stem cells than usual. The stem cells escape from your bone marrow into your bloodstream, where they can be collected easily while you’re awake. For more information about the peripheral blood stem cell harvesting process, read the resources Autologous Peripheral Blood Stem Cell Harvesting and Giving Yourself an Injection of Filgrastim (Neupogen®) or Pegfilgrastim (Neulasta®) With a Prefilled Syringe.
  • Bone marrow stem cells. These are collected from your bone marrow through a procedure called bone marrow harvesting. The procedure is done in the operating room while you’re asleep. Most people go home the same day of the procedure. For more information about bone marrow harvesting, read the resource About Bone Marrow Harvesting.

After your stem cells are harvested, you’ll get high doses of chemotherapy or a combination of chemotherapy and radiation therapy. This is called conditioning. The high-dose treatment kills cancer cells, but also eliminates the blood-producing stem cells that are left in your bone marrow.

After your conditioning, the stem cells that were collected will be given (transplanted) back to you. This lets your bone marrow make new blood cells. These things will be discussed in more detail later in this guide.

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Getting Ready for Your Transplant

Your Initial Consultation Visit

During your initial consultation visit, you’ll meet with your doctor and other members of your transplant team. Your doctor will take a complete medical and surgical history, do a physical exam, and talk with you about what they think is the best treatment plan for you. This plan may also be discussed with other transplant doctors to make sure everyone agrees on the best plan for your specific situation.

Getting Ready for Your Transplant

Before your transplant, you’ll make practical, physical, and emotional preparations for your transplant. Here’s a list of things that will happen and things you might need to do to get ready:

  • Learn about your transplant. The information your transplant team will go over with you is meant to help you learn, not scare 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 to see if there’s a dedicated case manager for you.
  • 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 them to read it at least once.
    • If you’re having an inpatient transplant, it’s important that you have a caregiver when you’re discharged from the hospital.
    • If you’re having an outpatient transplant, you’ll need a caregiver to stay with you whenever you aren’t in the outpatient BMT clinic.
  • Fill out a Health Care Proxy form. A health care proxy is a legal document that identifies the person who will speak for you if you can’t communicate for yourself. The person you identify is called your health care agent. This person can be different from your caregiver. For more information, talk with your social worker or any other member of your transplant team. You can also read the resource Advance Care Planning.
  • 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 or a leave of absence from work. If you’re working, make arrangements to go on disability or take a leave of absence. You should plan to be away from work for about 6 months, but the exact length of time is different for everyone.
  • Plan where you’ll stay. You’ll need to stay somewhere located within 1 hour of MSK for the first 100 days after the day of 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, talk with your transplant team about your options. Ask for an appointment with a fertility specialist to discuss how your treatment may affect your ability to have children in the future and the steps you can take to preserve your fertility. You can also read the resources below for more information.
  • Arrange for childcare and pet care, if needed. 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 lose their hair during their transplant. Think about if you’d like to cut your hair. If you decide to wear a wig, visit a wig store as soon as you can. That way, you can find one that closely matches your natural hair, if you want to.
  • Have your pretransplant evaluation. You’ll have a series of medical tests. Your clinical nurse coordinator will review which tests are needed. Your doctor’s office coordinator will work with you to try to schedule these tests at a time that’s convenient for you.
  • Meet with a clinical dietitian nutritionist, if needed. If you have specific nutritional needs, you’ll meet with a clinical dietitian nutritionist to review special dietary requirements and safe food handling. If you want to meet with a clinical dietitian nutritionist, ask your nurse for a referral.
  • Meet with a pharmacist. The pharmacist will go over all the medications you’ll take before and after your transplant.

Your Transplant Team

A team of healthcare providers will care for you throughout your treatment. You’ll meet many of them as you progress through your transplant journey. You might not meet some members, such as your doctor’s office coordinator, laboratory staff, or our service coordinator, but know that they’re all working to help you. Below is a list of your team members and their roles.

  • An attending doctor will be in charge of your care throughout your treatment. Even though one specific doctor will be your primary outpatient doctor, different doctors might care you for while you’re in the hospital.
  • A fellow is a doctor who has finished general training and is getting more training in cancer care.
  • An advanced practice provider (APP) is a healthcare provider who works with your doctor to provide you with care. They can give medical treatments and prescribe medications. They may also sometimes see you instead of your doctor. APPs include nurse practitioners (NPs), physician assistants (PAs), and certified registered nurse anesthetists (CRNAs).
  • A clinical nurse coordinator is a nurse who will communicate and work with you, your caregiver, and your team of doctors to organize and schedule the testing, procedures, and consultations with other professionals needed before your transplant. Your clinical nurse coordinator will teach you about your specific treatment plan.
  • Nursing staff will work with you when you’re seen at outpatient visits and while you’re in the hospital. They’re registered nurses (RNs) specially trained in the care of people having a stem cell transplant. 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. During your transplant, either inpatient or outpatient, you’ll have a team of primary nurses that will care for you. The nurses work 12-hour shifts and try to maintain consistency with who will be working with you. Both the inpatient and outpatient nurses work closely with your transplant team to manage any symptoms and can help you with any questions or concerns you may have.
  • A nursing assistant or patient care technician (PCT) provides basic care and support under the direction and supervision of a registered nurse.
  • A hospitalist is a doctor who sees people only while they’re in the hospital. At MSK, there’s a hospitalist on duty all night.
  • A clinical pharmacist who specializes in the care of people having stem cell transplants will review your medications with you and your caregiver, teach you how to take them properly, and tell you about any side effects they might cause.
  • A social worker will help you, your family, and your friends manage the stress that comes with the transplant process. Social workers understand the issues faced by people having transplants and are available to listen, offer counseling, and refer you or your loved ones to other resources and services.
  • A transplant service coordinator will work with you and your insurance company to determine your transplant benefits. This person is familiar with the insurance issues faced by people having transplants. Each insurance company has its own policies and requirements. When your insurance company needs authorization, your transplant service coordinator will help with that process.
  • Office coordinators provide administrative support to your attending doctors and their nurses. You might speak with them when you submit information, are scheduling an appointment, or have questions for your transplant team. Office coordinators are sometimes called physician office assistants (POAs).
  • Care coordinators work in the outpatient areas and monitor the flow of patients in and out of the clinic. They make sure that patients have all of the tests, scans, and treatments the medical team orders either completed or scheduled. Care coordinators also manage patients’ medical records and coordinate their future appointments. Care coordinators are sometimes called session assistants (SAs).
  • A clinical research coordinator works with your transplant team and will talk with you and explain some of the research studies at MSK that you might be able to participate in. These studies don’t include anything that’s related to your particular treatment. They mostly concern collecting samples or data. Clinical research coordinators are sometimes called research study assistants (RSAs).
  • Patient representatives are liaisons between patients and families and the hospital staff. They’re here to protect your rights and help explain hospital policies and procedures. Patient representatives can help you with any concerns about your care and help you communicate with members of your transplant team.
  • A clinical dietitian nutritionist is a food and nutrition expert who will assess your nutritional status, talk with you and your caregiver about your diet, and give you advice about changing your diet to help manage your symptoms and side effects.
  • A physical therapist (PT), occupational therapist (OT), or both will see you while you’re in the hospital. They’ll work with you to help you keep up your strength and stamina during your recovery.
  • A room service associate will explain how the room service works, including the hours it’s available and how to use it. They’ll make sure you get the right menus and deliver your meals.
  • A case manager will see you while you’re in the hospital, give required updates to your insurance company, and help you arrange home care as needed.

Your Caregiver

‌  Everyone having a transplant will benefit from having support from a caregiver before, during, and after their transplant. The caregiver is usually a family member or a close friend available to help with basic day-to-day medical and practical issues, as well as provide emotional support.

To have an outpatient transplant, you must have a clear caregiver plan. There are no exceptions. Your transplant team will review this with you. Your caregiver must be available 24 hours a day, 7 days a week during your transplant.

Your transplant team will give your caregiver specific instructions about what they to do. Some of your caregiver’s responsibilities will include:

  • Medical support
    • Gathering information from your transplant team.
    • Caring for your catheter.
    • Making sure you take your medications and keeping a written record of when you take them.
    • Taking your temperature every 4 hours while you’re awake and away from the clinic.
    • Keeping a written record of your temperatures.
    • Keeping a written record of how much liquid you drink every day.
    • Noticing any changes in your condition.
    • Telling your transplant team about any new symptoms you have or changes in your condition.
    • Calling for medical help in an emergency.
  • Practical support
    • Escorting you to and from your daily visits at the hospital.
    • Dealing with financial and insurance issues.
    • Preparing your meals according to a low-microbial diet.
    • Keeping the place you’re staying (75th Street Residence, apartment, or house) clean.
    • 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.
  • Emotional support
    • Paying attention to your moods and feelings.
    • Communicating with you and listening to you.
    • Understanding your needs and decisions.

Choosing the right caregiver

During an outpatient transplant, being a caregiver is a full-time, 24-hour, 7-day a week responsibility. It’s tiring, demanding, and stressful, especially if your condition, schedule, or treatment changes.

If you don’t have just 1 person to serve as your caregiver, then it’s okay to have more than 1 person share the role. However, it’s best to limit the number of caregivers to 1 or 2 people.

During your transplant, your caregiver must take you to and from your daily visits to the Outpatient BMT Clinic. They may not be able to work and will need to stay with you for most of the day and night. While you’re in the Outpatient BMT Clinic during your daily visits, your caregiver can take some personal time. This is something we strongly recommend.

If you’re having an inpatient transplant, it’s still important that you have a caregiver plan for when you’re discharged from the hospital. Although the time frame for 24/7 caregiver support may vary, it’s generally recommended that you have a full-time caregiver for the first 2 weeks after your discharge.

For inpatient transplants your caregiver’s medical support responsibilities include:

  • Making sure you take your medications
  • Making sure you are drinking enough fluids and have adequate nutrition
  • Noticing any changes in your condition
  • Calling for medical help in an emergency

Caregiver responsibilities in terms of practical support and emotional support are the same whether your transplant is done as an inpatient or as an outpatient.

It’s important for your caregiver to stay positive, calm, and flexible while providing you with the support and encouragement you need. It’s also important for you to understand that the caregiver role is challenging and that your caregiver might at times feel overwhelmed by the responsibilities.

Take time now to think about who you want 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.


‌  If your caregiver gets sick or shows any signs of a cold or flu (such as a cough, fever, or sore throat) 1 week before or at any time during your transplant, tell your transplant team right away.
 


Resources for caregivers

Caregivers can have physical, emotional, spiritual, and financial distress. Resources and support are available to help manage the many responsibilities that come with caring for a person having a transplant. For support resources and information, contact your transplant social worker. You may also find the resource Caregivers' Guide for Bone Marrow/Stem Cell Transplant helpful.

At MSK, our Caregivers Clinic provides support specifically for caregivers who are having a hard time coping with the demands of being a caregiver. For more information, call Dr. Allison Applebaum at 646-888-0200 or go to www.mskcc.org/cancer-care/doctor/allison-applebaum.

Coping with Separation from Your Children

Whether you’re having an inpatient or outpatient transplant, being apart from your children will be hard for you and your family. We strongly recommend that you talk with your social worker about your concerns and develop a plan to maintain strong ties to your children during your transplant.

Below are some things that others have done to remain in contact with their children during their transplant.

  • Talk with your children regularly using programs or apps like Skype, Google Hangouts, or FaceTime. Set up a time that you talk to them each day, such as when they get home from school and before they go to bed. Get into a routine of using the computer to see and talk to them.
  • Paint or create other crafts to send home. Ask a member of your transplant team to arrange for volunteers from the Patient Recreation Center to bring you supplies.
  • Use your cell phone or a tape recorder to record yourself reading your children’s favorite stories. Upload these recordings to the web, give them to your caregiver, or e-mail them to your children. They can read along with these stories while listening to your voice.
  • Keep copies of your children’s favorite stories with you in your hospital room. At night, you can use Skype to read along with them before they go to sleep.
  • Decorate your hospital room with your children’s artwork and pictures of your family.
  • Give your children a special coloring book or journal for times when they miss you or when feelings are difficult. Your caregiver can bring the colorings to you. You can talk with your child about them over Skype or on the phone.

We know that nothing will replace physical contact between you and your children, but we strongly encourage you to use all of the technology that’s available to maintain a strong bond with them while you’re away.

For more help maintaining your relationship with your children, contact your social worker.

Your Pretransplant Evaluation

Before you become a transplant candidate, your overall physical condition will be evaluated. You’ll need to make several trips to MSK to have tests. We often call this the “work-up” or “restaging” period. During the work-up, you’ll need to have some, but not always all, of the following tests.

  • Chest x-ray. This is done to make sure your lungs are clear and there’s no sign of infection or other problems.
  • Blood tests. These are done to check several things, including your kidney function, liver function, blood counts, and past exposure to certain viruses.
  • Urine test. This is done to see if there’s anything abnormal in your urine (pee).
  • Electrocardiogram (EKG) and echocardiogram (echo). These are done to give your transplant team information about your heart.
  • Pulmonary function tests (PFTs). These are breathing tests that measure how well your lungs work.
  • Computed tomography (CT) scan. This is a radiology test that gives more detailed images of soft tissue and bone than a standard x-ray. Sometimes, CT scans use contrast dye that you drink or have injected into your veins. It’s very important to tell your doctor if you know you have an allergy to contrast dye, seafood, or iodine. If you have a mild allergy, you can still have contrast dye, but you’ll need medications before getting the dye to prevent a reaction.
  • Positron emission tomography (PET) scan. This is a radiology test that’s used to look at certain types of cancer, as well as your organs and how they work 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 a dentist here at MSK. If you see your own dentist, ask for a letter saying that you have no dental problems. If there are issues, ask your dentist to contact your doctor’s office to discuss them. Your dental exam can be done up to 3 months before you’re 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 put into the bone marrow, and a small amount of bone marrow liquid will be taken out. A bone marrow biopsy might be done at the same time. This biopsy involves collecting a tiny piece of bone for examination. This is done to check how well your bone marrow is making cells and to look for any sign of cancer in the marrow.
  • Lumbar puncture (spinal tap). This is done to 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 put 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 your CSF to keep the cancer from spreading there or to treat cancer if it’s already there.
  • Skeletal survey. This is done to look for bone damage caused by cancer. It’s usually only done for people who have multiple myeloma. It involves taking x-rays of the major bones in your body. It can take a few hours.
  • Consultation with a radiation oncologist. If you’re having radiation therapy as part of your conditioning, you’ll meet with your radiation oncologist to go over your treatment plan. You might also have a CT scan, PET scan, or both during this visit. They’ll be used to plan your treatment. You’ll also have a treatment planning session called a simulation. During this session, several imaging scans 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 it’s safe to start your treatment.

Your doctor or nurse will explain any other tests that you might need.

Your Preadmission Appointment

Once your pretransplant evaluation is finished and you have the date of your transplant, you’ll have your preadmission appointment. This appointment is usually 1 to 2 weeks before you’re admitted to the hospital. At this appointment:

  • Your doctor will review your treatment plan with you.
  • Your doctor will go over the consent forms and you’ll sign consent for your transplant (if you haven’t already).
  • You’ll meet with your clinical nurse coordinator. They’ll give you a calendar outlining your treatment plan, review information, and answer your questions.
  • You’ll meet with your clinical pharmacist again to review the medications you’ll take during and after your transplant.
  • You may be asked to sign a consent form for transfusion (if you haven’t already). This is because you may need blood or platelet transfusions when your blood counts are low after your transplant. For more information about blood transfusions, read the resource Frequently Asked Questions About Blood Transfusions.

‌  Between your preadmission appointment and when you’re admitted to the hospital, it’s very important to call your transplant doctor’s office if you have any of the following:
 

  • Signs of a cold, such as:
    • A runny nose
    • Congestion
    • A cough
    • A fever of 100.4 °F (38.0 °C) or higher
  • Nausea (feeling like you’re going to throw up)
  • Vomiting (throwing up)
  • Diarrhea (loose or watery bowel movements)
  • A toothache
  • An open wound
  • Any other new problem, even if it seems small

Your doctor will decide if your admission for transplant should be delayed. It could be very dangerous to start your chemotherapy while you have an infection, even if it’s just a cold. This is because your immune system won’t be able to fight the infection.


Having Your Tunneled Catheter Placed

You’ll need a tunneled catheter during your transplant. A tunneled catheter is a type of central venous catheter (CVC). It’s a tube that’s put into a large vein in your upper chest (see Figure 2). Outside your body, the catheter divides into 2 or 3 smaller tubes called lumens (see Figure 3).

Figure 2. Veins and your heart

Figure 2. Veins and your heart

Figure 3. Tunneled catheter

Figure 3. Tunneled catheter

A tunneled catheter lets your transplant team infuse 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 tunneled catheter will make your treatment much more comfortable.

  • Most people having an inpatient transplant have their tunneled catheter placed on the day they’re admitted to the hospital.
  • Most people having an outpatient transplant have their tunneled catheter placed they day before they’re admitted to the Outpatient BMT Team.

Sometimes, it may need to be placed a few days before hospital admission.

The procedure to place your tunneled catheter will be done in the Interventional Radiology department at Memorial Hospital (MSK’s main hospital). Your clinical nurse coordinator will talk with you about the details of having your tunneled catheter placed. For more information, read the resource About Your Tunneled Catheter.

After Your Tunneled Catheter is Placed

After your tunneled catheter has been put in, you’ll be monitored until you’re fully awake.

  • If your tunneled catheter is being placed on the day you’re being admitted to the hospital, you’ll be taken to the inpatient stem cell transplant unit once you’re fully awake. The inpatient nursing staff will care for your tunneled catheter while you’re in the hospital.
  • If your tunneled catheter is put in a few days before you’re admitted to the hospital, you’ll be discharged once you’re fully awake. You must have a caregiver with you if you’re going home after your tunneled catheter is placed. Your nurse will change the dressing, if needed.

Keep your tunneled catheter secure at all times to avoid pulling it. You can tape the lumens of your tunneled catheter 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 tunneled catheter. You can find more information about caring for your tunneled catheter in the resource About Your Tunneled Catheter.

Your tunneled catheter is usually taken out 2 to 3 weeks after your transplant.

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What to Expect in the Hospital

This section has basic information about what to expect if you’re admitted to the hospital during any part of your transplant. This applies whether you have an inpatient or outpatient transplant.

While You’re in the Hospital

There are 2 transplant units in Memorial Hospital. The nurses on each unit are specially trained to care for people having transplants, and all the same guidelines are followed on both floors. You may need to change your room or floor while you’re in the hospital. We try to avoid this as much as possible.

Your primary nursing team will care for you during your hospital stay. Nurses usually work 12-hour shifts starting at either 7:00 am or 7:00 pm. When nursing shifts change, your nurse will share the information about what happened with you and your care during that shift with the nurse taking over.

What to Expect

  • You’ll be in protective isolation to lower your risk of getting an infection. Anyone who goes into your room must clean their hands and wear a mask and gloves. For more information, read the resource Hand Hygiene and Preventing Infection.
    • Sometimes, you might need extra isolation precautions. A sign telling your visitors about the type of isolation and what they need to do will be put on the door to your room.
    • Even though you’re in isolation, you can have visitors 24 hours a day, every day. We recommend that no more than 2 visitors be in your room at once.
    • Children 10 years or older can visit you as long as they follow the isolation procedures. For more information about visitors, read the “Visitors” section below.
  • You’ll be in a private room that has a bathroom for your use only. Your room will have Wi-Fi and a TV with cable channels.
  • You’ll be connected to an IV pole with electronic pumps during most of your hospital stay.
  • If you’re at risk of falling, someone will be available to help you go to the bathroom. Your treatment team will tell you more about how to prevent falls. You can also read the resource Call! Don't Fall!.

Testing and Evaluations

Before 6:00 am every day, a member of your transplant team will weigh you and take a sample of your blood. Your blood will be checked to see how your white blood cells, red blood cells, and platelets are recovering. Other blood tests will be done as needed to check your kidney and liver, monitor for infections, check the level of chemotherapy or other medications in your blood, and to help evaluate your overall condition.

Your vital signs will be taken every 4 hours, even during the night. Your urine will be measured daily . It’s important that we know how much urine you’re making.

Visitors

  • Your family and friends are welcome to visit you. One caregiver can stay overnight with you. But, the following people shouldn’t visit you:
    • Anyone who has symptoms of an illness (such as a cough, rash, fever, or diarrhea)
    • Anyone who thinks they may be getting sick
    • Anyone who could have recently been exposed to someone with an infectious illness
    • Children younger than 10 years old
  • All visitors must follow infection control precautions posted on your door, such as washing their hands, wearing a mask, and telling someone if they might be sick. We consider age 10 to be a reasonable age to be able to follow these requirements.
  • All visitors must clean their hands each time before they enter your room.
  • All visitors must remove their mask, gloves, and gown before leaving your room.
  • Visitors and caregivers must use the visitor’s restroom in the hallway, not the restroom in your room. This is to minimize the spread of bacteria in your room.
  • Fresh-cut flowers and live plants aren’t allowed in your room. Please tell family and friends not to bring or send them.

Exercise

Even though you’ll feel tired after your chemotherapy and transplant, you should still try to stay active and get out of bed every day. It’s important to be safe, so ask for help when you get up.

We encourage you to walk around the unit. You must wear a mask and gloves while you’re walking around the unit. Your nurse will tell you if you also need to wear an isolation gown. Don’t leave the floor for walking or exercise.

A physical therapist will evaluate you early during your hospitalization and prescribe an exercise program that’s right for you.

Communication

Each room has a call bell system that’s monitored 24 hours a day, 7 days a week. If you need something, please use your call bell and say exactly what you need so we can send the right member of your transplant team to help you.

Diet

Your transplant team will plan your diet. You’ll be given a menu and instructions on how to order your meals. Room service will deliver your meals to you.

In general, everyone having a transplant is placed on a low-microbial diet. Your clinical dietitian nutritionist will discuss this with you. For more information, read the resource Low-Microbial Diet.

If you keep kosher, have diabetes, or follow other specialty diets, tell your clinical dietitian nutritionist so that we can prepare your meals properly. Your clinical dietitian nutritionist is also available to help you plan your meals.

Showering

You’ll be expected to shower daily. Your patient care technician will be in your room when you’re showering to help you and to make sure you’re safe.

Mouth Care

It’s important to take good care of your mouth. This will help to reduce infections and mouth sores. Your nurse will go over this with you.

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What to Expect in the Outpatient BMT Clinic

During an outpatient transplant, you’ll get all of your care, including chemotherapy, transplant, and post-transplant care, in the Outpatient BMT Clinic. The clinic is located on the 4th floor of Memorial Hospital. You should arrive at the clinic at your scheduled time. You’ll visit the clinic every day and will only be admitted to the hospital if you need more care than can be given to you as an outpatient.

When you come to the clinic, you should wear comfortable clothing that allows for easy access to your tunneled catheter, such as shirts that open at the front, sweatshirts, or large t-shirts. Don’t wear clothing that’s hard to take off or put back on.

  • After you check in and are taken to a room, your transplant team will check your vital signs and weight and ask you about any symptoms you have. They will also examine you and check your blood counts, electrolyte levels, and kidney function.
  • After they examine you, you’ll wait in your room for your test results to be ready. This can take several hours. This is a good time for your caregiver to take a break, take some personal time, or run errands. You’ll be safe in the care of your transplant team. We highly recommend that your caregiver leave the hospital and take this time to relax. You’ll have an entertainment unit with a TV and a computer to pass the time. Your meals will be provided for you.
  • Once they get the results from your blood tests (sometimes called “labs”), your transplant team will make decisions about your care. The rest of your clinic visit that day will depend on your test results. Based on your test results:
    • Your healthcare provider may give you fluids through your IV.
    • Your healthcare provider may give you an infusion of platelets, red blood cells, or other blood components.
    • Your healthcare provider may change some of your medications.
    • Your treatment could be left as is.

You’ll stay in the clinic until all the treatments you need are completed, and then your caregiver will take you back to your nearby apartment or the 75th Street Residence. There, your caregiver will continue to monitor your temperature and how much liquids you drink.

For more information about the Outpatient BMT Clinic, read the resource About Your Appointments with the Red Team.

What to Bring to Clinic

When you come to clinic every day, bring the following:

  • A list of all prescription and nonprescription medications you’re taking, along with dosages and how often you take them. This should include patches, creams, vitamins, nutritional supplements, herbal products, and over-the-counter medications.
  • All the prescription medications you were told to take during the transplant period.
  • Your Outpatient Cellular Therapy Temperature and Liquid Intake Log. Your caregiver will use this to keep track of your temperature and liquid intake while you’re away from the clinic.
  • Books, newspapers, an audio player, a laptop, or tablet computer—whatever you need to pass the time.
  • A notebook to write down information and any questions you or your caregiver have.

What to Do in Your Home or Apartment

When you’re not in the Outpatient BMT Clinic, your caregiver will be responsible for caring for you.

Keep Track of Your Temperature

From the time you start receiving your chemotherapy, your caregiver must take your temperature and write it in the Outpatient Cellular Therapy Temperature and Liquid Intake Log. While you’re on your way there, call one of the numbers listed below.

  • If it’s between 8:00 am and 7:00 pm, call the Outpatient BMT Clinic at 212-639-3122.
  • If it’s after 7:00 pm, call 212-639-2000 and ask for the doctor covering bone marrow transplant.

Keep Track of How Much You Drink

Drink 2 liters (64 ounces) of liquids every day. Try to drink a small amount steadily throughout the day. Your caregiver must keep track of all the liquids you drink in the Outpatient Cellular Therapy Temperature and Liquid Intake Log.

Monitoring You for Bleeding

If you have any bleeding, always tell someone from your transplant team. If you notice that you’re bleeding and you’re not in the clinic, take the following steps right away:

  1. Apply direct pressure on the bleeding site. If you’re bleeding from your nose, also apply ice over the bridge of your nose.
  2. After applying pressure, follow the Outpatient Cellular Therapy Emergency Guide.
    • If it’s between 8:00 am and 7:00 pm, call the BMT Outpatient Clinic at 212-639-3122.
    • If it’s after 7:00 pm, call 212-639-2000 and ask for the doctor covering bone marrow transplant.

‌  
Call your doctor right away if you have any of the following things while you’re not in clinic:
 

  • Black bowel movements, blood in your stool, or rectal bleeding
  • Blood in your urine
  • A headache that doesn’t 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

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The 5 Phases of Transplant

There are 5 phases of transplant. They are:

  1. Conditioning
  2. Transplant day to engraftment
  3. Engraftment to day of discharge
  4. Early convalescence
  5. Late convalescence

These phases are described in the table below. They’re also described in more detail in the following pages.

The phases and time frames aren’t exact, and there’s some usually some overlap from one phase to the next. Everyone’s transplant timeline is unique.

  Description Time Period
Phase 1
Conditioning
  • You’ll get chemotherapy with or without radiation therapy. This will kill any cancer cells left in your body. It will also make room for new stem cells and suppress your immune system so you don’t reject the donor cells.
  • Phase 1 will be finished when you get the infusion of stem cells.
  • Day of hospital admission to Day 0 (transplant day)
  • The start date varies depending on which conditioning regimen you have
Phase 2
Transplant day to engraftment
  • You’ll feel the effects of your conditioning regimen.
  • Your white blood cell, red blood cell, and platelet counts will be low.
  • You may have diarrhea, nausea, vomiting, or mouth sores.
  • Your risk of getting an infection will be high.
  • You may need to have blood transfusions.
  • Day 0 to engraftment (blood count recovery)
  • Engraftment is usually between Day +10 and Day +30
Phase 3
Engraftment to day of discharge
  • Your blood counts will recover and gradually increase.
  • You’ll start the healing process.
  • Blood count recovery until discharge
Phase 4
Early convalescence
  • Your blood counts will be recovering, but your immune system still won’t be working properly.
  • You’ll still be at risk of getting an infection.
  • You’ll keep taking certain medications to prevent infection.
  • You’ll continue to be monitored closely by your transplant team.
  • Discharge to 1 year after transplant (or longer)
Phase 5
Late convalescence
  • Your immune system will be almost fully recovered and you’ll go back to your normal activities.
  • There will still be a chance that you could develop late complications, such as organ dysfunction or recurrence of the original disease.
  • You’ll start getting vaccinations you may have had as a child.
  • 1 year after transplant and onward

Phase 1: Conditioning

Conditioning is another name for the treatment you’ll get to get your body ready for the transplant. It’s done to kill any cancer cells that are still in your body.

During conditioning, you’ll get high doses of chemotherapy. The chemotherapy you get depends on your cancer type, treatments you’ve had before, and your treatment plan. You may also get radiation therapy along with the chemotherapy.

The day of your stem cell transplant is called Day 0. The days before transplant are negative numbers and days after transplant are positive numbers.

  • Conditioning starts before transplant, so the days of chemotherapy are assigned negative numbers (for example, Day -4, Day -3, Day -2, Day -1). Depending on your treatment plan, you may have 1 or more days of chemotherapy.
  • Every day after your transplant is referred to as a positive-numbered day (such as Day +1, Day +2).

 

 

Your nurse coordinator will work with you to plan your schedule, give you a treatment calendar, and tell you the date of your treatment. Your transplant team will usually know an approximate time for your transplant 1 day before stem cell infusion on Day 0.

Before you get 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 tunneled catheter (see Figure 4).

Figure 4. Getting chemotherapy through your tunneled catheter

Figure 4. Getting chemotherapy through your tunneled catheter

Side Effects of Conditioning

Conditioning kills cancer cells, but it also kills normal cells that are dividing. This causes side effects, including fatigue (feeling tired), low blood cell counts, temporary loss of immune function, hair loss, mouth sores, nausea, vomiting, diarrhea, and infertility (not being able to have children naturally).

Your transplant team will help you and your caregiver understand and get ready for these side effects. Before you start treatment, make a list of questions you would like to ask about these side effects. Talk through these questions with your caregiver and transplant team.

Fatigue

It’s normal for conditioning to cause fatigue. You should still try to stay as active as you can throughout your transplant. Limit the amount of time you spend in bed and walk a little every day. Your physical therapist will recommend activities for you.

Low white blood cell count (neutropenia) and risk for infection

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’re 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’ll temporarily lose your ability to make new neutrophils. Since your neutrophils aren’t being replaced, the number of neutrophils in your bloodstream will drop to a very low level. This will put you at risk for serious, life-threatening infections. Infections that happen in people with impaired immune systems are called opportunistic infections.

To help keep you from getting an infection, you’ll be started on prophylactic (PROH-fih-LAK-tik) medications. Prophylactic medications are given before there’s an infection. You’ll get medication to try to prevent bacterial infections (antibacterial), fungal infections (antifungal), and viruses (antiviral) early in your transplant journey. Even with these medications, you may still develop fevers in the first 2 weeks after transplant. Fever is an important sign of infection. If you develop a fever during transplant, your transplant team will do tests, such as blood and urine tests, to look for infection. X-rays or other radiology tests may also be done. You’ll be given stronger antibiotics through your tunneled catheter to help fight the infection. Most infections are treated effectively with antibiotics.

Avoiding sources of infection

During the transplant process, it’s critical to avoid possible sources of infection. This is easier said than done. You and your caregiver will need to be careful about seeing visitors, what you touch, and where you go. While your white blood cell count is low, you should try to avoid:

  • Shaking hands. If you shake hands with someone, use an alcohol-based hand sanitizer, like Purell®, afterward.
  • Contact with animals, including your pets. Pets can’t stay with you during your transplant.
  • Anyone who has signs of illness (such as cough, rash, fever, diarrhea) or who may have been exposed to a contagious disease.
  • Contact with soil or dirt. Don’t keep any plants in your room.

All visitors should be able to follow infection control precautions, including washing their hands, wearing a mask, and reporting symptoms of an illness. We consider age 10 to be the youngest age able to reliably follow these requirements.

You and your caregiver need to watch for visitors that have any signs of illness and ask them not to visit. We know it’s hard to tell friends and family not to visit. We recommend using an app or programs like Skype, Google Hangouts, or FaceTime to keep in touch with friends and family when you’re neutropenic.

Following a low-microbial diet

When you have a low white blood cell count, you’ll need to follow a low-microbial diet. This diet helps lower the risk of getting sick from food-borne illnesses.

A low-microbial diet contains fewer microbes (also called microorganisms) than what are usually found in food. Microbes are tiny living organisms, such as bacteria, viruses, and fungi (such as yeast and molds). Microbes attach to food and grow, but they often can’t be seen, smelled, or tasted. They can grow on any type of food but are more likely to grow on dairy products, food that isn’t refrigerated, undercooked food, certain fruits and vegetables, unpasteurized juices, and vegetable sprouts.

To lower your risk of getting an infection from foods:

  • Eat only foods that you know have been stored properly and are safe to eat.
  • Store food safely.
  • Handle food safely.
  • Eat only food that you know has been prepared and cooked following low-microbial diet guidelines.

Read the resource Low-Microbial Diet. Follow the guidelines very carefully when you or your caregiver is buying, handling, preparing, and cooking food. Also remember to clean your hands before meals and after using the bathroom.

Showering and bathing

While you’re neutropenic (have neutropenia), it’s very important to keep yourself clean.

Shower or bathe every day using Hibiclens® skin cleanser. Hibiclens contains a fast-acting antiseptic called chlorhexidine gluconate (CHG) that kills germs that live on your skin. It can work for up to 24 hours after using it. Using it will lower your risk of infection.

Instructions for using Hibiclens

  1. Use your normal shampoo to wash your hair. Rinse your head well.
  2. Use your normal soap to wash your face and genital area. Rinse your body well with arm water.
  3. Open the Hibiclens bottle. Pour some solution into your hand or a clean washcloth.
  4. Move away from the shower stream to avoid rinsing off the Hibiclens too soon.
  5. Rub the Hibiclens gently over your body from your neck to your feet. Don’t put the Hibiclens on your face or genital area.
  6. Move back into the shower stream to rinse off the Hibiclens with warm water.
  7. Dry yourself off with a clean towel after your shower.
  8. Don’t put on any lotion, cream, deodorant, makeup, powder, or perfume after your shower

Important points to remember when using Hibiclens

  • Don’t use Hibiclens on your head, face, eyes, ears, mouth, genital area, or on deep wounds. If you have a wound and aren’t sure if you should use Hibiclens on it, ask your doctor or nurse.
  • Don’t use regular soap, lotion, cream, powder, or deodorant after washing with Hibiclens.
  • If you have an irritation or allergic reaction when using Hibiclens, stop using it and call your doctor.

Caring for Your Mouth

While you’re neutropenic, you’ll need to change the way you brush your teeth and care for your mouth. This will help you avoid infection and bleeding. Follow these guidelines to take good care of your mouth:

  • You’ll be given a mouthwash to rinse your mouth before meals, after meals, and at bedtime. The number of rinses may be increased to every 2 hours, depending on how your mouth feels. Only use the mouthwash that your nurse gives you. Most store-bought mouthwashes contain alcohol, which can irritate and dry your mouth and throat.
  • Use an ultra soft toothbrush.
  • You can use toothpaste that you buy in the store.
  • Don’t use dental floss.
  • Avoid licking your lips. Licking your lips makes them more chapped and dry.
  • Apply a lip balm (such as 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.
  • Your doctor may prescribe an oral antifungal antibiotic to keep you from getting an infection in your mouth. Use it as instructed.
  • If your mouth becomes sensitive, avoid hot, spicy, acidic, or coarse foods. You may prefer soft or liquid food served cold or at room temperature.
  • If you have a lot of pain from mouth sores, your healthcare provider will give you pain medication.
Anemia (low red blood cell count)

Your red blood cells carry oxygen from your lungs to the tissues in all parts of your body. When you’re anemic (have anemia), your blood can’t carry oxygen as well. Some of the side effects of anemia include:

  • Fatigue (feeling more tired than usual)
  • Weakness
  • Fast heartbeat
  • Shortness of breath
  • Headache
  • Pale skin

If you have anemia, your doctor may prescribe a blood transfusion.

Low platelet count (thrombocytopenia)

Platelets are the cells that clump together to form a clot to help stop bleeding. After conditioning, the number of platelets in your blood will drop. This condition is called thrombocytopenia and increases your risk for bleeding. The most common areas of bleeding are your nose, mouth, skin, and gastrointestinal (GI) tract. You will get a platelet transfusion if your platelet counts drop below 10,000 or if you’re bleeding.

You’ll need to take these special precautions if your platelets become very low:

  • Avoid sharp objects, such as razors, scissors, and nail clippers. Only shave using an electric razor or shaver. Don’t use a razor that has a blade.
  • Don’t have manicures, pedicures, waxes, electrolysis, or tattoos.
  • Don’t have any dental work done.
  • Follow the guidelines in the “Caring for Your Mouth” section.
  • Don’t use rectal suppositories, enemas, or tampons.
  • Don’t take your temperature in your rectum.
  • If you’re straining to have bowel movements (poop), ask someone from your transplant team for a stool softener or laxative.
  • Avoid tight clothing or any clothing that you have to strain to put on or take off.

You should also avoid any activities that may result in injury. These include:

  • Contact sports
  • Climbing ladders
  • Strenuous exercise
  • Bicycling
  • Weight lifting

Some medications make it more difficult for your blood to clot and are very dangerous for anyone with a limited ability to clot and heal. Only take medications prescribed by your medical team. Don’t take:

  • Aspirin or products that contain aspirin
  • Nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen (Advil®)
  • Vitamin E

‌  Always tell your transplant team if you have any bleeding. Call your doctor if you develop any symptoms of bleeding, such as:

 

  • Easy bruising
  • Faint, tiny, pin-point red dots on your torso, arms, or legs
  • Vaginal spotting or heavy menstrual bleeding
  • Broken blood vessels in the whites of your eyes
  • Blood in your urine (pee)
  • Headache that doesn’t get better, blurred vision, or dizziness
  • Coughing up blood, vomiting blood, or a nosebleed that doesn’t stop after a few minutes with applied pressure or ice
  • Black stool or blood in your stool

Nausea and vomiting

Nausea and vomiting are common side effects of treatment. Chemotherapy acts on a 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 depends on the type of chemotherapy you get. You may have nausea during your conditioning, or it may be delayed for several hours or days.

You’ll be given medication to prevent and control nausea before your conditioning. These medications work differently for each person. If the medication you’re 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 transplant team will work with you to prevent and treat nausea and vomiting.

Diarrhea

Diarrhea is frequent, loose, watery bowel movements. It can also cause stomach cramps, gas, and pain in your abdomen (belly) or rectal area. Diarrhea can be caused by cancer treatments, medications, infection, stress, or other medical conditions. If you’re having diarrhea, you can become dehydrated due to loss of fluids and electrolytes.

If you have diarrhea for more than 24 hours, call your transplant team. Medications are available to treat diarrhea, but don’t take any over-the-counter medication until you have been evaluated by your transplant team.

Constipation

Constipation is having hard, dry bowel movements or having fewer bowel movements than usual. It happens when materials move too slowly through your large intestine. The normal length of time between bowel movements is different for everyone. If you’re having fewer bowel movements than usual 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.

Mouth sores (mucositis)

Conditioning kills the cells that line your mouth and digestive tract, resulting in irritation. This is known as mucositis. Mucositis can cause redness, swelling, tenderness, and sores on the lining of your mouth, tongue, and lips. You may have some mouth and throat discomfort that can make it hard to eat or swallow. Tell your nurse if you’re having any of these symptoms so they can be treated.

Hair loss

The chemotherapy that kills cancer cells also kills the cells that make your hair. Most people lose their hair during their transplant.

Losing your hair can be an unpleasant and upsetting experience. Many people choose to cut their hair short before their transplant to take control of this process and to lessen the shock of losing their hair. Talk this through with your caregiver, friends, and family.

Before your transplant 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.

You can get a wig 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

Conditioning can cause skin changes such as increased dryness, flaking, discoloration, and darkening. When you bathe, use a body soap that’s 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 you’re outside, 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, read the resource Skin Care Guidelines While You Are Receiving Radiation Therapy.

Rest Day

Some conditioning regimens include a rest day between your chemotherapy and your transplant day. This rest day allows time for the chemotherapy to work and then leave your body. This is so there will be no trace of chemotherapy left in your body to harm the newly transplanted stem cells.

Some conditioning regimens don’t have a rest day. This will be reviewed with you by your clinical nurse coordinator and noted on the calendar you’re given before your admission.

Transplant Day

After you finish your conditioning regimen, you will get your stem cell infusion—your transplant.

On Day 0 (transplant day), the stem cells that were collected and stored before transplant will be reinfused into your bloodstream through your tunneled catheter. The stem cells will be pushed from a large syringe or transfused from a bag, like a blood transfusion. This will take place at the bedside (while you’re in your hospital bed). After they’re infused, the stem cells will travel to your bone marrow and make new blood cells.

Your stem cell infusion
  • You’ll be given medications about 30 minutes before your transplant to help reduce side effects that you may have during the infusion.
  • Your stem cells will be brought to the bedside.
  • Your stem cells will be infused through your tunneled catheter. You’ll be closely monitored and your vital signs will be checked often during and after the infusion.
  • You may have some side effects during and after your infusion. Common side effects are nausea, vomiting, a tickle in your throat, or a cough. Other less common side effects that can happen include fever, chills, and low blood pressure.

It’s important that you communicate with your transplant team and caregiver during your transplant. Let your transplant team know how you’re feeling and tell them if you have any side effects. If you do have side effects, your transplant team will treat them.

During and after your transplant, you may notice a strong, garlic-like taste in your mouth. Your urine, sweat, and skin may also have a garlic-like smell. You may not notice the smell, but those around you will. This smell is caused by the preservative used to store your stem cells and will gradually go away over 1 to 2 days. The Nutrition Department will give you lemons to cut up and use as safe, natural air fresheners.

Your urine may look discolored, ranging from pink-tinged to bloody. This can last for 24 hours after your stem cells are infused. This color change is caused by your body getting rid of extra red blood cells that may be with the stem cell infusion but aren’t needed.

Phase 2: Transplant Day to Engraftment

Once you’ve had your transplant, you’ll enter a period of watching and waiting until your blood counts recover (called engraftment). During this waiting period, your old blood cells will die and your blood counts will drop to their lowest levels. At some point, usually around day +5, your immune system won’t work at all until engraftment. During this time you’ll be at very high risk of getting an infection. You’ll need to avoid sources of infection by cleaning your hands regularly and eating a low-microbial diet. In addition to infections, other potential complications during this waiting period include anemia, bleeding, and continued or new side effects from conditioning. The management of these side effects is as described in the “Phase 1: Conditioning” section.

Here’s a list of things that will happen during this phase:

  • You will have testing. You’ll have blood tests and other tests as needed to monitor your progress. You’ll have blood drawn every day.
  • You may continue to have side effects from the conditioning. You’ll be given medication to help manage the side effects and make you more comfortable.
  • You will follow a low-microbial diet. Because you’re neutropenic, you’ll follow a diet that contains a low number of potentially harmful microbes.
  • You may get transfusions. You may need to get a blood transfusion to boost the numbers of red blood cells and platelets in your bloodstream.
  • Your blood counts will start to recover. Over time, as the stem cells engraft and start to make new blood cells, your blood counts will get higher.
  • You will stay physically active. You’ll 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.

Risk of Infection

You’ll be at risk for bacterial, fungal, and viral infections for several months after your transplant. They’re a major risk in the early recovery period until your new bone marrow grows and makes white blood cells to fight infection. You’ll still be at risk for some infections while your immune system recovers during the first year after your transplant.

Fever is one important sign of infection. If you develop a fever, you’ll have blood and urine tests to check for infection. You may also have X-rays or other radiology studies. You’ll be given strong IV antibiotics to help your body fight the infection. Nearly everyone will develop fever during the first 2 weeks after their transplant. Most infections are treated successfully with antibiotics.

Your doctors and nurses will try to keep you from getting infections. You’ll likely be given medications that are used to treat infections, which can help prevent infections in people who have had a transplant. You’ll get 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. You’ll also get antifungal medication to prevent fungal infection.

People whose immune systems aren’t working well can get infections that wouldn’t happen in healthy people. These are called opportunistic infections. You may need medication to help protect you from these infections. You’ll be at risk for them until your white blood cell count and immune system return to normal.

Bleeding

Your platelet count will be low. Since platelets form blood clots, you’ll be at risk for bleeding. The mucous membranes of your nose, mouth, skin, and gastrointestinal (GI) tract are most commonly affected. You’ll have platelet transfusions if your count falls below 10,000 or if you have any bleeding, of if they’re needed for another reason (such as having an invasive procedure).

Anemia

When your red blood cell count is low, you might have weakness and fatigue. Your nurse will help you with your daily activities if you need help. You’ll be given red blood cell transfusions as needed. These and all other blood products will be irradiated (exposed to radiation) to prevent harmful side effects.

Phase 3: Engraftment to Day of Discharge

Engraftment

After your stem cells are infused into your bloodstream, they travel to and enter the bone marrow. Once they’re there, they start to divide and create healthy new blood cells. This process is called engraftment. Engraftment usually takes about 10 to 14 days, but it’s different depending on your disease and treatment. As engraftment happens, the number of white blood cells, red blood cells, and platelets in your blood will increase. Red blood cells and platelets usually take a little longer to recover than white blood cells.

During engraftment, you may have bone pain, a rash, and fevers. These are common, and we can usually take care of them easily. Once your transplant team decides that your symptoms are well-controlled or gone, you’ll be discharged and resume care with your primary BMT attending doctor in clinic.

Before Going Home

It’s important for you to take part in planning your care after discharge. Your transplant team will work with you before you go home to make plans for your follow-up care.

Medical alert jewelry

Before you leave the hospital, you will need to order a medical alert bracelet or necklace. Your transplant team will help you. Examples of medical alert jewelry companies include MedicAlert® (www.medicalert.org) and ROAD iD (www.roadid.com).

Your bracelet or necklace should be engraved with the statements “Autologous stem cell transplant” and “Irradiated cellular blood components and CMV-safe blood components only.” This will let paramedics or hospital staff know what to do if you’re in an accident and can’t tell them yourself.

Leaving the Hospital

Even though you may be very happy and feel ready to be discharged, you might also feel nervous. It’s normal to have some worries and concerns as you get closer to your discharge. After you leave, you and your family will need to manage your care. Feeling confident and comfortable doing this takes time. During your follow-up visits, your social worker can help you get the services you need and give you emotional support.

After you’re discharged, it will take time to get used to living at home again. You may find that the things you need to do to keep from getting sick add some stress to your life. Feeling a sense of balance and comfort again will come with time. Try to stay as calm and confident as you can.

Your recovery after transplant will be gradual. You probably won’t feel the way you did before your illness for a while. You may feel tired and weak, have a smaller appetite, and notice changes in the way things taste and smell. It will also take time for you to get your strength back and go back to doing the activities you enjoyed before your illness and transplant.

Phase 4: Early Convalescence

This phase of your recovery extends over a long period of time—from discharge to 1 year after your transplant or longer. It’s important to remember that, even though your blood counts are coming back up to the normal range, your immune system is still very immature. You’ll still need to take medications and follow precautions to keep yourself healthy and avoid infection.

The time frames given here are general guidelines. Your transplant team may give you a more exact time frame.

Preventing Infection

It usually takes 3 to 12 months for your immune system to recover from your transplant. The first year after transplant is like your first year of life as a newborn baby. During this time, you’re at risk for infection. Your transplant team will check your blood cell counts to see how well your immune system is working. Depending on your blood cell counts, they may make changes or additions to the guidelines below.

Here are a few general tips to keep from getting an infection:

  • Wash your hands often with antibacterial soap and water or an alcohol-based hand sanitizer.
  • Stay away from people who are sick or have recently been sick.
  • Wear a mask while you’re in public or if you may be near strangers (if your transplant team asks you to).

The following things can be a sign of infection. Call your doctor’s office right away if you have:

  • A fever of 100.4 °F (38.0 °C) or higher.
    • Don’t take acetaminophen (Tylenol®) unless your healthcare provider tells you to.
    • You don’t have to take your temperature every day. But, check it regularly if you don’t feel well.
  • Flushed (red, warm-feeling) skin, sweating, or shaking chills.
  • Coughing, sneezing, runny nose, shortness of breath, or chest discomfort.
  • Redness, swelling, or pain in your throat, eyes, ears, skin, joints, or abdomen.
  • Blurred vision or other changes in your ability to see clearly.
  • Frequent urination (peeing), a burning feeling when you urinate, or both.
  • Irritation in your rectum, including burning and pain.
  • A rash.
  • Small blisters, similar to cold sores, around your mouth or on any other parts of your body.
  • Trouble flushing your tunneled chest catheter, if you have one.
  • Chills while or after flushing your tunneled chest catheter, if you have one.

You can catch viruses more easily until your immune system is back to normal. One of these is the virus that causes chickenpox and shingles. If you’re exposed to chickenpox or shingles, call your transplant doctor or nurse right away. You will need to come in so they can see if you need treatment.

It’s also possible for viruses that you’ve had in the past to reactivate. For example, the virus that causes chickenpox and shingles can reactivate if you had chickenpox as a child. This often starts as pain in your skin with pimples or fluid-filled blisters. If you develop blisters, they can be tiny or as large as a pencil eraser. They may be painful, itch, or burn. If you have any of these symptoms, call your doctor or nurse right away so you can be treated.

Once your immune system has recovered, you’ll start getting your childhood vaccines. This usually starts about 1 year after your transplant, but your transplant team will decide when the timing is right for you. Read the “Phase 5: Late Convalescence” section for more information.

There are certain things you can do to lower your chance of getting an infection. Below, we give some guidelines for you to follow. Your transplant team may give you more instructions or changes to the guidelines below. Always follow your transplant team’s instructions.

Personal hygiene

While you’re recovering from your transplant, it’s very important to keep yourself clean. Doing this can help prevent infection. Follow the guidelines below.

  • While you’re recovering from your transplant, it’s very important to keep yourself clean. Doing this can help prevent infection. Follow the guidelines below.

  • Shower or bathe every day.
    • Use a mild soap, such as Dove® or Caress®. Don’t use Ivory® or a deodorant soap. 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, don’t use 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. Don’t use lotions containing alcohol. They will make your skin more dry.
  • Limit your time in direct sunlight.
    • Your skin will be more sensitive and may burn more easily after your transplant. The medications you’re taking may add to this. Whenever you’re in the sun, protect your skin with a sunblock 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. Being in the sun for a long time may also reactivate cold sores (herpes simplex virus).
  • You can wear contact lenses, but make sure that they’re cleaned well before you put them in. Don’t reuse cleaning solution. Be sure to throw cleaning solutions away when they expire. If your eyes are dry, use moisturizing drops.
  • You can wear makeup, but buy all new products after your transplant.
  • New nails will grow and replace your old nails. This will happen gradually over 3 to 4 months after your transplant. Don’t 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 tunneled catheter, don’t let it soak in water while you bathe. Read the resource About Your Tunneled Catheter for more information.
  • Don’t 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 transplant doctor.

Hair usually starts to grow back about 3 months after the transplant. It’s possible that your hair may grow back with a different texture. Although it’s rare, hair loss can happen months or years after your transplant.

Mouth care

Keep following the instructions in the “Caring for Your Mouth” section until your transplant team tells you that can start using an ultra soft toothbrush. You can brush your teeth with an ultra soft toothbrush if:

  • Your absolute neutrophil count (ANC) is higher than 500 (sometimes 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, 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 well 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 keep your mouth from becoming reinfected. Tell your doctor or nurse if you have pain or discomfort in your mouth.

You may have mouth dryness for 3 to 4 months or longer after your transplant. Don’t use store-bought, alcohol-based mouthwashes or hydrogen peroxide. They’ll dry and irritate your mouth. Instead, use a mild saltwater 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 help.

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. Follow the instructions on the mouthwash bottle.

Caring for your tunneled catheter

It’s just as important to keep your tunneled catheter clean after you go home as it was while you were in the hospital. If you go home with a tunneled catheter, your nurse will teach you how to care for it at home. You’ll have a chance to practice with your nurse watching. Read the resource About Your Tunneled Catheter for more information.

Your home environment

Keep your home as free of dirt and dust as possible. But, you shouldn’t go to extremes. Don’t repaint your walls or put down new carpets. In fact, you shouldn’t be around any renovations or construction until your transplant team tells you it’s okay. This includes those in process and those done within the past 3 months.

Stay out of musty areas where mold might grow, such as a damp basement. You can use an air filtration system in your home, but you don’t need to.

Don’t use a humidifier. Bacteria and mold grow easily in it. A pan of water placed near a heat source may help in the winter. 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’s fine for you to cook, wash dishes, or iron. Keep your bathroom very clean, especially the tub and toilet. Use a disinfectant regularly. It’s best for someone else to do this.

Wash your eating utensils, towels, and linens carefully. They don’t 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 a 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.

You can have plants in your home. But, for the first few months after your transplant:

  • Don’t touch the soil from household plants unless you wear gloves and a mask.
  • Don’t touch the water in a vase of flowers. Someone else should change the water in the vases daily.
Pets and animals

Animals can carry diseases. They may put you at greater risk for infection while your immune system is recovering. You can have a pet in your home and touch it, but it’s best that you don’t have close physical contact. For example, don’t hold the animal in your lap. Don’t touch the animal’s saliva or feces. Be sure to protect yourself from bites or scratches.

Don’t handle or care for birds, lizards, snakes, turtles, hamsters, or other rodents while you’re recovering. If you have an aquarium and you have to clean it yourself, 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 booster shots.
  • Have your pet’s veterinarian check their stool for parasites every year.
  • If you have a cat, get it tested for feline leukemia and toxoplasmosis every year.
  • 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). Talk with your pet’s veterinarian about using a flea and tick collar.
  • Don’t 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 you can. This is to help keep them from getting diseases from other animals.
  • Don’t let pets in your bed.

If you plan to get a pet after your transplant, it’s best that you choose a healthy dog or cat that’s 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 people in your immediate family. But, don’t 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’s sick. Your family members and close friends should get a yearly flu shot.

You can have visitors, but limit them to small groups. Don’t visit with anyone who has:

  • A cold.
  • Chickenpox.
  • Recently been exposed to chickenpox.
  • Recently been exposed to herpes, shingles, or any other type of virus or infection.
  • Recently got a vaccine with a live virus (such as varicella or rotavirus). There are very few of these, but if someone in your household needs one, their doctor should be told that you’re immune suppressed and live in the same household.

‌  Call your doctor right away if you or a family member is exposed to chickenpox, shingles, measles, or German measles (rubella).


Outside your home

Walking is an excellent way to regain your strength and endurance. Take regular walks outside, but avoid dirty areas and construction sites. During the first few months after your transplant, avoid the following places when they’re crowded:

  • Supermarkets
  • Shopping malls
  • Movie theaters
  • Schools
  • Restaurants
  • Public transportation
  • Places of worship (such as churches or synagogues)

You can go to these places at off-peak hours when there are fewer people.

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 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 the pool is chlorinated.

Don’t swim in lakes, rivers, or crowded pools until your immune system has recovered. Don’t swim if your tunneled catheter is still in place.

Bleeding

Platelets are blood cells that help form clots and control bleeding. When your platelet count is low, you’re at risk for bleeding. Many people are discharged with a low platelet count. It can take weeks or months for your body to make enough platelets so your count returns to normal. You may need to have platelet transfusions.

Signs of a low platelet count include skin changes, bleeding, or both. Skin changes may include a lot of bruising or petechiae (peh-TEE-kee-ee). These are tiny, purplish-red spots on the skin that don’t 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’re discharged with any of these symptoms and they increase in amount or frequency, call your doctor. If you haven’t had any of these symptoms and suddenly develop them, call your doctor. It may mean that there’s a change in your platelet count.

If you have an injury that causes bleeding, don’t panic. Stay 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. Press firmly. Keep pressing to apply pressure until the bleeding stops. If the bleeding doesn’t stop, 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. Don’t 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 doesn’t stop, keep squeezing 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’re in an accident, you may need blood or blood products. They should be irradiated to 3,000 rads. This is to keep transfused blood from causing GVHD.
    • Wear your medical alert jewelry at all times. It gives the doctor who will be treating you this information. Read the “Medical alert jewelry” section for information about what to write on your medical alert jewelry.
    • If you’re admitted to another hospital, have the doctor call MSK right away for guidelines on blood products.

If your platelet count is below 50,000 (50), follow the guidelines below.

  • Use an electric razor when shaving.
  • Use a soft-bristle toothbrush or an oral irrigator (such as a WaterPic®) to prevent gum bleeding. Don’t use dental floss.
  • Don’t take aspirin, products that have aspirin, or aspirin-like medications, such as such as ibuprofen (Advil®) or naproxen (Aleve®). For more information, read the section “Common Medications to Avoid.”
  • Avoid blowing your nose forcefully.
  • If you’re 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, talk with your doctor.

Resuming Your Activities

Daily activities

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 normal. Each week, you should get more of your strength back.

Around the 3rd month after your transplant, your hair will start growing more quickly. You may feel well enough to start going back to your usual level of activity. From this point on, you’ll probably feel better and better. For most people, however, the first 2 to 3 months to 1 year after transplant remain a time of recovery.

Exercise

Most people find it takes time to regain their strength. It may be helpful to follow a regular exercise plan. When you start 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.

Don’t play contact sports or ski until your platelet count is over 100,000.

Hobbies

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 go back 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 things. Some people may feel ready to return right away, while others feel worried after being away for so long. It may help to start 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 actually doing it.

Making the transition back to your usual lifestyle can be hard. Some people have talked about feelings related to changes in their appearance, such as hair loss. Others have trouble concentrating or maintaining their attention span. Many can’t keep up their former pace. Your transplant team is here to talk with you about going back to school or work. You can talk to a social worker, nurse, psychiatrist, or your doctor. We can work with you to find ways to make your transition easier.

Traveling

For the first 100 days after the day of your transplant, avoid traveling more than about 1 hour away from MSK.

If you plan to travel by plane, talk 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.

Sexual Health

Before you go home, ask your doctor when it’s safe for you to have sexual activity. It’s important for you and your partner to have answers to your questions. If new questions come up, you can discuss them during your follow-up visits.

Protecting yourself during sexual activity

Until your doctor tells you that your blood counts and immune system have recovered:

  • When your platelet counts are low (less than 50,000)
    • Avoid sex that involves penetration or contact with mucous membranes. This includes vaginal, oral, and anal sex, and inserting fingers, vibrators, or other sex toys into your vagina or anus. Hugging, cuddling, gentle touching, and kissing skin are other ways you can be intimate with your partner during this time.
  • When your platelet count is above 50,000:
    • Use latex condoms each time you have vaginal, oral, or anal sex.
    • Use a barrier device (condoms or dental dams) any time your partner’s vaginal secretions or semen could enter your mouth.
    • Don’t have any sexual activity that could expose your mouth to feces.
    • Avoid sex that involves contact with mucous membranes if a genital infection is suspected or present in either you or your partner.

For more information about being sexually active during and after treatment, talk with a member of your transplant team, or ask for the following resources:

Information for women

After your transplant, you may have:

  • Fewer menstrual periods
  • No menstrual periods
  • Vaginal dryness and discomfort

Talk with your BMT doctor before using the products below.

Vaginal moisturizers are nonhormonal, over-the-counter products that help relieve vaginal dryness and discomfort. They’re 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’re used to supplement a woman’s own lubrication and minimize dryness and pain during sexual activity. You can use these lubricants to make sexual activities more comfortable and pleasurable. Examples are Astroglide®, K-Y® Jelly, and Pjur® Woman Bodyglide (a silicone-based lubricant). For more information, read the resource Improving Your Vulvovaginal 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, your doctor can refer you to a specialist in our Female Sexual Medicine and Women’s Health Program. You can also contact the program by calling 646-888-5076.

Information for men

Some men have 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 have erectile dysfunction (ED) after their transplant. ED can be treated with medication, such as sildenafil citrate (Viagra®) or tadalafil (Cialis®). There are many other ways to treat ED. Your doctor can refer you to a specialist in our Male Sexual and Reproductive Medicine Program. You can also contact the program by calling 646-888-6024.

Drinking Alcohol and Using Tobacco

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’re taking medications that can affect your liver. Don’t drink alcohol until your doctor tells you it’s safe.

Never smoke:

  • Cigarettes
  • Cigars
  • Marijuana
  • 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.

Follow-up Care

Your follow-up visits will be scheduled before you’re discharged. In general, you’ll 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’re doing well.

Before your visits, make a list of any medications that need to be refilled. If you’re going to run out of any medications before your follow-up visit, tell your doctor before your appointment. You’ll be given prescriptions during your visit to be filled either at MSK or your local pharmacy.

When you come to the clinic for your follow-up visits, always wear a surgical mask. Bring a list of all the medications you’re taking and the dosages of each one. Some people find it helpful to bring a list of questions that have come up since the last visit.

You’ll have blood tests to check your blood counts, electrolyte levels, and liver and kidney function. Bone marrow studies will be done according to your disease and treatment course.

Some diseases will require lumbar punctures (spinal taps) after transplant. A lumbar puncture lets your doctor 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 IV treatments such as antibiotics and blood transfusions. If you do, your doctor or nurse will tell you how long and how often you’ll need them. These appointments will usually be scheduled at the same time as your follow-up visits.

At some point after your transplant, you might be referred to our BMT Survivorship clinic. There, you’ll see a survivorship NP. A survivorship NP is part of your transplant team. They work closely with your doctors and nurses to help with your recovery. This NP will also communicate directly with your primary care provider so information about your transplant is included in your overall healthcare.

Dental care

After you have recovered from your transplant, go to your local dentist for routine checks. If you need extensive dental work, ask your transplant doctor what you should do. They’ll 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 pamidronate (Aredia®) or zoledronic acid (Zometa®)
  • Jaw tightness
  • Toothaches
  • Discoloration at your gum line
  • Receding gums

Common Medications to Avoid

Don’t take aspirin, any medications containing aspirin, or nonsteroidal anti-inflammatory drugs (NSAIDs) until your doctor gives you other instructions. For a list of these medications, read the resource Common Medications Containing Aspirin and Other Nonsteroidal Anti-inflammatory Drugs (NSAIDs).

Check the label of any over-the-counter medications that you’re thinking of taking to make sure they don’t contain ingredients you should avoid. If you aren’t sure if a medication is safe to take, ask your transplant team.

Don’t take any herbal supplements or home remedies without talking to your transplant team first.

Phase 5: Late Convalescence

Relapse

Many people are worried that their cancer will come back. Your risk is higher if you had your transplant when you were in an advanced stage of disease or you weren’t in remission. Your doctor will follow you closely to watch for any sign of relapse.

Continued Follow-up Care

Immunizations

Having a transplant takes away all the immunity you got during your life before transplant. This includes the vaccines you received as a child. Because of this, you need to be re-vaccinated with childhood vaccines once your immune system has recovered. This usually happens about 1 year after transplant.

Once it’s safe for you to receive vaccines, you’ll be scheduled for them at MSK. This is because it may be difficult for your primary care doctor to get the vaccines. You’ll get only “killed” vaccines first, and if you respond to those, you’ll then get “partially killed” vaccines, such as for measles and shingles.

Eye exams

Vision changes, sometimes due to cataracts, are fairly common after transplant. See an eye doctor if you develop any of the following symptoms:

  • Cloudy, blurry, foggy, or filmy vision
  • 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 might 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. Your vision can change during the recovery process.

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Educational Resources

This section contains the educational resources we referred to throughout this guide. You can find them online, or you can ask a member of your transplant team. You can also search for more educational materials on the Patient and Caregiver Education website, www.mskcc.org/pe.

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