Welcome & Overview
We would like to welcome you to the Adult Stem Cell Transplant program at Memorial Sloan Kettering (MSK). We understand that you and your friends and family may feel overwhelmed, and we want you to know that were here to help you throughout this process.
This guide is designed to help you and those who care for you understand what to expect throughout your transplant journey. The information in this guide is not meant to replace the information that your transplant team will teach you, but it will be a resource for you to refer to throughout the process. In this guide we will explain some of the challenges that you might have over the course of your transplant and recovery, but it doesnt mean youll have all of them. Because of that, you shouldnt compare yourself to other people you may know or have heard of that had a stem cell transplant. Each person is unique.
Autologous stem cell transplants have been done for many decades. Advances in research have resulted in significant improvements over that time. However, it is still a complex procedure that requires a commitment from your transplant team, but just as importantly, on the part of you and those who care for you.
Autologous transplants can be done safely in the hospital, however for some people, transplants can also be done outpatient. Outpatient transplants have been shown to be feasible and safe, while improving the satisfaction and experience of people having transplant. An outpatient transplant is not right for everyone, however. Your doctor will talk with you about whether an outpatient transplant might be an option for you. You will read about both in this guide.
Preparing for your transplant is the first part of your journey. If you have an inpatient transplant, you will be in the hospital 24 hours a day before, during, and for some time right after your transplant. If you have an outpatient transplant, you and your caregiver(s) will stay at an apartment near the hospital approved by your doctor or at a furnished apartment at the 75th Street Residence.
Having a transplant is a long process. At MSK we have a large, integrated healthcare team that will care for you as you go through each phase. We understand that you may have many emotional changes during the transplant process. Your transplant team includes many providers, including social workers, chaplains, psychiatrists, and members of our Integrative Medicine Service. All of these healthcare providers are available to support and help you and your caregiver(s) cope with what you may feel.
During your transplant journey, its very important that you communicate clearly with your transplant team and your caregiver about how youre feeling. If anything is bothering you, even if it seems minor, tell a member of your transplant team. Whether its physical or emotional, its very important not to let things build up, otherwise minor issues can become more of a problem. The more information you communicate to your transplant team, the more they can help you. There is usually something that they can do to make you feel more comfortable.
Below are some of the ways you can communicate with your transplant team:
If its between 9:00 am and 5:00 pm, call your doctors office. If its after 5:00 pm, call 212-639-2000 and ask for the doctor covering bone marrow transplant. If youre having an outpatient transplant and its between 9:00 am and 7:00 pm, call the Outpatient BMT Clinic at 212-639-3122. If youre having an outpatient transplant and its after 7:00 pm call 212-639-2000 and ask for the doctor covering bone marrow transplant.If youre inpatient, talk with any member of your inpatient healthcare team or ask to speak with the Charge Nurse, Clinical Nurse Specialist, or Nurse Leader. While youre inpatient its important to talk with your inpatient team, not call the outpatient office. Also, you should choose 1 caregiver to call the nursing station for updates, then that person can relay the information to the rest of your friends and family.We also encourage you to use our patient portal, MyMSK. You can use MyMSK to check your appointment schedule, request a prescription refill, contact a healthcare provider, and find educational information. MyMSK should never be used to communicate any symptoms to your healthcare team. Instructions about how to enroll in MyMSK are printed on the bottom of your appointment print out, or you can find them on our website at mymskcc.org. There is also a mobile app, MobileMyMSK, which you can download to your smart phone.
There is a lot of information in this guide to read and understand. Read the entire guide at least once, including the additional resources included in the back of the guide. You may find it easier to read a few sections at a time, rather than trying to read the entire guide at one time. We encourage you to refer to this guide as your treatment progresses.
We recommend that you highlight or write notes as you go through this guide on anything that you dont understand or have a question about. There is no such thing as a silly question, so please ask about anything that is on your mind.
Weve done our best to limit the number of medical terms in this guide. However, there are some words that you will need to understand. With this in mind, weve included a glossary of useful terms at the back of this guide.
Your bone marrow is in the spaces in the center of the larger bones in your body your hip, breastbone, and pelvis. Its where blood cells are made. All blood cells originate from stem cells.
Blood supplies your body with the nutrients and other substances your body needs. Blood also has different types of cells with important functions. Blood cells belong to 1 of 3 major categories: white blood cells, red blood cells, and platelets.
Stem cells are baby (immature) cells that can become any kind of blood cell. Stem cells divide constantly to become different types of blood cells in your blood, replacing older blood cells. A very small number of stem cells circulate in your blood. Stem cells can be collected during a process called apheresis (A-fer-E-sis).
An autologous stem cell transplant has been recommended for you because your doctor feels its the best way to treat your specific disease. Autologous means from yourself.
In an autologous transplant, your stem cells will be collected (harvested) from you, and then frozen. You will then receive high doses of chemotherapy or a combination of chemotherapy and radiation. The high-dose treatment kills cancer cells, but also eliminates the blood-producing stem cells that are left in the bone marrow. Afterward, the stem cells that were collected are given (transplanted) back to you. This allows your bone marrow to make new blood cells.
Currently, most transplants are done an inpatient; however, some are done an outpatient. Your doctor will determine if you are a candidate and discuss your options with you.
During your first visit, youll meet with your doctor and other members of your transplant team. Your doctor will take a complete medical and surgical history, do a physical exam, and discuss what he or she thinks is the best treatment plan for you. This plan may also be discussed with other transplant doctors to ensure that there is agreement on what the best plan is for your specific situation. Your doctor also might discuss inpatient and outpatient transplants options.
During this time, youll make practical, physical, and emotional preparations for your transplant. Here is a list of things that will happen and things that you may need to do to get ready:
For men
For women
A team of healthcare providers will care for you throughout your treatment. You will meet many as you progress through your transplant journey. You might not meet some members, such as your doctors office assistant, laboratory staff, or our service coordinator, but know that they are all working to help you. Below is a list of your team members and their roles.
Your caregiver will be an important part of your care during your transplant.
Everyone having a transplant will benefit from having support from a caregiver before, during, and after a transplant. The caregiver is usually a family member or a close friend available to help with basic day-to-day medical and practical issues, as well as provide emotional support.
To have an outpatient transplant, you must have a clear caregiver plan. There are no exceptions. Your transplant team will review this with you. Your caregiver must be available 24 hours a day, 7 days a week during the transplant. Your caregiver will receive specific instructions from your transplant team about what a caregiver needs to do. Some of these responsibilities will include the tasks explained below.
During an outpatient transplant, being a caregiver is a full-time, 24-hour,7-day a weekresponsibility. It is tiring, demanding, and stressful, especially if your condition, schedule, or treatment changes.
During your transplant, your caregiver must take you to and from your daily visits to the Outpatient BMT Clinic. They may not be able to work and will need to stay with you for most of the day and night. While you are in the Outpatient BMT Clinic for daily visits, your caregiver can take some personal time. This is something we strongly recommend.
It is important for your caregiver to maintain a positive attitude, stay calm, and be flexible while providing you with the support and encouragement you need. Its important for you to understand that the caregiver role is challenging and that your caregiver may at times feel overwhelmed by the responsibilities.
Take time now to think about who you would like to be your caregiver. It should be someone you trust and who can take the time to care for you. Your caregiver should be someone who can offer you the practical and emotional support you need. If you dont have just 1 person to serve as your caregiver, then its okay to have more than 1 person share the role. However, its best to limit the number of caregivers to 1 or 2 people.
If your caregiver becomes sick or shows any signs of a cold or flu (cough, temperature, sore throat) 1 week before or any time during your transplant, tell your transplant team right away.
Caregivers can experience physical, emotional, spiritual, and financial distress. Resources and support are available to help manage the many responsibilities that come with caring for a person having a transplant. For support resources and information, contact your transplant social worker. We have included a useful resource titled Caregivers Guide for Bone Marrow/Stem Cell Transplant with this guide.
At MSK, our Caregivers Clinic provides support specifically for caregivers who are having difficulty coping with the demands of being a caregiver. For more information, call Dr. Allison Applebaum at 646-888-0020 or go to: http://www.mskcc.org/cancer-care/doctor/allison-applebaum
Whether youre having an inpatient or outpatient transplant, being apart from your children will be difficult for you and your family. We strongly recommend that you talk with your social worker about your concerns and develop a plan to maintain strong ties to your children during your transplant.
Below are some things that others have done to remain in contact with their children during their transplant:
We know that nothing will replace physical contact between you and your children, but we strongly encourage you to use all of the technology thats available to maintain a strong bond with them while you are away.
For more help maintaining your relationship with your children, contact your social worker.
Before you become a transplant candidate, your overall physical condition will be evaluated. You will need to make several trips to MSK to have tests. We often refer to this as the work-up or restaging period. During the work-up, you will need to have some, but not necessarily all, of the following tests:
These tests are usually done within 30 days of your transplant (Day -30 onwards), but the pretransplant evaluation can sometimes take longer. Your doctor or nurse will explain any other tests that you may need. Your transplant team will work with you and your caregiver to schedule the tests.
The results of the tests will be used to plan your treatment and make sure that it is safe to start your treatment.
Once your pretransplant evaluation has been done and you have the date of your transplant, you will have your preadmission appointment. This appointment is usually 1 to 2 weeks before you are admitted to the hospital. At this appointment:
Between your preadmission appointment and when youre admitted to the hospital, it is very important to call your transplant doctors office if you or anyone in your home have any of the following:
Your doctor will decide whether your admission for transplant should be delayed. It could be very dangerous to start your chemotherapy while you have an infection, even if its just a cold. This is because your immune system will not be able to fight the infection.
You will need a CVC during your transplant. A CVC is a tube that is usually inserted into a large vein (see Figure 2) in the upper chest area (see Figure 3). On the outside of your body, the catheter divides into 2 or 3 smaller tubes, called lumens. A CVC allows your transplant team to transfuse your stem cells, take your blood, and give you fluids, electrolytes, blood transfusions, chemotherapy, and other medications without having to stick you multiple times with a needle. Having a CVC will make your treatment during transplant much more comfortable. The CVC is usually removed 2 to 3 weeks after your transplant.
You will have your CVC placed in MSKs Interventional Radiology department at Memorial Hospital. Your clinical nurse coordinator will discuss the details of having your CVC placed. If you are outpatient when you have your CVC placed, someone over the age of 18 must take you home. For more information, read the resource Instructions for Interventional Radiology Procedures, located at the back of this guide. For information about how to care for your CVC, read Caring for Your Central Venous Catheter, located at the back of this guide.
The information in this section describes some basic information of what to expect if you are admitted to the hospital during any part of your transplant. This applies whether you have an inpatient or outpatient transplant.
There are 2 transplant units in the hospital. The nurses on each unit are specially trained to care for people having transplants, and all the same guidelines are followed on both floors. You may need to change your room or floor while youre in the hospital, however we try to avoid this as much as possible.
Your primary nursing team will care for you during your hospital stay. Nurses typically work 12-hour shifts, starting at either 7:00 am or 7:00 pm. During this time, your nurse will communicate the information about what has happened with you and your care during that shift to the nurse taking over.
Your family and friends are welcome to visit you. One caregiver can stay overnight with you. However, anyone who has symptoms of an illness (e.g., cough, rash, fever, diarrhea) or who feels they may be coming down with an illness should not come visit you. This is also true for people who could have recently been exposed to someone with an infection.
Even though you will feel tired after your chemotherapy and your transplant, you should still try to remain active and get out of bed every day. Its important to be safe, so ask for help when getting up.
We encourage you to walk around the unit. If your white blood cell (neutrophil) count is high enough, you can walk in the hallway before 7:30 am and after noon. You must wear a mask and gloves while you are walking around the unit. Your nurse will tell you if you also need to wear a gown when walking in the hallway. You should not leave the floor for walking or exercise. Your physical therapist will evaluate you early during your hospitalization and prescribe an exercise program thats right for you.
Each room has a call bell that is monitored 24 hours and a day, 7 days a week. If you need something, please say exactly what you need so we can send the right member of your healthcare team member to help you. Your unit assistant will be able to call the team member directly using a personal voice communicator. It looks like a phone that goes around the neck.
Your diet will be planned by your transplant team. You will be given a menu and instructions on how to order your meals. Room service will deliver your meals to you.
In general, everyone having a transplant is placed on a low-microbial diet. Your dietitian will discuss this with you. For more information, read the resourceLow-Microbial Diet, located at the back of this guide. If you keep kosher, have diabetes, or follow other specialty diets, tell your dietitian so that we can prepare your meals properly. Your dietitian is also available to help you plan your meals.
You will be expected to shower daily. Your patient care technician will be in your room when youre showering to help you and to make sure youre safe.
It is important that you take good care of your mouth. This will help to reduce infections and mouth sores. Your nurse will go over this with you.
During an outpatient transplant, you will receive all of your care, including chemotherapy, transplant, and post-transplant care, in the Outpatient BMT Clinic. The clinic is located on the 4th floor of the hospital. You should arrive at the clinic at your scheduled time. You will visit the clinic every day and will only be admitted to the hospital if you need more care than can be provided to you as an outpatient.
When you come to the clinic, you should wear comfortable clothing that allows for easy access to your CVC (e.g., shirts that open at the front, sweatshirts, or large t-shirts). Do not wear clothing that is difficult to take off or put back on.
Youll 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.
When you come to clinic every day, bring the following:
When youre not in the Outpatient BMT Clinic, your caregiver will have the responsibility of caring for you.
From the time you start receiving your chemotherapy, your caregiver must take your temperature every 4 hours while you are away from the Outpatient BMT Clinic. You will be given a thermometer. Your caregiver must also monitor all of the liquids you drink, write it in the Temperature and Oral Intake Log, and bring it to the clinic every day.
If your temperature is 100.4F (38C) or higher, your caregiver needs to take you to Urgent Care Center as instructed in your BMT Emergency Guide. While you are on your way there, call one of the numbers listed below:
If you have any bleeding, always tell someone from your transplant team. If you notice that youre bleeding and are youre not in the clinic, take the following steps right away:
Call your doctor right away if you have any of the following while youre not in clinic:
There are 5 phases of transplant: 1) Conditioning; 2) Transplant day to engraftment; 3) Engraftment to day of discharge; 4) Early convalescence; and 5) Late convalescence (see Table 1). It is important to realize, however, that these phases are not always exact, as everyones transplant timeline is unique. Also different, below is a table that describes what we consider the 5 phases of a stem cell transplant. We will go over each phase in more detail in the following pages. The time frames given are not exact, and there is some usually some overlap from 1 phase to the next.
Table 1: Phases of transplant
Phase
Description
Time Period
Phase 1:Conditioning
Day of hospital admission to Day 0 (transplant day)
*Start date varies depending on which conditioning regimen you will receive
Phase 2:Transplant Day to Engraftment
Day 0 to engraftment (blood count recovery)
*Usually betweenDay +10 and Day +30
Phase 3:Engraftment to Day of Discharge
Blood count recovery until discharge
Phase 4:Early Convalescence
Discharge to 1 year after transplant (or longer)
Phase 5:Late Convalescence
1 year after transplant and onward
Conditioning is another name for the treatment that you will receive to prepare your body for the transplant. During conditioning you will receive high doses of chemotherapy and sometimes, radiation therapy. The chemotherapy you receive depends on your cancer type, treatments youve had before, and your treatment plan. The purpose of conditioning is to kill any cancer cells that are still in your body.
The day of your stem cell transplant is called day zero. The days before transplant are negative numbers, and days after transplant are positive numbers. For example, conditioning starts before transplant, so the days of chemotherapy are assigned negative numbers (e.g., day -4, day -3, day -2, etc). Depending on your treatment plan, you may have 1 or multiple days of chemotherapy. Similarly, the days after transplant are assigned positive numbers day (e.g., Day +1, Day +2, etc.).
Your nurse coordinator will work with you to plan your schedule, provide you with a treatment calendar, and tell you the date of your treatment. Your transplant team will usually know an approximate time for the transplant 1 day before stem cell infusion on day 0.
Before you receive your chemotherapy, a number of safety checks will be done to make sure everything is correct. Once all the safety checks have been completed, your nurse will give you IV fluids (to keep you hydrated), medication(s) to keep you from getting nauseous, and chemotherapy through your catheter (see Figure 4).
Conditioning kills cancer cells, but it also kills normal dividing cells. This causes side effects, including fatigue (feeling tired), low blood cell counts, temporary loss of immune function, hair loss, mouth sores, nausea, vomiting, diarrhea, and infertility (not being able to have children naturally).
Your transplant team will help you and your caregiver understand and prepare for these side effects. Before you start treatment, make a list of questions that you would like to ask about these side effects. Talk through these questions with your caregiver and transplant team.
Fatigue is expected from conditioning. You should still try to remain as active as possible throughout your transplant. Limit the amount of time you spend in bed, and walk a little every day. Your physical therapist will recommend activities for you.
White blood cells make up your immune system. The purpose of your immune system is to protect your body against infections. There are many different types of white blood cells. One type of white blood cell, called a neutrophil, travels to the site of an infection and plays an important role in starting the immune response to fight germs. At some point after conditioning, the number of white blood cells and neutrophils in your blood will temporarily drop to zero. This will put you at risk for serious, life-threatening infections. When neutrophils are at very low levels, it is called neutropenia. Infections that occur in people with impaired immune systems are called opportunistic infections.
To prevent you from getting an infection, you will be started on prophylactic (pro-fe-lac-tic) medications. Prophylactic medications are given before there is an infection. You will get medication to try to prevent bacterial infections (antibacterial), fungal infections (antifungal), and viruses (antiviral) early in your transplant journey. Even with these medications you may still develop fevers in the first 2 weeks after transplant. Fever is an important sign of infection. If you develop a fever during transplant, your transplant team will perform tests, such as blood and urine tests, to look for infection. X-rays or other radiology tests may also be done. You will be given stronger antibiotics through your CVC to help fight the infection. Most infections are treated effectively with antibiotics.
During the transplant process, it is critical to avoid possible sources of infection. This is easier said than done. You and your caregiver will need to be careful about seeing visitors, what you touch, and where you go. While your white blood cell count is low, you should try to avoid:
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