Guide to Outpatient Autologous Stem Cell Transplant
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Outpatient Autologous Stem Cell Transplant: A Guide for Patients & Caregivers 1 Table of Contents Welcome & Overview About This Guide 4 Bone Marrow Basics 5 Autologous Stem Cell Transplant 6 The Five Phases of Transplant 7 Outpatient Autologous Stem Cell Transplant 8 Your Transplant Team 9 Before Your Transplant Summary and Checklist 11 Meeting Your Team 12 The Role of Your Caregiver 13 Financial Clearance 15 Pretransplant Medical Evaluation 15 Making Decisions About Your Fertility 16 Speaking to Your Children About Your Transplant 18 Making Arrangements for Childcare 19 Making Arrangements for Your Pets 19 Moving Into a Nearby Apartment or NY Presbyterian Guest Facility 20 Mobilization and Harvesting 21 Having Your Central Venous Catheter (CVC) Inserted 25 During Your Transplant Summary and Checklist 31 The Outpatient BMT Clinic 31 If You Are Admitted to the Hospital 33 The Conditioning Regimen: Receiving Your Chemotherapy 36 Monitoring Your Temperature and Liquid Intake 37 Rest Day 38 Transplant Day 38 After Your Transplant Summary and Checklist 40 Post-transplant Care at the Outpatient BMT Clinic 41 Side Effects From Chemotherapy 41 Living With a Low White Blood Cell Count (Neutropenia) 44 Living With a Low Platelet Count (Thrombocytopenia) 47 Living With a Low Red Blood Cell Count (Anemia) 49 Receiving a Transfusion 45 The Importance of Communication 52 Coping With Separation From Children 52 2 Exercise 53 Changes to Sexual Activity 54 Engraftment 55 Returning Home After Your Transplant Before Going Home 57 Going Home 57 Preventing Infection 58 Resuming Your Activities 65 Sexual Health 66 Drinking Alcohol and Using Tobacco 68 Follow-up Care 68 Common Medications to Avoid 70 Caregivers’ Guide for Bone Marrow/Stem Cell Transplant Glossary Additional Resources 3 Welcome & Overview Welcome to the Outpatient Autologous Stem Cell Transplant program at Memorial Sloan Kettering Cancer Center (MSK). About This Guide The information in this guide will complement the information your healthcare team will share with you. What’s in this guide This guide will help you learn about autologous stem cell transplantation: what it is, why it is being recommended for you, and what happens in each phase of the transplant. How to use this guide You should read this entire guide at least once, as well as the additional materials included at the back of the guide. Refer to this guide as your treatment progresses. As you read through this guide, make a note of any questions that come to mind. Your healthcare team can answer your questions the next time you see them. We value your feedback We are always trying to improve the information we give to our patients, their families, and their friends. After you've read this guide, you may think of ways it could be improved (maybe there’s something that was missing or wasn’t completely clear). Please e-mail your suggestions to us at [email protected]. We will incorporate your feedback into the next version of this guide. Glossary We’ve done our best to limit the number of medical terms in this guide. However, there are some words that we need you to understand. With this in mind, we’ve included a glossary of useful terms at the back of this guide. 4 Bone Marrow Basics What Is Bone Marrow? What Are Stem Cells? Your stem cells divide and change into the different types of blood cells in your body. Bone marrow is a substance found in the spaces in the center of the larger bones in your body—your hip, breastbone, and pelvis. Bone marrow contains a large number of stem cells. Stem cells are immature cells that produce all of the blood cells in your body—the white blood cells that fight infection, red blood cells that carry oxygen, and platelets that stop you from bleeding. Your stem cells are constantly dividing and changing into these different types of blood cells in your body, replacing older blood cells. Some stem cells also circulate in your bloodstream. You’ll hear your transplant referred to as a “bone marrow transplant” or a “stem cell transplant.” Technically, stem cell transplant is the more correct term, as you’ll be receiving an infusion of stem cells. 5 Autologous Stem Cell Transplant An autologous stem cell transplant is being recommended for you because your doctors feel that a transplant is the best treatment for your specific disease. Autologous means “from yourself.” When you have an autologous stem cell transplant, your stem cells are harvested (collected) from your body and then frozen before you receive chemotherapy. You will receive a very high dose of chemotherapy to kill any remaining cancer cells in your body. This chemotherapy will also destroy most of the blood cells in your bone marrow and bloodstream. Harvesting your stem cells beforehand allows us to give you this high dose of chemotherapy. Once we return your stem cells to you, they will slowly start to make new blood cells. You are literally receiving a stem cell transplant “from yourself.” This booklet is divided into 3 sections about the autologous stem cell transplant experience. Before You will prepare for your stem cell transplant. You will receive medications that stimulate your body to make more stem cells than normal and encourage those stem cells to circulate in your bloodstream. Your stem cells will then be harvested from your bloodstream and stored. You will have a central venous catheter (CVC) placed into your upper chest wall for your transplant. It may also be used to collect the stem cells. Your veins will be checked to determine the best time for the CVC to be inserted. During You will receive your chemotherapy (the “conditioning regimen”) to kill any cancer cells that remain in your body through your CVC. The stem cells remaining in your body and other blood cells will also be killed, and you will lose your ability to make new blood cells. Your immune system will be severely compromised. Your stem cells will be taken from storage, thawed, and infused into your body through your CVC. This is your stem cell transplant. After The infused stem cells will find their way through your bloodstream to your bone marrow. They will begin to divide and create healthy new blood cells. This process is called engraftment. Your immune and vital systems will begin to return to normal. This process takes time, and varies from patient to patient. 6 The Five Phases of Transplant Description Time Period Phase 1: Chemotherapy Chemotherapy will be given Day -10* to Day 0 to kill any cancer cells that You will receive high-dose are left, which will make *Start date varies chemotherapy with or room for new stem cells. depending on without radiation. Phase 1 will be finished when which conditioning you receive the infusion of regimen you will stem cells. receive. Phase 2: Neutropenia Your white blood cell, red Day 0 to blood cell, and platelet Engraftment You will feel the effects of counts will be low. the chemotherapy you You may have diarrhea, (usually between received. nausea, and/or mouth sores. Day +12 and Day Your risk of developing an +30) infection will be high. Phase 3: Early Recovery You may develop a fever, Day +5 to Day +7 rash, and pulmonary Your neutrophils will start infiltrates, known as to recover. “engraftment syndrome.” Phase 4: Early You will still be at risk of Day +30 to 6 to 12 Convalescence developing life-threatening months infections. Your immune system will You will remain on antiviral You will continue to still not be working medications to prevent be monitored properly, even though infections. closely by your your blood counts are transplant team. normal. Phase 5: Late Your immune system will be 12 months and Convalescence almost fully recovered. onward There will still be a chance You will return to your that you could develop late You will begin normal activities. complications, such as organ receiving dysfunction or recurrence of vaccinations you the original disease. may have had during childhood. 7 Outpatient Autologous Stem Cell Transplant Depending on your condition and treatment, you may receive part of your care as an inpatient in the hospital and part of it as an outpatient in the BMT clinic. While you’re being cared for in the outpatient clinic, you will stay locally at a NY Presbyterian Guest Facility furnished apartment or at an apartment previously approved by your primary doctor. You will be admitted to the hospital only if you develop complications. While each patient’s transplant is different, below is a typical timeline for someone having an outpatient transplant. You’ll see that the days leading up to the transplant are given minus numbers, such as Day −3, Day −2, etc. The day of the transplant is Day 0, and the days that follow are Day +1, Day +2, etc. Your healthcare team will use this format when they explain your transplant to you. Day −4: You and your caregiver will check into the NY Presbyterian Guest Facility or apartment close to MSK’s main hospital in Manhattan. Day −3: If a CVC hasn’t already been inserted, you and your caregiver will come to MSK’s Interventional Radiology department at the main hospital, where one will be inserted in your upper chest wall. You will return to your NY Presbyterian Guest Facility or apartment in the evening. Day −2: You will come to the Outpatient BMT Clinic to receive your chemotherapy. You will return to your NY Presbyterian Guest Facility or apartment in the evening. (In some cases, patients will need several days of chemotherapy. Your healthcare team will explain your specific treatment plan to you.) Day −1: This is a rest day.