Transplant Program Preparing for Transplant Table of Contents INTRODUCTION .....................................................................................................................4 PHONE NUMBERS AND OTHER IMPORTANT INFORMATION ..................................................7 THE BASICS OF TRANSPLANTATION ..................................................................................... 13 STEP 1: PLANNING AHEAD .................................................................................................. 16 FREQUENTLY ASKED QUESTIONS ........................................................................................................ 18 CAREGIVER REQUIREMENT ............................................................................................................... 20 DO PATIENTS AND CAREGIVERS NEED ANY FORMAL TRAINING? ................................................................. 22 CHILD-RELATED QUESTIONS .............................................................................................................. 23 FINANCIAL-RELATED QUESTIONS ........................................................................................................ 23 OTHER IMPORTANT QUESTIONS ........................................................................................................ 25 STEP 2: PREPARATION ........................................................................................................ 30 TRANSPLANT MANUAL .................................................................................................................... 31 CLASSES ....................................................................................................................................... 31 MEDICAL EVALUATION .................................................................................................................... 31 DATA REVIEW CONFERENCE AND YOUR CONSENT FOR TREATMENT ............................................................ 32 CENTRAL INTRAVENOUS LINE ............................................................................................................ 32 COMMUNICATING WITH YOUR FAMILY ................................................................................................ 32 STEP 3: CONDITIONING ....................................................................................................... 34 CONDITIONING CHEMOTHERAPY AND/OR TOTAL BODY IRRADIATION ......................................................... 35 HIGH DOSE CONDITIONING CHEMOTHERAPY AND/OR TOTAL BODY IRRADIATION .......................................... 35 SIDE EFFECTS OF HIGH DOSE CONDITIONING ......................................................................................... 35 MODERATE DOSE CONDITIONING CHEMOTHERAPY AND TOTAL BODY IRRADIATION ....................................... 36 SIDE EFFECTS OF MODERATE DOSE CONDITIONING ................................................................................. 36 STEP 4: TRANSPLANT .......................................................................................................... 38 TYPES OF INFUSIONS ....................................................................................................................... 39 ALLOGENEIC OR SYNGENEIC TRANSPLANTS ........................................................................................... 39 AUTOLOGOUS TRANSPLANT .............................................................................................................. 39 CELL INFUSION SIDE EFFECTS ............................................................................................................. 39 STEP 5: WAITING FOR ENGRAFTMENT ................................................................................. 40 WAITING AND WATCHING ................................................................................................................ 41 EMOTIONAL IMPACT ....................................................................................................................... 41 INFECTION RISK AND OTHER COMPLICATIONS ....................................................................................... 42 STEP 6: RECOVERY AFTER ENGRAFTMENT ........................................................................... 44 COPING WITH RECOVERY ................................................................................................................. 45 GRAFT-VERSUS-HOST DISEASE .......................................................................................................... 45 PREPARING TO LEAVE SCCA ............................................................................................................. 45 2 STEP 7: LONG-TERM RECOVERY .......................................................................................... 48 LONG-TERM RECOVERY ............................................................................................................... 49 RESOURCES .............................................................................................................................. 49 POTENTIAL CHRONIC PROBLEMS ................................................................................................... 49 QUALITY OF LIFE FOLLOWING TRANSPLANT ...................................................................................... 50 SUMMARY OF TRANSPLANT PROCESS ................................................................................. 51 TIMEFRAME FOR RECOVERY PROCESS: STEPS ALONG THE ROAD ........................................................... 54 DONOR INFORMATION ....................................................................................................... 55 STEM CELL INFORMATION ............................................................................................................ 56 PERIPHERAL BLOOD STEM CELL COLLECTION PROCESS ........................................................................ 57 BONE MARROW HARVEST PROCESS ............................................................................................... 61 NOTES/QUESTIONS TO ASK ......................................................................................................... 63 DEFINITION OF TERMS ........................................................................................................ 65 FUNDRAISING IDEAS ........................................................................................................... 71 MAPS, DIRECTIONS, AND PARKING ..................................................................................... 76 MAP OF SCCA, UWMC, AND SEATTLE CHILDREN’S ........................................................................ 77 SCCA MAP, DIRECTIONS, AND PARKING ........................................................................................ 78 UWMC MAP, DIRECTIONS, AND PARKING .................................................................................... 79 SEATTLE CHILDREN’S MAP, DIRECTIONS, AND PARKING .................................................................... 82 LIVE WITHIN A 30 MINUTE DRIVE FROM SCCA ................................................................................ 83 © 2012 Seattle Cancer Care Alliance Revised October 2020 Patient and Family Education 3 Introduction “Cancer is not fair or selective of its victims. What our family has learned through this journey is that we control our attitudes. No matter if our lives are long or cut shorter than normal, we can choose to be happy and thankful for each day.” Pediatric unrelated transplant recipient, 2000 Welcome Welcome to the Fred Hutch Bone Marrow Transplant Program at Seattle Cancer Care Alliance (SCCA) where over 400 transplants are performed annually. We are very pleased that you are considering treatment at our center in Seattle, Washington. SCCA brings together the best of three internationally-renowned comprehensive cancer-care programs in the Pacific Northwest: Fred Hutch, UW Medicine, and Seattle Children’s. Most people have many questions and practical concerns about transplants and treatments. We hope this information answers most of your immediate questions and helps you prepare for consultation or treatment. We suggest that you write down any additional questions you may have. We will be contacting you by telephone to discuss your questions and to make arrangements for your stay in Seattle. You may also use the Important Phone Numbers at the front of this guide to contact us. About us Fred Hutch Fred Hutch is one of 49 comprehensive cancer centers in the United States, as designated by the National Cancer Institute. It is also one of the largest bone marrow transplant centers in the world. It was here that Dr. E. Donnall Thomas pioneered bone marrow transplantation and received a Nobel Prize for his work. The significance of his efforts along with the work of many of the faculty at this center continues to be internationally recognized. Constant research and scientific advances since the 1960s have significantly increased the success of marrow transplantation. In addition to our contribution to science, we are recognized for the highest quality in clinical services. Mission statement The mission of Fred Hutch is the elimination of cancer and related diseases as a cause of human suffering and death. Fred Hutch conducts research of the highest standards to improve prevention and treatment of cancer and related diseases. In fulfilling the mission of Fred Hutch: • Biological scientists conduct fundamental research to discover