ROSWELL PARK CANCER INSTITUTE. Blood & Marrow. Transplantation. Autologous Blood & Marrow Transplant Manual. Phases of the BMT Process

Transcription

1 ROSWELL PARK CANCER INSTITUTE Blood & Marrow Transplantation Autologous Blood & Marrow Transplant Manual Phases of the BMT Process

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3 Dear Patients, Families and Friends: Welcome to Roswell Park Cancer Institute (RPCI). You or someone you love may be considering an Autologous Blood or Marrow Transplant (BMT) at RPCI. Our Blood and Marrow Transplantation Center team has developed this manual to answer your questions and to serve as a source of important information during the various phases of the BMT process. Please read this manual carefully and, for easy reference, bring it with you when you come to the hospital. Introduction Here at the nation s first cancer research, treatment and education center, we perform blood and marrow transplants for pediatric and adult patients. Undergoing a blood or marrow transplant is a courageous endeavor requiring a major commitment from patients and families. We will support you every step of the way. The patient and his/her family are our primary focus. If, at any time, you want more information or have specific questions, please do not hesitate to ask. We welcome your questions and want you to always feel free to talk with us. RPCI s multidisciplinary team of cancer experts and its cutting-edge treatments mean that patients receive the best possible care available today. BMT research is pioneered here, and our facility is accredited by the National Marrow Donor Program as a Transplant, Collection and Apheresis Center as well as the Foundation for the Accreditation of Cell Therapy (FACT). The members of RPCI s BMT team know this is a difficult time. We will do everything we can to soften the stressors of treatment and recovery. We strive each day to treat our BMT patients with dignity and compassion. Each patient becomes the most important member of the BMT team, and each patient s family becomes part of the RPCI family. We will work together to fight this battle. Sincerely, Your BMT Team

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5 About Roswell Park Cancer Institute... Our Mission...1 Putting Patients First...1 National Recognition...1 Location, Maps & Directions...1 Parking & Lodging...2 Support Services...4 Clinical Trials...5 Understanding Transplantation... Why a Transplant?...7 What is Bone Marrow?...7 What is a Transplant?...8 National Marrow Donor Program...10 CONTENTS Information for Patients... We re in This Together...11 Your Health Care Team...11 Preparing for Your Transplant...14 Your BPC Collection or Bone Marrow Harvest...19 RPCI s Transplant Unit...23 Your Transplant & Recovery...25 Blood Cell Levels & Transfusions...28 When Your Blood Counts are Low...30 Side Effects...33 Complications...34 Challenges & Responsibilities...39 Your Discharge...40 Resuming Daily Activities...42 When to Notify Your Doctor...48 Information for Platelet Donors...49 BMT Resources and Financial Assistance...53 Laboratory Tests and Procedures...57 Medications...60 Glossary of Terms and Abbreviations...65

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7 Our Mission Since 1898, the physicians and scientists at Roswell Park Cancer Institute in Buffalo, New York, have focused their clinical and intellectual expertise on one goal: to conquer the complex group of diseases called cancer. We are dedicated to: providing total care to the cancer patient. conducting research into the causes, treatment and prevention of cancer. educating the public and the next generation of researchers and medical practitioners. Putting Patients First RPCI brings together, on one campus, a staff of physicians, scientists, oncology nurses, allied health professionals and technicians, all devoted to cancer care and research. Scientific education occurs at every level, providing an environment that nurtures state-of-the-art basic and applied clinical research. Our patients are the first to benefit from progress made by our scientists. Beyond research, outstanding patient care is a hallmark of our work at RPCI. Recent surveys indicate that 98 percent of our patients felt their experiences here met or exceeded their expectations. The same number of patients said they would be willing to return to RPCI should their medical condition warrant it, and would be extremely or very likely to recommend RPCI to others. About Roswell Park National Recognition RPCI is one of just 39 comprehensive cancer centers in the United States and the only one in Upstate and Western New York designated as a center of excellence by the National Cancer Institute (NCI). RPCI served as a model for the NCI s cancer centers program, developed throughout the country following the adoption of the National Cancer Act in At these highly specialized centers, the collaboration of basic research and clinical medicine yields the greatest progress in the war against cancer. Comprehensive cancer centers conduct programs in all three areas of research basic science, clinical, and cancer prevention/control as well as programs in community outreach and education. RPCI is also a member of the National Comprehensive Cancer Network (NCCN), an alliance of leading cancer centers working to improve the quality of patient care and provide best practice guidelines and measurements. Location, Maps & Directions Roswell Park Cancer Institute is located in Western New York in the heart of the city of Buffalo. RPCI is easily accessed from the Buffalo Niagara International Airport, major highways, including the New York State Thruway (Interstate 90), and Canada via the Peace Bridge. 1

8 Buffalo, the City of Good Neighbors, is known for its sense of community and hospitality, an atmosphere clearly reflected at RPCI. To reach Roswell Park Cancer Institute: From Points East of Buffalo. Take the New York State Thruway (I-90) to Exit 51W (33W). Exit 33W at Locust Street. Turn right at the first traffic light (Michigan Avenue). Continue two blocks to Carlton Street; turn left. Follow signs to RPCI s Main Entrance. From Points West of Buffalo. Take the New York State Thruway (I-90) to the Downtown Section (I-190). Exit at Elm Street and continue on Elm until it ends at Goodell Street. Turn left onto Goodell and continue to Ellicott Street; turn right. Take Ellicott to Carlton Street; turn right. Follow signs to RPCI s Main Entrance. Bus and rail lines are convenient to RPCI. The bus station is located at 181 Ellicott Street. Visitors may take the No. 8 Main Street bus line to RPCI. For Metro Rail, use the Allen/Hospital Station at Main and Allen Streets near RPCI. For schedules, fares and routes, call the Niagara Frontier Transportation Authority at or visit on the Internet. If you have transportation problems or any questions about travel to and from RPCI, contact our Department of Social Work and Case Management or your local unit of the American Cancer Society at Parking and Lodging The parking ramp at RPCI is located at the corner of Michigan Avenue and Carlton Street. The patient/visitor entrance is on Carlton Street. The parking ramp is open 24 hours a day, seven days a week. An hourly rate is charged, with a daily maximum. You must pay each time you exit. Discount information for outpatients and also for inpatients on the day of admission and discharge is available at the information desk, located in the hospital lobby. 2

9 Monthly key cards are available. For a set fee, the key card enables you to enter and exit the ramp as often as you like. Family members of BMT patients might be eligible for fee reimbursement through the American Cancer Society or The Leukemia & Lymphoma Society. Parking ramp office hours are from 7 am to 4:30 pm, Monday through Friday. Monthly parking permits may be purchased between the first and 10th of each month at the ramp office. On-street parking is strongly discouraged. RPCI cannot assume responsibility for parking tickets or damage to vehicles parked on the streets. Escort service is available 24 hours a day through the Safety & Security Department, located just inside the hospital entrance on the left. This service is recommended after dark. Comfortable, affordable housing for cancer patients and their families is available nearby. Convenient hotels and motels, including the adjacent Hilton DoubleTree Club Hotel Downtown Buffalo, offer special rates to RPCI patients and their families. For further information, call the Department of Social Work. Hilton DoubleTree Club Hotel Downtown Buffalo, 125 High Street, is a 100-room, 12- suite, full-service facility connected to RPCI. Features include in-room kitchenettes, a laundry, fitness and business centers, complimentary parking, escort service, restaurant, and medical rates based on length of stay. For reservations, call or toll-free, TREE (8733). Three hospitality houses also are convenient to RPCI: Kevin Guest House, within walking distance of RPCI at 782 Ellicott Street, offers low-cost lodging to cancer patients and their families. Established in 1972, this is the oldest hospitality house in the United States and was the prototype for 60 Ronald McDonald Houses around the world. Kevin Guest House also has some apartments for rent to BMT patients and their caregivers. Contact your social worker for information on financial assistance and possible Medicaid or insurance coverage. The guest house phone is Hope Lodge, located at 197 Summer Street in Buffalo, provides free overnight accommodations to cancer patients and their families. The Hope Lodge is owned and operated by the American Cancer Society, New York State Division. Phone Ronald McDonald House, also in Buffalo at 780 West Ferry Street, provides low-cost lodging and emotional support to the parents of pediatric and adolescent patients. This house is owned by the Western New York Children s Health Services. Medicaid sometimes covers the cost. Phone

10 Support Services Ask-RPCI Trained information specialists will answer any questions on cancer and the services available at RPCI, and provide literature, resources and referrals to callers. The toll-free number is ASK-RPCI ( ). Phone lines are staffed Monday - Thursday, 9 am - 8 pm, Friday, 9 am - 5:30 pm, and Saturday 10 am - 2 pm. The address is askrpci@roswellpark.org. Community Cancer Resource Center RPCI s Community Cancer Resource Center (CCRC) is temporarily located within the Sunflower Café, in conference room A, on the first floor. It is staffed by trained information specialists, stocked with cancer resources, and provides access to computers. Information on cancer how to find, interpret and personalize it is the CCRC s mainstay. But the homey room with its soft music, sofas and quilts is also a place to relax. Yoga and meditation classes and hand massage are popular diversions. An in-house boutique provides patients with free wigs, scarves and hats. Insurance RPCI financial counselors manage the insurance verification process for potential BMT candidates. Your insurance company will be contacted to verify that BMT is a covered benefit and what level of benefits is available. Patients who have inadequate or no insurance coverage may be advised of other options. You will be notified of your transplant authorization through a letter from your insurance company or during a financial interview. Written authorization is required before you are admitted for a BMT. RPCI bills your insurance company directly. You will be billed for any balance. So that billing is accurate and payments are issued directly to RPCI (when applicable), it is important that you bring your insurance identification card(s) with you and complete the Assignment of Benefit form during registration in the Admissions Department. Most insurance companies have precertification and utilization review requirements. A member of RPCI s Precertification Department will precertify your admission with your insurance company. A member of RPCI s Department of Social Work and Case Management will conduct a concurrent review, if required, by contacting your insurance company regularly while you are an inpatient to verify medical necessity and provide any information required. Patients from outside the United States must speak to a financial counselor to pre-arrange payment before any services or treatment. Questions regarding the insurance verification process, billing, financial arrangements or other concerns can be directed to your financial counselor. 4

11 Pastoral Care Pastoral care staff at RPCI work with physicians, nurses and other members of the psychosocial oncology team to ensure the total care of patients and their families. They provide pastoral counseling and minister to the spiritual, emotional and psychosocial needs of patients, family members and friends at all stages of the treatment process. Episcopal, Protestant and Roman Catholic chaplains provide sacraments and religious literature upon request. A rabbi is available to assist with rituals and traditions of the Jewish faith. Area clergy of most faith denominations are available to support patient and family needs at RPCI. Pastoral care staff members visit inpatients and outpatients daily. Chaplains also are available around the clock to respond to the urgent spiritual and emotional needs of patients. Clinical Trials Because cancer research is critical to RPCI s mission, you may be asked to participate in a clinical trial, which is a study to evaluate a new treatment. The participation of patients in clinical trials is important to advancing knowledge of the best ways to treat diseases such as cancer. The search for effective cancer treatments begins in the laboratory. No matter how promising a treatment appears there, however, scientists are unable to predict exactly how effective and how safe a treatment will be for patients unless it is evaluated in patients. Physicians have two major concerns when they design clinical trials: that patients who participate receive the highest quality medical care. that rigorous scientific principles are followed so that meaningful conclusions can be drawn. Clinical trials must follow a protocol, a carefully designed plan that details what will be done, how and why. There is a chance that a new treatment will be disappointing. However, researchers have very good reason to believe that the new therapy will be as good as, or better than, current treatments. New treatments almost always build on what has worked in the past. By the time a new therapy is ready for clinical trial, it has undergone a thorough research and ethical review. Patients who participate in clinical trials have the best opportunity to receive front-line, leading-edge treatment. If a new treatment is successful, they are the first to benefit. These patients also are helping future cancer patients. If you are eligible and decide to participate in a clinical trial, you will be asked to sign an informed consent form that explains the study, its risks and potential benefits. However, giving your informed consent does not force you to stay in the study. Your participation is 5

12 always voluntary. You may withdraw from a study at any time without concern that your choice will affect your future care. You will continue to receive the best treatment we have to offer. Research conducted at RPCI is carefully reviewed and approved by a clinical investigation committee of physicians, scientists, nurses, psychologists, clergy and lay people. Your safety and welfare are the committee s primary concerns. 6

13 Why a Transplant? A blood or marrow transplant (BMT) allows doctors to aggressively treat a growing range of diseases. The transplanted blood or marrow stem cells replace diseased or damaged bone marrow. BMTs have been used to treat patients who have congenital (present at birth) and acquired disorders, as well as those who have blood-related (hematologic) and solid tumor cancers. In patients with leukemia and aplastic anemia, the stem cells in the bone marrow do not work as they should. In leukemia, too many immature or defective blood cells are produced. They interfere with the production of normal blood cells, spill over into the bloodstream and may invade other tissues. In aplastic anemia, the bone marrow stops producing blood cells. Strong doses of chemotherapy and/or radiation are needed to destroy these defective stem cells and the abnormal blood cells they produce. However, these therapies can also destroy normal bone marrow. Likewise, very powerful treatments, which are needed to effectively treat some soft tissue cancers (called lymphomas) and other types of solid tumor cancers, can destroy healthy bone marrow. A BMT enables doctors to treat these diseases aggressively with chemotherapy and/or radiation, and then replace the diseased or damaged bone marrow after treatment. Although a BMT does not guarantee that the disease won t recur, a BMT can increase the likelihood of a cure or at least prolong the period of remission in many patients. A BMT never is taken lightly. The transplant is an attempt to cure a potentially fatal disorder. A BMT is a very difficult process and requires a great deal of commitment from both patient and family. Understanding Transplantation What is Bone Marrow? Bone marrow is a spongy meshwork material; it is found in the top section of your long bones, pelvic and shoulder girdles, breastbone, the ends of your ribs and the flat bones of your skull. Blood cells are made in the bone marrow. You have several types of blood cells, each with its own special job to do. Blood cells are produced and grow in the same general way as other cells. Most tissues and organs in your body contain a supply of immature cells called stem cells. When your body needs new cells to replace worn out or damaged cells, the stem cells divide, mature and become fully developed and functional. When you no longer need them, the production of new cells slows or stops. This process of blood cell growth and development is called hematopoiesis. Stem cells in your bone marrow contain the genetic information that controls 7

14 how and which types of blood cells your body produces. Blood cells are not released from your bone marrow into your bloodstream until they are developed and ready to do the job they are supposed to do. One special type of blood cell (called blood progenitor cells or BPCs) that circulates in your bloodstream appears to be similar to the stem cells found in your bone marrow. BPCs can repopulate damaged bone marrow and restore hematopoiesis; they can be collected from your bloodstream using a leukopheresis machine. When you read the term blood and/or marrow transplant in this guide, the word blood usually refers to BPCs, which are also sometimes called peripheral blood stem cells. What is a Transplant? Transplantation is the transfer of living tissues or organs from one part of the body to another or from one individual to another. A BMT should be thought of in terms of a transfusion rather than a surgical procedure or operation. The replacement marrow (or BPCs) is called a graft; you (the one who receives the graft) are the host. A blood or marrow transplant can be one of two types. The type of transplant your doctor recommends depends on your age, the type of cancer or disease you have, other disease characteristics and whether a suitable related donor is available. In an allogeneic transplant, the patient receives a replacement marrow or stem cells from another person. Sometimes, the graft launches an attack on the recipient. This is called graft versus host disease (GVHD). In an autologous BMT, the type needed for your disease, you are your own donor. The advantages of autologous BMT are elimination of the danger of GVHD and the possibility of an easier recovery period. Autologous BMT In an autologous BMT, your own bone marrow and/or stem cells will be removed before you receive chemotherapy and/or radiation. After it has been removed, your bone marrow may need to be processed to remove lingering cancer cells or isolate stem cells. It will be frozen and stored until your treatment is finished, then thawed and given back to you to replace the marrow that was destroyed by your treatment. Autologous BMT is possible for you because the disease affecting your bone marrow is in remission or the condition you are being treated for does not involve your bone marrow. Allogeneic BMT In an allogeneic BMT, the patient receives BPCs, bone marrow or, at times, umbilical cord blood from a related or unrelated donor. The commitment required from patient and family is quite heavy. Patients should expect a minimum of a year s commitment to the process. Even after leaving the hospital, allogeneic 8

15 BMT patients still have a long way to go to recover in some cases, it can take years, especially if they develop the complications of chronic GVHD. Donor Compatibility Issues If an allogeneic transplant is to succeed, the donor and recipient must be similar in their genetic make-up. We all have special proteins (antigens) on the surface of our WBCs and other cells, called human leukocyte antigens (HLA); the combination of antigens we have gives us our tissue type. Testing for HLA antigens, also called tissue typing, is a blood test used to find out which antigens we have (usually six are checked). Other than a twin (which is a perfect match), the best match is a person who has all six matching antigens. Even so, because the transplant comes from another person, there is a possibility of immunologic complications. If a donor cannot be found who matches all six antigens, doctors may use a donor with five, or possibly even four matching antigens, but because there is greater incompatibility, there is a greater risk of more severe GVHD. There are several types of allogeneic transplants: Syngeneic transplant. Donor and patient are identical twins. They are considered to be perfect matches because they have identical genetic types. Matched Related Transplant. Donor and patient share the same or similar genetic types usually a brother or sister (rarely a parent or cousin). The chance of matching a brother or sister is 25% for each sibling. Typing of the siblings is performed if they are healthy and according to a priority based on the sex of the patient and potential donors, as well as age. If there is not a complete match, the term mismatched is used. A complete match is preferred, but in certain situations, a related donor and patient can be mismatched to some degree. If there is too much mismatching, severe, usually fatal, GVHD will occur. Matched or Partially Matched Unrelated Transplant. Donor and patient are not related. Some of us share similar genetic backgrounds, so it is possible that someone unrelated may have a similar genetic type. Cord Blood Transplant (CBT). Stem cells are obtained from the umbilical cord of a donor to a patient. Umbilical cord blood, like bone marrow, is rich in stem cells. These stem cells can be collected from related or unrelated donors, frozen and infused into a patient. CBT has been performed mainly on children and young adults weighing less than 90 pounds. However, larger adults have been transplanted successfully. CBT may have potential advantages over a BMT: There is no risk or discomfort for the donor. Cord blood is rarely contaminated with viruses that can cause serious problems for the transplant patient. The risk of severe graft versus host disease (GVHD) may be lower. Engraftment occurs more slowly with cord blood than with stem cells derived from blood or 9

16 bone marrow. In addition, there may be a higher risk of infection in adults receiving cord blood transplants. National Marrow Donor Program The advent of the National Marrow Donor Program (NMDP) and other international registries has made finding similar matches more likely for those people who do not have a related donor, but require an allogeneic BMT. Roswell Park Cancer Institute is an accredited Transplant, Collection and Apheresis Center for the NMDP. To learn more about the National Marrow Donor Program, call MARROW-2 or access them on the Internet at 10

17 We re in This Together! You and your family may have many questions about what to expect during the actual BMT process. You will find answers to many of your questions here. We also urge you to share your concerns and questions with members of your BMT team. The process of a blood or marrow transplant is very complex. All of the responsibilities and possibilities, coupled with the prolonged aspects of recovery, may feel overwhelming to patients and their families. Here at Roswell Park Cancer Institute, we are committed to helping you each step of the way by staying attuned to your medical, emotional and physical needs. Your Health Care Team Many people will be helping you through your BMT procedure. Together, they make up your multidisciplinary BMT health care team. Your team members are constantly communicating to ensure that you receive the best possible care. We consider you and your family to be important parts of this team, and so we encourage you to ask questions and share information with us. Communication is not only welcome, but is a key part of your treatment and recovery. A successful BMT requires a medical team of BMT experts doctors, nurses, your BMT coordinator and other support staff who can recognize problems and emerging side effects promptly and know how to react swiftly and properly. Psychological support throughout the BMT process also is important and will be available to you and your family. Information for Patients Physicians BMT physicians are experts and have ultimate responsibility for patient care. Your clinic physician will meet with you to develop your specific treatment plan and will serve as your attending physician during both inpatient and outpatient care. Nurse Practitioners (NP) Registered NPs are licensed to obtain patient histories, perform physical examinations and certain diagnostic procedures, and prescribe medications. Your NPs have specialty training in BMT and work closely with your attending physician. Physician Assistants (PA) PAs are also licensed to obtain patient histories, perform physical examinations and certain diagnostic procedures, and prescribe medications. They have specialty training in BMT and work under the supervision of your attending physician. 11

18 Transplant Unit Staff Nurses BMT staff nurses are registered nurses with specialty training in caring for BMT patients. Most nurses assigned to your primary care work eight-hour shifts. They will encourage you and your family to be actively involved in your care, answer questions and provide support, as needed. Blood and Marrow Transplant Coordinators Your BMT coordinator, a key contact and resource person, will shepherd you through your pre-transplant evaluation, admission and stem cell collection, and will help smooth the transplant process prior to admission. Financial Counselors Your financial counselor is an account representative available for any insurance or financial questions or problems. You should contact your financial counselor if you change insurance coverage or receive any bill from RPCI or the Clinical Practice Plan that you do not understand. Registered Dietitians Registered dietitians will monitor your nutritional status, and offer options to help you increase your dietary intake as appropriate. Besides oral foods, intravenous nutrition or possibly nutrition through a feeding tube may be necessary. Pharmacists Your pharmacist is a clinical specialist on medications who will provide drug information to you, your team members and your family. He or she will verify your medications and dosages to prevent drug interactions and reduce side effects when possible. Your pharmacist will carefully monitor your drug intake so that adjustments in your medications may be ordered if needed. You will be counseled about your medications before discharge, and will receive a medication organizer and timetables to assist you with taking your medications correctly at home. Psychologists Your psychologist is involved with many aspects of your care, including individual or family therapy tailored to your specific needs. They will help you develop strategies for mood changes, cognitive changes, stress reduction, sleep difficulties and coping with lengthy hospital stays. Your psychologist will work closely with your consulting psychiatrist and other team members and most likely follow your care through outpatient treatment after you are discharged. Medical Social Workers Your medical social worker will handle many facets of caring for you and your family, including counseling, crisis intervention, and support as you learn to deal with your diagnosis and need for an altered lifestyle. If you need help to follow your doctor s medical 12

19 orders or to identify social, emotional and economic factors affecting your medical status, your medical social worker can assist you. He or she can help you locate community resources and can provide referrals in such areas as entitlements, legal assistance, counseling and health care proxies. Nurse Case Managers Your nurse case manager will coordinate every aspect of your BMT and help you, your family and team members develop a comprehensive plan of care. When you are ready to go home, she or he will help you obtain services, including home care services ordered by your physician, subject to insurance coverage, availability and appropriateness. Child Life Specialists If your son or daughter is having a BMT, a child life specialist will offer activities and services to meet your child and family s psychosocial, emotional and developmental needs. Upon referral, consultation and services are provided for children of adult patients. Physical Therapists Your physical therapist will help you develop and maintain strength and endurance through a specially designed daily exercise program. Occupational Therapists Your occupational therapist will provide leisure activities and supportive visits to help you and your family deal with long periods of hospitalization. Splints, slings or braces can be fitted as needed to prevent contractures (permanent shortening of muscles, tendons, etc.), alleviate pain or provide support. If you have any problems such as reduced strength or endurance, she or he will teach you, before you are discharged, how to simplify work and conserve energy during daily activities. Dentists Your dentist will conduct a comprehensive oral exam before your BMT to look for any conditions that could compromise your transplant and eliminate problems before they arise. Good oral hygiene plays a key role in your successful transplant. The dental team will explain changes that could occur in your mouth and how to prevent potential problems. You will be advised if a thorough cleaning is needed before your transplant, and the dentist will fill any cavities or extract teeth as needed. Respiratory Therapists Your respiratory therapist will perform pulmonary (lung) function tests and cardiac (heart) and/or pulmonary stress tests to find out how well your heart and lungs are working. If you are found to have a breathing disorder, your situation will be evaluated so that you may receive the care and treatment you need. Treatments range from assisted ventilation, to oxygen, oxygen mixtures, chest physiotherapy and aerosol medication. If your discharge plan includes oxygen or respiratory therapy, your therapist will work closely with the rest of the transplant team to teach you what to do to take care of your specific needs. 13

20 Clergy and Pastoral Caregivers Pastoral care is available to you and your family around the clock. Any member of the RPCI staff can call a chaplain for you, or you may call the RPCI operator to page the oncall chaplain. The pastoral care staff can arrange specific referrals to a church, synagogue, mosque or minister of your faith. Preparing for Your Transplant Successful blood and marrow transplantation requires healthy blood and/or bone marrow for infusion. In addition, you must be healthy enough to endure the rigors of the BMT process. To determine whether you are a good candidate, your doctor will consider your age, general physical condition, diagnosis and stage of disease. One very common and realistic concern is how to deal with the extended period of hospitalization. The average period of hospitalization for autologous BMT patients is from two to four weeks. Your stay at RPCI will depend upon your specific needs. Preparing for such a lengthy hospital stay can be extremely difficult. You will have to decide which priorities you should address. Remember, the minimum hospital stay could change because timing depends on recovery of the blood or bone marrow, complications that may arise and many other factors. Make preparations for a longer stay than anticipated. That way, you won t be discouraged by an extended stay, but could find yourself uplifted by the pleasant surprise of an earlier than expected discharge. It may be possible for you to receive all or some of your autologous BMT treatment as an outpatient. This decision depends on many issues, including the status of your disease and whether you live nearby. If you want to consider this option, ask your doctor. Although still extremely challenging, undergoing a BMT today is not quite as difficult as in the past. This is due to advances in medical technology, better supportive care, new medications, less intense regimens, shortened hospital stays and the ability to give medications in the outpatient setting. Our chemotherapy and radiation regimens have been refined to be as beneficial as possible for our patients, with the least possible toxicity (side effects). Pretreatment Evaluation During your first visit to RPCI, a complete medical history will be taken. This will include confirmation of your diagnosis, a detailed description of your previous treatments, the results of those treatments and your reactions to them. Any other existing medical problems will be evaluated, including any history of allergies and infectious diseases. You will be required to provide your initial slides to confirm your diagnosis, and any test results (such as x-ray films or CAT scan results) that will help determine the status of your disease. You may require additional courses of chemotherapy and/or radiation before being considered for a BMT. 14

21 Before the transplant process begins, we must ensure that your heart, lungs, kidneys and liver are strong enough to tolerate the side effects of chemotherapy and other medications that may be used during the procedure. Before the transplant, you will have a series of outpatient tests to determine your current state of health. These tests must be completed within 30 days prior to your admission for transplant. Listed below are the possible tests you may undergo, depending on your disease, your transplant protocol, and whether you have had these tests previously. Chest x-ray Bone marrow aspiration and biopsy Lumbar puncture Blood tests CAT scan/skeletal survey Pulmonary function test ECHO/EKG/MUGA Checks your lungs for disease. Checks your bone marrow for disease and genetic information. Checks the fluid surrounding your brain and spinal cord for disease or infection. Checks your blood counts, as well as liver, kidney, and immune system function; also checks for infectious diseases. Special x-rays look at your neck, chest, abdomen, head or bones to monitor for disease. Determines how well your lungs are working. These three tests determine how well your your heart is working. Long-term Intravenous Catheter Placement Before your transplant, you will be given a long-term intravenous (IV) catheter, if you do not already have one. This IV is a special catheter inserted by a doctor into a large vein in your chest so that you do not have to endure repeated needle sticks. You will be given a sedative and local anesthesia to numb the area. The catheter is made of plastic and is similar to regular IV tubing. It has several ports, allowing it to be used for taking blood samples and giving chemotherapy, antibiotics, blood products and other medications. The catheter will remain in place for the duration of your transplant and for as long as needed after discharge. You and/or a family member will receive instructions on how to care for and clean the catheter. Patient Education Meetings The BMT process will be reviewed with you and your loved ones at special informational meetings. We will go over the informed consent form that you must sign before admission. This process assures that you have been given important information about why a BMT is recommended, and its possible risks, benefits and expected side effects. We will answer 15

22 any questions that you, your family and/or friends may have, help you to understand the informed consent form, and discuss the risks and benefits of alternative treatments. These discussions may occur over several meetings before you are admitted for BMT. It is important that you know what to expect from the BMT process and that you are actively involved in all decisions involving your care. Psychosocial Evaluation You will be evaluated by a medical social worker to determine whether there are any psychological factors that would prevent you from having a BMT. The stability of your support network will also be evaluated to determine the extent to which your spouse, parents, siblings or others are able to provide necessary emotional and psychological support. If needed, the medical social worker may involve medical psychologists in evaluating your psychosocial needs and may collaborate with them to develop an effective plan of care. Prior to work-up/evaluation for transplant you will be expected to have/secure a primary caregiver for your post discharge period. Your caregiver will be expected to assist you with your daily needs including ensuring medication compliance, transportation to and from clinic visits, meal preparation, assistance with activities of daily living and daily household chores. Your designated caregiver should be with you at all times after you are discharged from the hospital until your Transplant physician feels you are ready to be on your own. You will designate a primary caregiver and have secondary caregivers who will fill in and rotate within a schedule to assist you. Transplant Orientation Program You and your caregivers will be expected to attend the Caregiver Orientation meeting developed and held by the Department of Psychosocial Oncology. The program provides information that you and your caregivers will need to successfully cope with the demands of the transplant and the post-transplant phase of recovery. You will have the opportunity to meet many team members and a post-transplant patient and caregiver, and to ask any questions. These meetings are held twice a month, on the 1 st Tuesday and the 3 rd Thursday for your convenience. This required meeting will be in addition to your family meeting held before your admission for transplant. These meetings will be scheduled through your transplant coordinator. Social Work Consultation/Advanced Directive and Health Care Proxy You will meet your BMT social worker before you are admitted. This experienced health care professional can direct you and your family to local resources, acquaint you with the BMT unit and provide emotional support. The social worker can answer your questions about RPCI, the BMT unit, insurance, and any other questions you may have. She or he can also help you complete your Health Care Proxy and Advanced Directive forms. The Health Care Proxy identifies one or two individuals who understand your treatment goals and can represent your wishes should you be unable to do so. 16

23 The Advanced Directive instructs your representatives as to your wishes should you be unable to express yourself. These forms are available at the BMT unit and from the Admissions Department. Dental Exam Your mouth is a possible source of infection that may complicate your upcoming transplant. Your mouth and teeth will be carefully examined for any infections, sores or cavities that require treatment prior to your BMT. The dentist will make suggestions for your care and advise you on changes that may occur in your mouth during and after your transplant. Nutrition and Exercise Before your transplant, it is important to maintain your nutritional intake by eating a wellbalanced diet, adequate in protein and calories. No food restrictions are needed unless you are on a special diet. If you are experiencing an eating problem, please notify your doctor. You should remain active. Walking is a good way to build strength and increase your circulation. Do not overdo this can be more harmful than no activity at all. You should not be in pain during or after your exercise. If you have any questions regarding nutrition or exercise, please speak with your doctor or transplant coordinator. Smoking and Alcohol If you smoke, it is important that you quit to minimize risks to your health. We ask that you stop smoking 30 days before you enter the hospital for your transplant; otherwise you will increase your chance of dying from complications. Likewise, smoking after your transplant aggravates your risk of developing and dying from pneumonia. The existence of liver disorders before your BMT can increase your risk of developing severe liver complications during or after BMT. Various tests are done before, during and after your BMT to evaluate and monitor your liver function. Alcohol can damage your liver. You should avoid all alcohol before and after your BMT. Alcohol also can damage your transplanted cells or decrease their ability to function. Fertility Considerations Male patients may want to consider the option of sperm banking before their BMT. If so, you should ask your doctor for information. You also can call the Rochester Regional Cryobank and Andrology Laboratory at or the Infertility and Invitro Fertilization Medical Associates of Western New York at If you are a female patient concerned about fertility issues, please talk with your doctor or another member of your BMT team. Family and Personal Concerns We understand that you may miss physical contact with your family. We encourage family members to stay with you, or nearby, during your hospitalization, and to visit as long as they are healthy. 17

24 Members of your family will often have added responsibilities during your BMT process. Their experience can be draining, too both physically and emotionally. We are available to provide support to them during this time. We also encourage them to be attentive to their own needs. Special precautions will be taken before and after the BMT to protect you from infection while your immune system is suppressed. You may feel lonely and isolated. Adding personal touches to convert your hospital room into your own special area may help; many patients find that encouraging visitors to talk about what is going on in the outside world helps as well. Positive, upbeat anecdotes about family and friends, descriptions of stores or museums visited, plays or movies that they have seen, the latest gossip from work or school anything that brings the world to you will make you feel less isolated and cut off from normal life. Emotional Concerns Having a BMT can be very stressful, and you may experience feelings of anger, depression, frustration, fear, helplessness, loss of control, boredom, fatigue and loneliness. You may also experience positive feelings of hope, love, joy and encouragement. The range of emotions and mood swings, the limited activity and the loss of privacy can be overwhelming for some patients. Most patients have difficulty with concentration and memory at some point during the transplant process. These feelings are completely normal. Expressing your feelings, even unpleasant ones, helps with healing. Stress. Having information and knowing what to expect will enable you to cope better with stressful situations. We want you to ask questions and seek help if you need it. Because subtle day-to-day developments in your coping, mood and general adjustment may not be immediately apparent to your medical and support staff, we rely to a great extent on you and your family to let us know how you re doing. Take advantage of the experiences, understanding and support of your BMT team. We encourage you to be active in your care. The time you spend in the hospital before, during and after your BMT may seem endless, but try not to get discouraged. Patients seldom make daily progress by leaps and bounds. Each day will bring a small step forward or perhaps even one backward, or no change at all. This slow pace can depress patients who want desperately to get well, and it may also affect their loved ones. Plan to take one day at a time. Calendars and daily goal charts can help you to keep track of time, mark goals and record your blood counts as they rise. Patients often feel overwhelmed if they hear bad news or even no news. Any progress or positive news, no matter how small, can improve your spirits. Family members can boost your morale by pointing out days when you look better. You should know that all patients experience some setbacks; this is to be expected. Each person s recovery is individual, and it is important not to compare your progress with that of any other patient. 18

25 Guilt. Patients frequently feel guilty about being sick and unable to work, about their inability to take part in some family activities, or worry about being a burden to family and friends. This is a perfectly normal reaction. Going from a healthy, active lifestyle to one that is restricted by illness and all that it entails is very difficult. Your transplant team is here to help you and your family work through these issues and develop ways to lessen these feelings. Try to be reassured by the expectation that, after treatment and recovery time, you will begin to go back to your regular life. While you are recovering, be willing to accept offers of help at home and work. Loss of Control. A blood or marrow transplant is a physically debilitating experience. You will be in a fragile state of health for several weeks and will feel extremely weak and helpless. Walking without assistance, focusing on a book or TV program, following a conversation or even sitting up in bed may require more energy than you have to spare. The carefully regulated treatment regimen for a BMT may leave little room for you to express your own wishes and also leaves very little room for privacy. As your medical providers strive to give you the best care possible, you will find that your caregivers closely monitor personal issues, such as bathroom regimens, sleeping schedules and mealtimes. Because you will undergo many tests, medical personnel must enter your room often and at all hours, frequently interrupting whatever private time you may share with your loved ones. The rhythm of hospital life itself can be exhausting and frustrating. Patients who are used to being in charge, taking care of themselves or being the dependable one will find it very difficult to cope with this physical debilitation. The loss of control may both frighten and anger you. Again, this is normal; all patients experience these emotions to some extent. We can help you deal with many of these issues. You may find it beneficial to have a loved one as your advocate while you are weak, or to have a loved one or trusted nurse with you during procedures. A mild sedative can calm you and alleviate stress. Knowing that these feelings are a normal part of the transplant process may be reassuring. Patients have told us that it helps to make plans and set boundaries so they don t feel such a loss of control. Sometimes, even small things can help you feel more in control, such as bringing in belongings from home or enjoying some of your hobbies while you re in the hospital. Some patients have brought in golfing greens; others watch their own videos. Many keep a journal of everyday events. Don t hesitate to ask questions. Sometimes medical personnel assume that you know what is going on when you do not. You have the right to know everything that is or will be happening to you. Write things down as you think of them especially your questions. Ask your doctor for names of former BMT patients and/or their families with whom you can discuss your concerns, or for a support group you can attend. And don t forget to take one day at a time. 19

26 Your BPC Collection or Bone Marrow Harvest Typically, blood progenitor cells (BPCs) obtained through collection of your peripheral blood stem cells are used for an autologous BMT. Less often, your bone marrow will be harvested. You may recover your blood counts more quickly if you do not have anesthesia when your peripheral blood stem cells are collected. Peripheral Blood Stem Cell Collection As you read earlier, blood progenitor cells (BPCs) circulate in your bloodstream. They appear to be just like the stem cells found in your bone marrow, and they are capable of repopulating damaged bone marrow and restoring the process of blood cell growth and development (hematopoiesis). The BPC procedure is not painful, but takes three to four hours and will need to be done for one to five days on an outpatient basis. The registered nurse who will care for you during the process will explain the collection procedure to you. How to Prepare. Prior to the collection procedure, you will be given a medication called growth factor, which causes your bone marrow to increase its production of BPCs. These cells will be collected, preserved and given back to you after your conditioning regimen of chemotherapy and/or radiation. To prepare for your BPC collection, it s important that you maintain good nutrition. Calciumcontaining foods, such as milk or milk products, are good choices, unless you have been told otherwise. Avoid fatty and high-cholesterol foods. What to Expect. On the day of your BPC collection, you will report to Admissions, just as you have for your previous visits. You may be asked to go to the Hematology Neuro- Oncology Center first or you may be asked to go directly to the Apheresis Unit. Wear comfortable clothing that allows easy access to your long-term IV catheter. You are welcome to bring a friend or family member with you for company. You will be free to read, write, knit, etc. The Apheresis Unit has a TV, computer and CD player. You may wish to bring your favorite CDs. Lunch will be provided, but if you prefer to do so, you may bring your own food. BPCs are collected through your long-term IV catheter. First, the nurse will help you get comfortable in a bed or chair. Then, your catheter will be connected to the tubing of a leukapheresis machine, which draws blood from one tube of the catheter and returns it to your body through the other. The machine has a special feature called a centrifuge that spins the blood to separate and collect your BPCs as it passes through. Because the procedure returns your blood at the same rate that it is drawn, it is unlikely that your vital signs will change. However, your blood pressure may become low and you may feel lightheaded; if so, tell the nurse. You will be monitored closely and should this occur, it can be readily relieved. 20