Alloge BMT manual V1 - Roswell Park Cancer Institute

Dear Patients, Families and Friends:Welcome to Roswell Park Cancer Institute (RPCI). You, your child or someoneelse close to you may be considering an Allogeneic Blood or MarrowTransplant (BMT) at RPCI.Our Blood and Marrow Transplantation Center team has developed this manualto answer your questions and to serve as a source of important informationduring the various phases of the BMT process. Please read this manual carefullyand, for easy reference, bring it with you when you come to the hospital.Here at the nation’s first cancer research, treatment and education center, weperform blood and marrow transplants for pediatric and adult patients. At times,procedures may differ for pediatric patients. These circumstances are notedseparately throughout this manual.IntroductionUndergoing a blood or marrow transplant is a courageous endeavor requiring amajor commitment from patients and families. Please be assured that we willsupport you every step of the way.The patient and his/her family are our primary focus. If, at any time, you wantmore information or have specific questions, please do not hesitate to ask. Wewelcome your questions and want you to always feel free to talk with us.RPCI’s multidisciplinary team of cancer experts and its cutting-edge treatmentsmean that patients receive the best possible care available today. BMT researchis pioneered here, and our facility is accredited by the National Marrow DonorProgram as a Transplant, Collection and Apheresis Center.The members of RPCI’s BMT team know this is a difficult time. We will doeverything we can to soften the stressors of treatment and recovery. We striveeach day to treat our BMT patients with dignity and compassion. Each patientbecomes the most important member of the BMT team, and each patient’s familybecomes part of the RPCI family. We will work together to fight this battle.Sincerely,Your BMT Team

About Roswell Park Cancer InstituteOur Mission ...............................................................................1Putting Patients First................................................................1National Recognition ................................................................1Location, Maps & Directions ...................................................1Parking & Lodging....................................................................2Support Services ......................................................................4Clinical Trials.............................................................................5Understanding TransplantationWhy a Transplant?....................................................................7What is Bone Marrow? .............................................................7What is a Transplant?...............................................................8ContentsInformation for BMT DonorsAre You a Suitable Donor? ....................................................11Peripheral Blood Stem Cell Collection.................................11Bone Marrow Harvest.............................................................13Information for PatientsWe’re in this Together! ...........................................................15Your Health Care Team...........................................................15Preparing for Your Transplant ...............................................18RPCI’s Transplant Unit ...........................................................23Your Transplant & Recovery..................................................26Blood Cell Levels & Transfusions.........................................29When Your Blood Counts are Low........................................30Side Effects .............................................................................34Complications .........................................................................35Challenges & Responsibilities ..............................................42Your Discharge........................................................................43Resuming Daily Activities......................................................44When to Notify Your Doctor...................................................50Information for Platelet Donors ........................................51BMT Resources and Financial Assistance......................55Laboratory Tests and Procedures....................................59Medications ........................................................................62Glossary of Terms and Abbreviations.........................67-76

Our MissionSince 1898, the physicians and scientists at Roswell Park Cancer Institute inBuffalo, New York, have focused their clinical and intellectual expertise onone goal: to conquer the complex group of diseases called cancer. We arededicated to:• providing total care to the cancer patient.• conducting research into the causes, treatment and prevention ofcancer.• educating the public and the next generation of researchers and medicalpractitioners.Putting Patients FirstRPCI brings together, on one campus, a staff of physicians, scientists,oncology nurses, allied health professionals and technicians, all devoted tocancer care and research. Scientific education occurs at every level,providing an environment that nurtures state-of-the-art basic and appliedclinical research. Our patients are the first to benefit from progress made byour scientists.About Roswell ParkBeyond research, outstanding patient care is a hallmark of our work at RPCI.Recent surveys indicate that 98 percent of our patients felt their experienceshere met or exceeded their expectations. The same number of patients saidthey would be willing to return to RPCI should their medical condition warrantit, and would be extremely or very likely to recommend RPCI to others.National RecognitionRPCI 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 centerof excellence by the National Cancer Institute (NCI). RPCI served as a modelfor the NCI’s cancer centers program, developed throughout the countryfollowing the adoption of the National Cancer Act in 1971. At these highlyspecialized centers, the collaboration of basic research and clinical medicineyields the greatest progress in the war against cancer. Comprehensivecancer centers conduct programs in all three areas of research – basicscience, clinical, and cancer prevention/control – as well as programs incommunity 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 qualityof patient care and provide best practice guidelines and measurements.Location, Maps & DirectionsRoswell Park Cancer Institute is located in Western New York in the heart ofthe city of Buffalo. RPCI is easily accessible from the Buffalo Niagara1

International Airport, major highways, including the New York State Thruway (Interstate 90),and Canada via the Peace Bridge.Buffalo, “the City of Good Neighbors,” isknown for its sense of community andhospitality, an atmosphere clearlyreflected at RPCI.To reach Roswell Park Cancer Institute:• From Points East of Buffalo. Takethe New York State Thruway (I-90)to Exit 51W (33W). Exit 33W atLocust Street. Turn right at the firsttraffic light (Michigan Avenue).Continue two blocks to CarltonStreet; turn left. Follow signs toRPCI’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 andcontinue on Elm until it ends atGoodell Street. Turn left ontoGoodell and continue to EllicottStreet; turn right. Take Ellicott toCarlton Street; turn right. Followsigns to RPCI’s Main Entrance.Bus and rail lines are convenient toRPCI. The bus station is located at 181Ellicott Street. Visitors may take the No.8 Main Street bus line to RPCI. ForMetro Rail, use the Allen/Hospital Stationat Main and Allen Streets near RPCI. For schedules, fares and routes, call the NiagaraFrontier Transportation Authority at 716-855-7211 or visit www.nfta.com/metro on the Internet.If you have transportation problems or any questions about travel to and from RPCI, contactour Department of Social Work and Case Management or your local unit of the AmericanCancer Society at 1-800-743-6724.Parking and LodgingThe parking ramp at RPCI is located at the corner of Michigan Avenue and Carlton Street. The2

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 eachtime you exit. Discount information for outpatients and also for inpatients on the day ofadmission and discharge is available at the information desk, located in the hospital lobby.Monthly key cards are available. For a set fee, the key card enables you to enter and exitas often as you like. Family members of BMT patients might be eligible for feereimbursement through the American Cancer Society or The Leukemia & LymphomaSociety.Parking ramp office hours are from 7 am to 4:30 pm, Monday through Friday. Monthlyparking permits may be purchased between the first and 10th of each month at the rampoffice.On-street parking is strongly discouraged. RPCI cannot assume responsibility for parkingtickets 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 afterdark.Comfortable, affordable housing for cancer patients and their families is available nearby.Convenient hotels and motels, including the adjacent DoubleTree Club Hotel BuffaloDowntown, offer special rates to RPCI patients and their families. For further information,call the Department of Social Work and Case Management.• DoubleTree Club Hotel Buffalo Downtown, 125 High Street, is a 100-room, 12-suite, full-service facility connected to RPCI. Features include in-room kitchenettes, alaundry, fitness and business centers, complimentary parking, escort service,restaurant, and medical rates based on length of stay. For reservations, call 716-845-0112 or toll-free, 1-800-222-TREE (8733).Three hospitality houses also are convenient to RPCI:• Kevin Guest House, within walking distance of RPCI at 782 Ellicott Street, offers lowcostlodging to cancer patients and their families. Established in 1972, this is theoldest hospitality house in the United States and was the prototype for 60 RonaldMcDonald Houses around the world. Kevin Guest House also has some apartmentsfor rent to BMT patients and their caregivers. Contact your social worker forinformation on financial assistance and possible Medicaid or insurance coverage. Theguest house phone is 716-882-1818.• Hope Lodge, located at 197 Summer Street in Buffalo, provides free overnightaccommodations to cancer patients and their families. The Hope Lodge is owned andoperated by the American Cancer Society, New York State Division. Phone 716-882-9244.3

• Ronald McDonald House, also in Buffalo at 780 West Ferry Street, provides low-costlodging and emotional support to the parents of pediatric and adolescent patients.This house is owned by the Western New York Children’s Health Services. Medicaidsometimes covers the cost. Phone 716-883-1177.Support ServicesASK-RPCITrained information specialists will answer any questions on cancer and the servicesavailable at RPCI, and provide literature, resources and referrals to callers. The toll-freenumber is 1-877-ASK-RPCI (1-877-275-7724). Phone lines are staffed Monday - Thursday,9 am - 8 pm, Friday, 9 am - 5:30 pm, and Saturday 10 am - 2 pm. The e-mail address isaskrpci@roswellpark.org.Community Cancer Resource CenterRPCI’s Community Cancer Resource Center (CCRC) is temporarily located within theSunflower Café, in conference room A, on the first floor. It is staffed by trained informationspecialists, stocked with cancer resources, and provides access to computers. Informationon cancer – how to find, interpret and personalize it – is the CCRC’s mainstay. But thehomey 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-houseboutique provides patients with free wigs, scarves and hats.InsuranceRPCI financial counselors manage the insurance verification process for potential BMTcandidates. Your insurance company will be contacted to verify that BMT is a coveredbenefit and what level of benefits is available. Patients who have inadequate or noinsurance coverage may be advised of other options. You will be notified of your transplantauthorization 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 thatbilling is accurate and payments are issued directly to RPCI (when applicable), it isimportant that you bring your insurance identification card(s) with you and complete theAssignment of Benefit form during registration in the Patient Access Department.Most insurance companies have precertification and utilization reviewrequirements. A member of RPCI’s Patient Access Department will precertify youradmission with your insurance company.A member of RPCI’s Department of Social Work and Case Management will conduct aconcurrent review, if required, by contacting your insurance company regularly while youare an inpatient to verify medical necessity and provide any information required.4

Patients from outside the United States must speak to a financial counselor to pre-arrangepayment before any services or treatment.Questions regarding the insurance verification process, billing, financial arrangements orother concerns can be directed to your financial counselor.Pastoral CarePastoral care staff at RPCI work with physicians, nurses and other members of thepsychosocial oncology team to ensure the total care of patients and their families. Theyprovide pastoral counseling and minister to the spiritual, emotional and psychosocial needsof patients, family members and friends at all stages of the treatment process.Episcopal, Protestant and Roman Catholic chaplains provide sacraments andreligious literature upon request. A rabbi is available to assist with rituals and traditions ofthe Jewish faith. Area clergy of most faith denominations are available to support patientand family needs at RPCI.Pastoral care staff members visit inpatients and outpatients daily. Chaplains also areavailable around the clock to respond to the urgent spiritual and emotional needs ofpatients.Clinical TrialsBecause cancer research is critical to RPCI’s mission, you may be asked to participate in aclinical trial, which is a study to evaluate a new treatment. The participation of patients inclinical trials is important to advancing knowledge of the best ways to treat diseases suchas cancer.The search for effective cancer treatments begins in the laboratory. No matter howpromising a treatment appears there, however, scientists are unable to predict exactly howeffective 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 bedrawn.Clinical trials must follow a protocol, a carefully designed plan that details what will bedone, how and why.There is a chance that a new treatment will be disappointing. However, researchers havevery good reason to believe that the new therapy will be as good as, or better than, currenttreatments. New treatments almost always build on what has worked in the past. By thetime a new therapy is ready for clinical trial, it has undergone a thorough research andethical review.Patients who participate in clinical trials have the best opportunity to receive front-line,5

leading-edge treatment. If a new treatment is successful, they are the first to benefit. Thesepatients also are helping future cancer patients.If you are eligible and decide to participate in a clinical trial, you will be asked to sign aninformed 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 isalways voluntary. You may withdraw from a study at any time without concern that yourchoice will affect your future care. You will continue to receive the best treatment we haveto offer.Research conducted at RPCI is carefully reviewed and approved by a clinical investigationcommittee of physicians, scientists, nurses, psychologists, clergy and lay people. Yoursafety and welfare are the committee’s primary concerns.6

Why a Transplant?A blood or marrow transplant (BMT) allows doctors to aggressively treat agrowing range of diseases. The transplanted blood or marrow stem cellsreplace diseased or damaged bone marrow. BMTs have been used to treatpatients who have congenital (present at birth) and acquired disorders, as wellas those who have blood-related (hematologic) and solid tumor cancers.In patients with leukemia and aplastic anemia, the stem cells in the bone marrowdo not work as they should. In leukemia, too many immature or defective bloodcells are produced. They interfere with the production of normal blood cells, spillover into the bloodstream and may invade other tissues. In aplastic anemia, thebone marrow stops producing blood cells.Strong doses of chemotherapy and/or radiation are needed to destroy thesedefective stem cells and the abnormal blood cells they produce. However, thesetherapies can also destroy normal bone marrow. Likewise, very powerfultreatments, which are needed to effectively treat some soft tissue cancers(called lymphomas) and other types of solid tumor cancers, can destroy healthybone marrow.A BMT enables doctors to treat these diseases aggressively with chemotherapyand/or radiation, and then replace the diseased or damaged bone marrow aftertreatment. Although a BMT does not guarantee that the disease won’t recur, aBMT can increase the likelihood of a cure or at least prolong the period ofremission in many patients.A BMT never is taken lightly. The transplant is an attempt to cure a potentiallyfatal disorder. A BMT is a very difficult process and requires a great deal ofcommitment from both patient and family.Understanding TransplantationWhat is Bone Marrow?Bone marrow is a spongy meshwork material; it is found in the top section ofyour long bones, pelvic and shoulder girdles, breastbone, the ends of your ribsand the flat bones of your skull.Blood cells are made in the bone marrow. You have several types of bloodcells, each with its own special job to do. Blood cells are produced and grow inthe same general way as other cells. Most tissues and organs in your bodycontain a supply of immature cells called stem cells. When your body needs newcells to replace worn out or damaged cells, the stem cells divide, mature andbecome fully developed and functional. When you no longer need them, theproduction 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 controlshow and which types of blood cells your body produces. Blood cells are not7

eleased from your bone marrow into your bloodstream until they are developed and readyto do the job they are supposed to do.One special type of blood cell (called blood progenitor cells or BPCs) that circulates in yourbloodstream appears to be similar to the stem cells found in your bone marrow. BPCs canrepopulate damaged bone marrow and restore hematopoiesis; they can be collected fromyour bloodstream using a leukopheresis machine. When you read the term “blood and/ormarrow transplant” in this guide, the word “blood” usually refers to BPCs, which are alsosometimes called peripheral blood stem cells.What is a Transplant?Transplantation is the transfer of living tissues or organs from one part of the body toanother or from one individual to another. A BMT should be thought of in terms of atransfusion rather than a surgical procedure or operation. The replacement marrow (orBPCs) 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 doctorrecommends depends on your age, the type of cancer or disease you have, other diseasecharacteristics and whether a suitable related donor is available.In an allogeneic transplant, the type needed for your disease, the patient receivesreplacement marrow or stem cells from another person. Sometimes, the graft launches anattack on the recipient. This is called graft versus host disease (GVHD).In an autologous BMT, a patient is his/her own donor. The advantages of autologous BMTare elimination of the danger of GVHD and the possibility of an easier recovery period.Autologous BMTIn an autologous BMT, a patient’s own bone marrow and/or stem cells are removed beforehe/she receives chemotherapy and/or radiation. After it is removed, the bone marrow mayneed to be processed to remove lingering cancer cells or isolate stem cells. It is thenfrozen and stored until treatment is finished, then thawed and given back to replace themarrow that was destroyed by treatment.Autologous BMT is possible when the disease affecting the bone marrow is in remission orthe condition being treated does not involve the bone marrow.Allogeneic BMTIn an allogeneic BMT, the patient receives stem cells, bone marrow or, at times, umbilicalcord blood from a related or unrelated donor.The commitment required from patient and family is quite heavy. Patients should expect aminimum of a year’s commitment to the process. Even after leaving the hospital, allogeneicBMT 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.8

Donor Compatibility IssuesIf 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 white blood cells and other cells, called humanleukocyte 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 wehave (usually six are checked). Other than a twin (which is a perfect match), the best match is a personwho has all six matching antigens. Even so, because the transplant comes from another person, thereis 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 greaterincompatibility, 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 tobe perfect matches because they have identical genetic types.• Matched Related Transplant. Donor and patient share the same or similar genetictypes – usually a brother or sister (rarely a parent or cousin). The chance of matchinga brother or sister is 25% for each sibling. Typing of the siblings is performed if theyare healthy and according to a priority based on the sex of the patient and potentialdonors, as well as age.If there is not a complete match, the term “mismatched” is used. A complete match ispreferred, but in certain situations, a related donor and patient can be mismatched tosome degree. If there is too much mismatching, severe, usually fatal, GVHD willoccur.• Matched or Partially Matched Unrelated Transplant. Donor and patient are not related.Some of us share similar genetic backgrounds, so it is possible that someoneunrelated may have a similar genetic type.• Cord Blood Transplant (CBT). Stem cells are obtained from the umbilical cord of adonor to a patient. Umbilical cord blood, like bone marrow, is rich in stem cells. Thesestem cells can be collected from related or unrelated donors, frozen and infused into apatient. CBT has been performed mainly on children and young adults weighing lessthan 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 forthe 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 orbone marrow. In addition, there may be a higher risk of infection in adults receiving cordblood transplants.9

National Marrow Donor ProgramThe advent of the National Marrow Donor Program (NMDP) and other internationalregistries has made finding similar matches more likely for those people who do not havea related donor, but require an allogeneic BMT. Roswell Park Cancer Institute is anaccredited Transplant, Collection and Apheresis Center for the NMDP. To learn more aboutthe National Marrow Donor Program, call 1-800-MARROW-2 (1-800-627-7692) or accessthem on the Internet at www.marrow.org.10

Being a donor for a blood or marrow transplant is a very generous thing to do,whether donating for a loved one or as an anonymous donor for someone youdon’t know.Stem cells for transplant patients can be obtained in two ways:• Bone marrow harvest or• Collection of peripheral blood stem cells (also called blood progenitor cells,or BPCs).Currently, peripheral blood stem cell collection is preferred for adults because thetransplant procedure is easier for the recipient and the transplanted stam cellsseem to recover more quickly. The attending physician can discuss the pros andcons of each procedure.In pediatric cases, however, bone marrow harvest is the usual choice. Donorsare typically pediatric siblings, and the procedure is less invasive for the donor.Are You a Suitable Donor?Before someone is accepted as a stem cell donor, safety for both the donor andrecipient must be confirmed. To determine your eligibility, pre-evaluation andconsultation sessions are conducted on an outpatient basis through RPCI’sHematology/Neuro-Oncology Center.During your first visit to RPCI as a possible donor, a complete medical history willbe taken, including questions about any preexisting medical problems, potentialallergies and if you have a history of infectious diseases. A physical examinationwill be done and tests will be given to ensure you are physically able to endurethe donation of BPCs or bone marrow. You’ll have an electrocardiogram (EKG)and a chest x-ray. Blood samples will be taken to check for infectious diseaseand to perform tissue typing (also called HLA or human leukocyte antigentesting). HLA tests show if your BPCs or marrow are a match for the person whoneeds a transplant.Information for BMT DonorsWhen cleared to become a stem cell donor, you will meet with the transplantteam to learn how to proceed. You will need to sign an informed consent formprior to the collection or harvest.Peripheral Blood Stem Cell CollectionBPCs, which circulate in the bloodstream, appear to be the same as the stemcells found in bone marrow and are capable of repopulating the bone marrowand restoring the process of blood cell growth and development called11

hematopoiesis. If you will be donating BPCs, this will give you an idea of the possiblesteps:• To help drive your BPCs from your bone marrow into the bloodstream so they can becollected, we will arrange for you to receive shots of colony stimulating factors (G-CSF/Neupogen® or GM-CSF/Leukine ® ) just under your skin (subcutaneousinjections).• You will meet with the pheresis nurse to determine whether it is best to have the BPCscollected through your veins or through a special catheter. If a catheter is chosen, youwill be taken to the operating room, receive local anesthesia, and a small incision willbe made in your neck or upper chest. The catheter will be tunneled under your skinand placed in one of your major veins, where it will stay until the donation is complete.How to Prepare. Maintain good nutritional habits as you prepare for BPC collection.Calcium-containing foods such as milk or milk products are good choices, unless advisedotherwise by a doctor. Avoid fatty and high-cholesterol foods.Do not take aspirin or any aspirin-containing products for 10 days and do not takeibuprofen or ibuprofen-containing products for three days before the collection procedure.What to Expect. BPC collection is done on an outpatient basis, takes approximately threeto four hours, and generally requires between one and five daily sessions. The collectionprocedure is not painful, but you may notice that your bones are aching from the G-CSF/GM-CSF shots. The area around the catheter may be tender. These side effectsusually go away in a few days.Wear comfortable clothing when you come to have your BPCs collected. You are welcometo bring a friend or family member for company, and will be free to read, write, knit, etc.The Apheresis Unit has a TV, radio and tape player. Lunch will be provided, but you maybring additional snacks.To begin the collection, first, the nurse will help you get comfortable in a bed or chair. If youhave a catheter, it will be connected to the tubing of a leukapheresis machine, which drawsblood from your body through one tube and returns it into another. If you do not have acatheter, the nurse will put a needle into your vein, and intravenous tubing will connect youto the machine, whicn is also called a cell separator. It has a centrifuge that spins theblood as it passes through, to separate and collect the BPCs. Because the procedurereturns blood at the same rate as it is drawn, there rarely are any changes in how you feel.Occasionally, your blood pressure may drop and you might feel lightheaded. The nurseshould be informed as this can be remedied. You will be monitored closely throughout theprocedure.A small amount of anticoagulant is added to your blood to keep it from clotting as it isdrawn into the machine. The anticoagulant removes calcium from your blood so you mayfeel a tingling sensation in your fingers, toes or around your mouth. This is harmless, butthe tingling may continue for a few hours after the collection. A few supplements such asTums ® , which contain calcium, usually provide relief.12

You can resume normal activities each day, but if you have a catheter, you should avoidvigorous physical exercise and activities such as weight lifting until the catheter has beenremoved.Bone Marrow HarvestHarvesting bone marrow is usually the preferred method of collection for pediatric donors.Donating bone marrow poses virtually no danger to you as the donor, however, bonemarrow collection is done under general or spinal anesthesia, and any anesthesia posessome risk. Before you are admitted to RPCI, you will meet with an anesthesiologist todiscuss which type of anesthesia you will receive. The procedure will be explained to youin detail, and you will be required to sign an informed consent form for anesthesia.How to Prepare. In preparing for the harvest procedure, do not take aspirin or any aspirincontainingproducts for three days before the collection procedure. Shower or bathe theevening before the procedure and do not eat or drink after midnight to ensure an emptystomach when the anesthesia is given. This helps prevent vomiting during the procedureand is for your safety. If you eat or drink after midnight, the procedure may be delayed.What to Expect. When you are admitted, you will be asked to sign an informed consent forbone marrow harvest. Before being taken to the operating room on the morning of yourmarrow donation, you must:• Dress in the hospital gown provided.• Empty your bladder.• Remove jewelry, hairpins and hairpieces.• Remove dentures or partial plates.• Remove makeup and nail polish.• Remove eyeglasses or contact lenses.An intravenous (IV) line will be inserted into your arm or hand to give fluids during andfollowing the procedure. The IV will be removed when you are able to drink fluids again.Just before being taken to the operating room, you may be given a shot to make you feelsleepy.In the operating room, all doctors and nurses will be wearing gowns and masks. Thedoctors from the BMT program perform the bone marrow harvest procedure.After you are asleep, bone marrow will be harvested by inserting a needle through the skininto the inner cavity of the back of your pelvic (hip) bone. BPCs and some blood will bewithdrawn through the needle. The needle will be inserted into the skin once or twice oneach side your pelvic bone. When the procedure is completed, a pressure dressing will beplaced over the harvest sites to help prevent bleeding.13

The bone marrow harvest procedure usually takes two to three hours. Generally, three tofive percent of a donor’s bone marrow cells are collected, along with some blood. Thebone marrow is filtered and will be used in the allogeneic BMT within 24 to 48 hours ofcollection.The harvest procedure affects only your red blood cell count. Red cells can be replacedthrough blood transfusions if your doctor determines this is necessary. If you are an adultdonor, you may receive a unit of your own blood that was removed from the harvestedbone marrow. If the doctor determines you need additional blood transfusions, you willreceive matched blood from the RPCI Blood Bank. This is rarely necessary.Pediatric donors usually are given iron supplements for one month after harvest.When the harvest procedure is completed, you will be taken to the recovery room forapproximately one to two hours. The nurse in the recovery room will check your bloodpressure, pulse and breathing patterns approximately every 15 minutes. The pressuredressing will be checked to be sure there is no bleeding. When fully awake, you will betaken to your room.You may feel tired and want to rest for a few hours. Your throat may be dry and sore fromthe tube used during anesthesia, but do not drink anything until the nurse or doctorapproves. Tell the nurse if nausea develops.After receiving anesthesia, it is a good idea to change your position in bed, breathe deeplyand cough frequently to expand your lungs and help prevent infection. You should continueto do this until you are discharged.The harvest sites will be sore and you might have pain; if so, tell your nurse. Your doctorwill have ordered pain medication for you.You may be discharged from RPCI later in the afternoon if your medical condition is stable.A family member or friend must be available to take you home. You will be given aprescription for pain medicine to use at home.The pressure dressing should be removed the day after the procedure. Harvest sitesshould be kept clean and covered with a bandage for about one day after the pressuredressing is removed. If Steri-Strips® were applied, they should be left on until they comeoff by themselves.You may shower, but avoid tub baths for 48 hours. Check the harvest sites each day forredness, increased tenderness, swelling and drainage. If any of these symptoms develop,please call 716-845-2300 (Switchboard) for more information.You can resume normal activities based on your comfort level. The nurses and doctors areavailable to answer any questions.14

We’re in This Together!You and your family may have many questions about what to expect during theactual BMT process. You will find answers to many of your questions here. Wealso urge you to share your concerns and questions with members of your BMTteam.The process of a blood or marrow transplant is very complex. All of theresponsibilities and possibilities, coupled with the prolonged aspects of recovery,may feel overwhelming to patients and their families. Here at Roswell ParkCancer Institute, we are committed to helping you each step of the way bystaying attuned to your medical, emotional and physical needs.Your Health Care TeamMany people will be helping you through your BMT procedure. Together, theymake up your multidisciplinary BMT health care team. Your team members areconstantly communicating to ensure that you receive the best possible care. Weconsider you and your family to be important parts of this team, and so weencourage you to ask questions and share information with us. Communicationis 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 andemerging side effects promptly and know how to react swiftly and properly.Psychological support throughout the BMT process also is important and will beavailable to you and your family.Information for PatientsPhysiciansBMT physicians are experts and have ultimate responsibility for patient care.Your clinic physician will meet with you to develop your specific treatment planand will serve as your attending physician during both inpatient and outpatientcare.Nurse Practitioners (NP)Certified NPs are licensed to obtain patient histories, perform physicalexaminations and certain diagnostic procedures, and prescribe medications. YourNPs have specialty training in BMT and work closely with your attendingphysician.Physician Assistants (PA)PAs are also licensed to obtain patient histories, perform physical examinationsand certain diagnostic procedures, and prescribe medications. They havespecialty training in BMT and work under the supervision of your attendingphysician.15

Transplant Unit Staff NursesBMT staff nurses are registered nurses with specialty training in caring for BMT patients.They will encourage you and your family to be actively involved in your care, answerquestions and provide support, as needed.Blood and Marrow Transplant CoordinatorsYour BMT coordinator, a key contact and resource person, will shepherd you through yourpre-transplant evaluation, admission and stem cell collection, and will help smooth thetransplant process prior to admission.Financial CounselorsYour financial counselor is an account representative available for any insurance orfinancial questions or problems. You should contact your financial counselor if you changeinsurance coverage or receive any bill from RPCI or the Clinical Practice Plan that you donot understand.Registered DietitiansRegistered dietitians will monitor your nutritional status, and offer options to help youincrease your dietary intake as appropriate.PharmacistsYour pharmacist is a clinical specialist on medications who will provide drug information toyou, your team members and your family. He or she will verify your medications anddosages to prevent drug interactions and reduce side effects when possible. Yourpharmacist will carefully monitor your drug intake so that adjustments in your medicationsmay be ordered if needed. You may be counseled about your medications beforedischarge, and may receive a medication organizer and timetables to assist you with takingyour medications correctly at home.PsychologistsYour psychologist is involved with many aspects of your care, including individual or familytherapy tailored to your specific needs. They will help you develop strategies for moodchanges, cognitive changes, stress reduction, sleep difficulties and coping with lengthyhospital stays.Medical Social WorkersYour 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 yourdiagnosis and need for an altered lifestyle. If you need help to follow your doctor’s medicalorders 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 communityresources and can provide referrals in such areas as entitlements, legal assistance,counseling and health care proxies.16

Nurse Case ManagersYour nurse case manager will coordinate every aspect of your BMT and help you, yourfamily and team members develop a comprehensive plan of care. When you are ready togo home, she or he will help you obtain services, including home care services ordered byyour physician, subject to insurance coverage, availability and appropriateness.Child Life SpecialistsIf your son or daughter is having a BMT, a child life specialist will offer activities andservices 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 TherapistsYour physical therapist will help you develop and maintain strength and endurance througha specially designed daily exercise program.Occupational TherapistsYour occupational therapist will provide leisure activities and supportive visits to help youand your family deal with long periods of hospitalization. Splints, slings or braces can befitted 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 orendurance, she or he will teach you, before you are discharged, how to simplify work andconserve energy during daily activities.DentistsYour dentist will conduct a comprehensive oral exam before your BMT to look for anyconditions that could compromise your transplant – and eliminate problems before theyarise. Good oral hygiene plays a key role in your successful transplant. The dental teamwill 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 dentistwill fill any cavities or extract teeth as needed.Respiratory TherapistsYour 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 youare found to have a breathing disorder, your situation will be evaluated so that you mayreceive the care and treatment you need. If your discharge plan includes oxygen orrespiratory therapy, your therapist will work closely with the rest of the transplant team toteach you what to do to take care of your specific needs.Clergy and Pastoral CaregiversPastoral care is available to you and your family around the clock. Any member of theRPCI staff can call a chaplain for you. The pastoral care staff can arrange specific referralsto a church, synagogue, mosque or minister of your faith.17

Preparing for Your TransplantSuccessful blood and marrow transplantation requires healthy blood and/or bone marrowfor infusion. In addition, you must be healthy enough to endure the rigors of the BMTprocess. To determine whether you are a good candidate, your doctor will consider yourage, general physical condition, diagnosis and stage of disease.One very common and realistic concern is how to deal with the extended period ofhospitalization.The average period of hospitalization for allogeneic BMT patients is from three to sixweeks. Your stay at RPCI will depend upon your specific needs. Preparing for such alengthy hospital stay can be extremely difficult. You will have to decide which priorities youshould address. Remember, the minimum hospital stay could change because timingdepends on recovery of the blood or bone marrow, complications that may arise and manyother factors. Make preparations for a longer stay than anticipated. That way, you won’t bediscouraged by an extended stay, but could find yourself uplifted by the pleasant surpriseof an earlier than expected discharge.Although still extremely challenging, undergoing a BMT today is not quite as difficult as inthe past. This is due to advances in medical technology, better supportive care, newmedications, less intense regimens, shortened hospital stays and the ability to givemedications in the outpatient setting. Our chemotherapy and radiation regimens have beenrefined to be as beneficial as possible for our patients, with the least possible toxicity (sideeffects).Pretreatment EvaluationDuring your first visit to RPCI, a complete medical history will be taken. This will includeconfirmation of your diagnosis, a detailed description of your previous treatments, theresults of those treatments and your reactions to them. Any other existing medicalproblems will be evaluated, including any history of allergies and infectious diseases. Youwill 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 yourdisease. You may require additional courses of chemotherapy and/or radiation before beingconsidered for a BMT.Before the transplant process begins, we must ensure that your heart, lungs, kidneys andliver are strong enough to tolerate the side effects of chemotherapy and other medicationsthat may be used during the procedure. Before the transplant, you will have a series ofoutpatient tests to determine your current state of health. These tests must be completedwithin 30 days prior to your admission for transplant. Listed below are the possible testsyou may undergo, depending on your disease, your transplant protocol, and whether youhave had these tests previously.18

• Chest x-ray• Bone marrow aspirationand biopsy• Lumbar puncture• Blood tests• CAT scan/skeletal survey• Pulmonary function test• ECHO/EKG/MUGAChecks your lungs for disease.Checks your bone marrow for diseaseand genetic information.Checks the fluid surrounding your brain andspinal cord for disease or infection.Checks your blood counts, as well as liver, kidney,and immune system function; also checks forinfectious 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 youryour heart is working.Central Intravenous Catheter PlacementBefore your transplant, you will be given a central intravenous (IV) catheter, if you do notalready have one. This IV is a special catheter inserted by a doctor into a large vein in yourchest so that you do not have to endure repeated needle sticks. You will be given asedative 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, bloodproducts and other medications. The catheter will remain in place for the duration of yourtransplant and for as long as needed after discharge.You and/or a family member will receive instructions on how to care for and clean thecatheter.Patient Education MeetingsThe BMT process will be reviewed with you and your loved ones at special informationalmeetings. 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 isrecommended, and its possible risks, benefits and expected side effects. We will answerany questions that you, your family and/or friends may have, help you to understand theinformed consent form, and discuss the risks and benefits of alternative treatments. Thesediscussions 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 areactively involved in all decisions involving your care.19

Caregiver for the Post Transplant PatientPrior to work-up/evaluation for transplant you will be expected to have/secure a primarycaregiver for your post discharge period. Your caregiver will be expected to assist you withyour daily needs including ensuring medication compliance, transportation to and fromclinic visits, meal preparation, assistance with activities of daily living and daily householdchores.Your designated caregiver should be with you at all times after you are discharged from thehospital 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 androtate within a schedule to assist you.Psychosocial EvaluationYou will be evaluated by a medical social worker to determine whether there areany psychological factors that would prevent you from having a BMT. Thestability of your support network will also be evaluated to determine the extent to whichyour spouse, parents, siblings or others are able to provide necessary emotional andpsychological support.If needed, the medical social worker may involve medical psychologists in evaluating yourpsychosocial needs and may collaborate with them to develop an effective plan of care.Transplant Orientation ProgramYou and your caregivers will be expected to attend the Caregiver meeting held by theDepartment. of Psychosocial Oncology. These meetings are held twice a month, on the 1stTuesday and the 3rd Thursday for your convenience. This required meeting will be inaddition to your family meeting held before your admission for transplant.Your family meeting (also mandatory) will be attended by the many disciplines thatcomprise the Bone Marrow Transplant team including nutrition, pharmacy, social work,psychology, physical therapy, financial, nurse management, transplant physician and yourtransplant coordinator.Social Work Consultation/Advanced Directive and Health Care ProxyYou will meet your BMT social worker before you are admitted. This experienced healthcare professional can direct you and your family to local resources, acquaint you with theBMT unit and provide emotional support. The social worker can answer your questionsabout RPCI, the BMT unit, insurance, and any other questions you may have. She or hecan also help you complete your Health Care Proxy and Advanced Directive forms.The Health Care Proxy identifies one or two individuals who understand your treatmentgoals and can represent your wishes should you be unable to do so. A Health Care Proxyis not completed for pediatric patients, as their parents act as proxies.20

The Advanced Directive instructs your representatives as to your wishes should you beunable to express yourself. These forms are available at the BMT unit and from the PatientAccess Department.Dental ExamYour 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 thatrequire treatment prior to your BMT. The dentist will make suggestions for your care andadvise you on changes that may occur in your mouth during and after your transplant.Nutrition and ExerciseBefore your transplant, it is important to maintain your nutritional intake by eating a wellbalanceddiet, adequate in protein and calories. No food restrictions are needed unless youare 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 yourcirculation. Do not overdo – this can be more harmful than no activity at all. You should notbe in pain during or after your exercise. If you have any questions regarding nutrition orexercise, please speak with your doctor or transplant coordinator.Smoking and AlcoholIf you smoke, it is important that you quit to minimize risks to your health. We ask that youstop smoking now, while you are considering a transplant; otherwise you will increase yourchance of dying from complications. Likewise, smoking after your transplant aggravatesyour risk of developing and dying from pneumonia.The existence of liver disorders before your BMT can increase your risk of developingsevere liver complications during or after BMT. Various tests are done before, during andafter 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 ConsiderationsMale 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 RegionalCryobank and Andrology Laboratory at 585-275-2491 or the Infertility and InvitroFertilization Medical Associates of Western New York at 716-839-3057.If you are a female patient concerned about fertility issues, please talk with your doctor oranother member of your BMT team.Family and Personal ConcernsWe understand that you may miss physical contact with your family. We encourage familymembers to stay with you, or nearby, during your hospitalization, and to visit – as long asthey are healthy.21

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 availableto provide support to them during this time. We also encourage them to be attentive totheir own needs.Special precautions will be taken before and after the BMT to protect you from infectionwhile your immune system is suppressed. You may feel lonely and isolated. Addingpersonal touches to convert your hospital room into your own special area may help; manypatients 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 storesor museums visited, plays or movies that they have seen, the latest gossip from work orschool – anything that brings the world to you will make you feel less isolated and cut offfrom normal life.Emotional ConcernsHaving 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. Therange of emotions and mood swings, the limited activity and the loss of privacy can beoverwhelming for some patients. Most patients have difficulty with concentration andmemory at some point during the transplant process. These feelings are completelynormal. Expressing your feelings, even unpleasant ones, helps with healing.Stress. Having information and knowing what to expect will enable you to cope better withstressful situations. We want you to ask questions and seek help if you need it. Becausesubtle day-to-day developments in your coping, mood and general adjustment may not beimmediately apparent to your medical and support staff, we rely to a great extent on youand 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 atall. This slow pace can depress patients who want desperately to get well, and it may alsoaffect their loved ones.Plan to take one day at a time. Calendars and daily goal charts can help you to keep trackof time, mark goals and record your blood counts as they rise. Patients often feeloverwhelmed if they hear bad news – or even no news. Any progress or positive news, nomatter how small, can improve your spirits. Family members can boost your morale bypointing out days when you look better.You should know that all patients experience some setbacks; this is to be expected. Eachperson’s recovery is individual, and it is important not to compare your progress with that ofany other patient.22

Guilt. Patients frequently feel guilty about being sick and unable to work, about theirinability to take part in some family activities, or worry about being a burden to family andfriends. This is a perfectly normal reaction. Going from a healthy, active lifestyle to one thatis restricted by illness and all that it entails is very difficult. Your transplant team is here tohelp you and your family work through these issues and develop ways to lessen thesefeelings. 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 acceptoffers of help at home and work.Loss of Control. A blood or marrow transplant is a physically debilitating experience. Youwill be in a fragile state of health for several weeks and will feel extremely weak andhelpless. Walking without assistance, focusing on a book or TV program, following aconversation 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 toexpress 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 yourcaregivers closely monitor personal issues, such as bathroom regimens, sleepingschedules and mealtimes. Because you will undergo many tests, medical personnel mustenter your room often and at all hours, frequently interrupting whatever private time youmay share with your loved ones. The rhythm of hospital life itself can be exhausting andfrustrating.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 ofcontrol may both frighten and anger you. Again, this is normal; all patients experiencethese emotions to some extent.We can help you deal with many of these issues. You may find it beneficial to have a lovedone as your advocate while you are weak, or to have a loved one or trusted nurse with youduring procedures. A mild sedative can calm you and alleviate stress. Knowing that thesefeelings 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 sucha loss of control. Sometimes, even small things can help you feel more in control, such asbringing in belongings from home or enjoying some of your hobbies while you’re in thehospital. 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 youknow what is going on when you do not. You have the right to know everything thatis or will be happening to you. Write things down as you think of them – especiallyyour questions. Ask your doctor for names of former BMT patients and/or theirfamilies with whom you can discuss your concerns, or for a support group you canattend. And don’t forget to take one day at a time.23

RPCI’s Transplant UnitOur state-of-the-art Blood and Marrow Transplantation Center is located on the hospital’sfifth floor. All 28 patient rooms are private, and all rooms and hallways are High EfficiencyParticulate Free Air (HEPA)-filtered.Each room has a viewing window and some rooms have a camera to enable the nursingstaff to monitor your situation more closely, if needed.A solarium and restroom facilities for your family and visitors are also located on the fifthfloor. The solarium is comfortably furnished and has a refrigerator, microwave oven,television, washer and dryer, and a telephone. Food is allowed in the solarium, but we askfamily and visitors to remember that this is a shared area.Patient GuidelinesYou may find it comforting to surround yourself with personal items. Converting yourhospital room into “your own space” may alleviate some of the stress of a long stay.Pictures of family members, posters, a special bedspread or comforter, a CD or tape playerwith your favorite music, books, videos or even a pillow can often help.Pillows must contain no down or feathers; they must be new or freshly laundered. Stuffedanimals should be new. Old ones can be laundered by placing them in a pillowcase,securing the pillowcase with a rubber band, and washing on your machine’s gentle cycle.You can bring your own clothes, but be sure they are loose fitting so that the BMT teamcan easily access your long-term intravenous catheter. Please leave all jewelry at home.You should bring your own shampoo.Mail will be delivered daily, but someone else should open it for you while your white bloodcount is low. New magazines, newspapers and other unused reading material areacceptable.No fresh or dried flowers, potted plants or animals are allowed on the unit. Silk flowers (butnot with a dried-moss base) and balloons are fine.Each patient room has a speaker telephone. Long-distance telephone calls can bearranged through the operator for an extra charge. All rooms also are equipped withtelevisions and VCRs. There is a daily charge for phone and television service. Videotapescan be borrowed. You may bring a laptop computer from home, and you will be able toaccess the Internet if you have a personal AOL account. Laptop computers are availablefor short-term loan from the Community Cancer Resource Center on the first floor, in theSunflower Cafe.24

Visitor Rules and GuidelinesThe BMT unit has an open visiting policy, which means that family members or friends canvisit at any time. However, you should check with your doctor and charge nurse beforechildren visit.These following rules and guidelines are designed to create a pleasant, healthyenvironment for everyone. Please respect them.• Smoking is not allowed. Roswell Park Cancer Institute is dedicated to the overallmission of curing cancer; cigarette smoking is known to be a leading cause of cancer.Therefore, RPCI has a strict No Smoking policy throughout the transplant unit andthe entire Institute.• Hand washing with antimicrobial soap is the single most effective way to preventinfection. Before entering a patient’s room, all visitors must wash their handsthoroughly.• One parent of each pediatric patient is encouraged to stay overnight in the child’shospital room during the transplant process.• Pediatric patients are allowed, with the approval of their doctor, to visit the hospitalpediatric inpatient floor. Facilities include a playroom and game room.• Family members should make sure that the nursing station has correct telephonenumbers on file for emergency contacts.• There are no restrictions on visiting hours, but no more than two visitors are allowedin a patient’s room at one time. One family member is encouraged to stay with youduring the admission process.- Visitors should recognize that a good night’s sleep is very important to yourrecovery. Should you have a problem, family members who return to their home orhotel for the night will be notified.- Eating and drinking in patients’ rooms or on impatient units are strickly prohibited.- Children under the age of 16 must be accompanied by a responsible adult, otherthan the patient, at all times.- Children must go directly to the patient’s room, remain in the room for the durationof their visit, and leave the unit directly upon departing the patient’s room.- Children may not visit patients who are in isolation of any type.- Children may not visit if they have a contagious infection or if they have beenexposed to a contagious infection in the previous three weeks.- Babies’ diapers must not be changed within the unit.- Visitors who have a fever or infection or who have been exposed to an infection25

within the past three weeks are not allowed to visit unless cleared by an infectioncontrol practitioner or designee.- Visitors recently immunized with a live virus vaccine (such as Varicella within threeweeks) may not visit until cleared by an infection control practitioner or designee.- Patients and family members are not allowed to visit other patient rooms. Thishelps to prevent the spread of infection.• To prevent cross-contamination, family members may not use the bathroom ortelephone in the patient’s room. Restroom facilities and a telephone are located nearthe solarium.MealsMeals are provided by the Food and Nutrition Department. You will be on a low microbialdiet to reduce your exposure to bacteria and prevent infection and food-borne illness. Eachday you will receive a menu to make your selections. A dietitian reviews the menus dailyand will guide your choices as needed.Foods from home are allowed as long as:• Food is selected and prepared in accordance with the low microbial diet. Refer to thebooklet titled “Guide to the Low Microbial Diet” for specific guidelines andrecommendations.• Foods brought in are kept in a safe temperature zone during transport.• All home-cooked foods are consumed within 24 hours of arrival.• Only patients may eat or drink on impatient units.Critical CareIf you become very ill and require intensive monitoring or special care such as a ventilator,the transplant unit is equipped to take care of you. This allows you to stay on the fifth floorBMT unit or you may be transferred to the Intensive Care Unit (ICU).If a pediatric patient becomes very ill and requires intensive monitoring or special caresuch as a ventilator, the child may need to be transported to the intensive care unit atnearby Women’s and Children’s Hospital of Buffalo. Transportation will be arranged by aspecially trained pediatric transport team.Your Transplant and RecoveryThe day you are admitted to the BMT/Hematologic Oncology Unit may be very busy andcould produce anxiety. Hang in there! When you arrive at the hospital, report to theRegistration Area; then go to the BMT unit.26

When you arrive on the unit, the staff will meet you and take you to your room. Youradmitting nurse will do a nursing assessment. A nurse practitioner, physician assistant ordoctor will do a physical assessment. You will have a number of blood tests and if anyother tests or procedures are needed, they will be done at this time. Remember, thenursing staff is always willing to answer questions or find answers for you.If you have not yet done so, you will be asked to sign a consent form before yourconditioning regimen of chemotherapy and/or radiation begins.The conditioning regimen will vary depending on your disease, status andprior treatment. It may consist of chemotherapy alone or in combination withtotal body irradiation.ChemotherapyThe chemotherapy you will receive has been carefully planned as part of a “protocol.” Aprotocol is a precisely timed and organized approach to the treatment of your diseaseoutlining the medications you need. Your protocol was written by a physician and expert inthe field of cancer (and blood and marrow transplantation).Chemotherapy is an important part of your protocol. It will consist of one or moremedications, depending on your disease, stage, previous treatment, age, health, etc. Yourchemotherapy will be given on a special schedule that is thought to be best for killing yourcancer and yet reducing, as much as possible, the harm to your body’s normal cells. Youwill be told what days you will receive chemotherapy and how you should expect to feel.Chemotherapy drugs will be given orally or intravenously.The doses of chemotherapy used in a transplant are much higher than those you mayhave received before. To rid your body of cancer cells, it is necessary to use the highestdoses possible. You may experience more severe and different side effects than you havein the past.Chemotherapy usually kills other cells in addition to cancer cells; this is why people onchemotherapy often have side effects. It can damage normal, fast-growing cells such asthose in your mouth, throat, bowels, skin, hair and bone marrow. You may experiencemouth or throat sores, nausea and vomiting, diarrhea, a rash, change in skin color and aloss of hair. Your blood counts may become very low.You will receive medications to minimize nausea and vomiting. Pain medications will begiven if you develop pain or sores in your mouth and/or throat. An oral hygiene programwill begin once you are admitted to the hospital. Medications also will be given if youdevelop diarrhea or constipation.You will lose your hair during treatment, but this is usually temporary and your hair shouldgrow back within three to six months. Because body heat is lost through the head, you mayfeel colder after the loss of your hair. You are encouraged to wear a cap, scarf, wig or turban.27

Chemotherapy may affect other organs of your body as well, such as your kidneys, liver,heart or lungs. Although severe side effects are infrequent, they can progress and causecomplications such as veno-occlusive liver disease, kidney failure, heart palpitations orstiffening of the lungs. We cannot predict who will experience these side effects. You willbe given information on these potential side effects, as well as explanations of eachchemotherapeutic medication and its potential side effects.RadiationRadiation therapy (also called irradiation) is part of some transplant conditioning regimens.The type of radiation you may receive is called total body irradiation (TBI) because it isgiven to your entire body. During treatment, a machine sends rays of high energy into yourbody. The cells in your body are prevented from growing and multiplying when they areexposed to these high-energy rays.What to Expect. First, you will meet with the radiation oncologist, who will review theprocedure and ask you to sign a separate informed consent form. TBI treatments areusually given once or twice a day – once in the morning and once in the afternoon. Thenumber of treatments depends upon your protocol.Before going for TBI, you may be given medication to prevent nausea. The treatmentusually takes one hour. You will not feel anything while receiving the treatment. During thistime, you will be asked to remain in a seated position. You will be alone in the treatmentroom, but you will be monitored on two TV screens by the technician. One screen will befocused on you and the other will be focused on a machine that monitors your bloodpressure and pulse. If you are having any problems, you can signal your technologist, whowill do everything possible to make you comfortable.Like chemotherapy, radiation affects both cancer cells and normal cells. The side effectsthat may occur are due to the effects on normal cells. Initially you may experience nausea,vomiting and diarrhea. You will be given medications to prevent and treat these sideeffects.After you complete the treatments, you may develop some other side effects. These mayinclude: red, dry skin (which may begin to look like a suntan), dry mouth (which occursfrom the effects of the radiation on your salivary glands), parotitis (swelling of the parotidglands in front of your ears), infertility, lung changes or cataracts. Your doctors and nurseswatch very closely for any of these side effects. Some are easily treated, while others mayrequire long-term follow-up. If you have any questions regarding your treatment, pleaseask any member of the transplant team or your radiation therapist.Stem Cell InfusionThe important day that you receive the stem cells from your donor is called Day 0. Twentyfourhours before your stem cell infusion, you will begin receiving a continuous infusion of amedication that will suppress your immune system to prevent rejection of your donor’sstem cells.28

On Day 0, your donor’s stem cells will be brought to your room in a special blood productbag and administered through your central IV catheter by your nurse or doctor. The cellsare usually given by IV drip or sometimes by IV push through a syringe.You will be hooked up to a monitor, and your vital signs, blood pressure, heart rate,respirations, temperature and oxygen saturation will be recorded every 15 minutesthroughout the infusion, then every 30 minutes for one to two hours afterwards. Emergencydrugs and oxygen will be available in the room. These precautionary measures arestandard for all BMT patients. Your nurse will be observing you very closely for any sideeffects.EngraftmentEngraftment is the process by which the donor’s stem cells migrate from your bloodstreamto the cavities of your long bones and begin producing normal blood cells. This processtakes two to three weeks; during this time, you will have low blood counts and you will besusceptible to infection and bleeding. You will receive transfusions of blood products andantibiotics. Special precautions will be taken to prevent infection. You will receivemedications to lower the likelihood of developing graft versus host disease (GVHD).Engraftment will have occurred when your white blood count begins to rise. At this time,you will gradually be taken off antibiotics, and your need for blood and platelet transfusionswill decline.Your blood type will change to your donor's blood type.You will be given a bracelet noting that your blood type may have changed and that youshouldreceive IRRADIATED blood products only. This is to prevent transfusion associatedGvHD.(See GvHD section)Blood Cell Levels and TransfusionsThe three main types of blood cells are red blood cells, white blood cells and platelets.Each has a specific job to do, and the level of each type may be affected by thechemotherapy and/or radiation you receive before your BMT. To ensure adequate levels ofeach type, your blood will be monitored regularly, and transfusions will be given asnecessary.Red Blood Cells (Erythrocytes or RBCs)RBCs, which give blood its red color, carry an iron-rich protein known as hemoglobin,which picks up oxygen from your lungs and carries it to all the cells in your body. Whenyour hemoglobin level is low (anemia), you may feel weak or dizzy, lack energy, be short ofbreath, have headaches and/or become irritable. If you become anemic, your doctor willorder a red blood cell transfusion; you will receive one or more bags of packed red bloodcells as needed to keep your hemoglobin level above eight. Each bag will be transfusedover two to three hours. This blood will have been typed and cross-matched with yourblood to confirm that you and the donor have the same blood type, thus minimizing the29

chance of a reaction. However, if you do have a transfusion reaction, the symptomsmight include chills, hives, itching and/or breathing problems. If you have any of thesesymptoms, please notify your nurse immediately. Because RBCs have a longer lifespanthan platelets, you usually will not need RBC transfusions as often as platelet transfusions.Platelets (Thrombocytes)Platelets are the smallest components in blood; they play a crucial role in causing blood toclot and preventing excessive bleeding. Without enough platelets (a condition calledthrombocytopenia), spontaneous bleeding and unexplained or excessive bruising mayoccur. Normal platelet values are between 150,000 and 300,000 per microliter of blood. Tohelp prevent bleeding, you may be given transfusions of platelets, generally if your count isless than 10,000 to 20,000. Platelets may be transfused more frequently if there is activebleeding or before any invasive procedures. Transfusions may be given as often as onceevery 12 hours or as infrequently as every three to four days until your bone marrowbegins to produce its own.White Blood Cells (Leukocytes, WBCs)WBCs defend your body against disease-producing bacteria, viruses, parasites, fungi,foreign substances and tumor cells. There are three main types:• Monocytes defend the body against bacterial and fungal infections.• Neutrophils (granulocytes) are the body’s first line of defense against infection. Thebone marrow can quickly speed up production of these cells whenever they areneeded. They combat infection by rapidly mobilizing into the bloodstream where theyrespond to the presence of bacteria or foreign substances. When the infection iscontrolled, their production returns to normal.• Lymphocytes patrol the bloodstream, the lymphatic system and the lymphoid organs(spleen, thymus, thyroid, lymph glands) looking for disease-producing foreignsubstances and tumor cells. There are two main types: B cells and T cells. Thesecells are involved in defense against bacterial, fungal and viral infections.A normal total WBC count ranges between 5,000 and 10,000 cells per microliter of blood.Another numerical term you may hear is 5 to 10, which is an abbreviated way of saying5,000 to 10,000. Neutrophils account for approximately 50 percent to 80 percent of thetotal number of WBCs. You have neutropenia when your neutrophil count is low. Your riskof infection increases if your count is 1,000; the risk increases dramatically if your count isbelow 500. Your WBC and absolute neutrophil count (ANC) will be monitored daily.Generally, as the overall number of WBCs increases, so too does the number of circulatingneutrophils.30

Safety of TransfusionsAll blood products are carefully tested for all types of hepatitis, HIV and syphilis, accordingto federal requirements. Cytomegalovirus testing will be done if your doctor decides it isneeded. All blood products are irradiated and filtered to help eliminate the chance ofreactions from white blood cells.When Your Blood Counts Are LowYour blood counts will drop after chemotherapy and/or radiation. This is to be expected.Your blood counts will start to rise about one to two weeks after your conditioning regimenis completed. However, every patient is unique, and blood counts may take longer torecover in some patients. If you have any questions or concerns about your blood countrecovery, you should discuss them with your doctor.White Blood Cells: InfectionAfter you receive your conditioning therapy, your white blood count will decrease andremain low until your new cells begin to grow. During this period of engraftment, you are atrisk of developing infections because you do not have white cells to fight these bacteria,viruses or fungi.Bacterial InfectionsBacteria are microscopic organisms that invade tissues and multiply rapidly. Theycan cause infections anywhere in the body.Bacterial infections are most common during the first two to four weeks following atransplant. The chemotherapy and/or radiation administered before transplantimpairs your ability to fight bacterial infections in three ways:- The skin and mucous membrane barriers that normally prevent bacteriafrom entering the body are damaged.- Neutrophils that are responsible for fighting bacteria are destroyed.- Antibodies that once made you immune to certain bacterial infections aredepleted.Post-transplant infections occur most often in the intestines, the skin (especiallyaround central IV catheters), and in the mouth. They also can occur in thebladder or in the lungs, causing pneumonia.Fungal InfectionsFungi are primitive life forms we encounter every day. Bread mold is a commonfungus. Most are harmless, and some, such as Candida, normally reside in ourbodies. Fungal infections are very difficult to detect and treat. Candida andAspergillus infections are the most common fungal infections after transplant.Candida fungi live in the intestines, mouth and vagina; normally, they are kept incheck by bacteria. When antibiotics destroy bacteria, fungi can multiply and spread,infecting many parts of the body. Aspergillus infections occur most often in the sinuspassages or in the lungs and can cause pneumonia.31

Viral InfectionsViruses are tiny parasites that must invade other organisms, such as human cells, tosurvive and multiply. Viruses eventually destroy or cripple the host cell and move onto neighboring cells to continue reproduction and destruction.Viral infections are difficult to treat, but anti-viral agents are available.Viral infections after a transplant can occur either as a result of exposure to a newvirus or reactivation of an old virus dormant in your body. Viral infections are mostcommon during the first 12 months following a BMT, but may occur as late as twoyears after transplant. The most common ones are caused by herpes simplex virus(cold sores, shingles), cytomegalovirus and varicella zoster virus (chicken pox).To help avoid infection while your WBC count is low – below 1,000 – you will need to dothe following:• Bathe or shower daily.• Perform good mouth care using a Toothette® oral swab and follow your oral careinstructions.• Follow a low-bacteria diet, a copy of which will be provided to you.• Avoid contact with people who have a cold, flu, chicken pox and other contagiousdiseases (you may need to limit visitors who are not feeling well).• Eliminate plants, fresh flowers and fresh fruit from your room.• Take all medications.• Wash your hands well before mouth care, eating and after using the bathroom.If you develop an infection during this time period, you will be placed on antibioticsimmediately. It is important to tell your nurse or doctor how you are feeling. Some of thesymptoms of an infection are:• fever• skin tenderness• chills/sweating• a burning feeling when urinating• rectal pain/tenderness• a cough, sore throat or mouth pain• loose stools/diarrheaPlatelets: BleedingBecause platelets are made in the bone marrow, your platelet count will begin to rise asthe marrow grows back. It usually takes platelets a few weeks longer to grow back than theWBCs and RBCs.32

Common symptoms of a low platelet count are:• nose bleeds• bleeding around the teeth and gums• blood in the urine or stool (which may not be seen by the eye)• small bruises on the bodyIt is important for you to tell your doctor or nurse if you notice anything different or anybleeding. During this time, there are things you can do to prevent bleeding:• Take good care of your skin and lips; dryness may lead to bleeding.• Use only an electric razor.• Wear shoes or slippers at all times when you are out of bed.• Avoid blowing your nose vigorously and picking your nose.• Avoid deep coughing or sneezing.• Avoid straining during bowel movements and vomiting.• Exercise by walking; avoid rough activity or exercises that may cause you to bumpyour head or injure other parts of your body.• Report headaches and lightheadedness to your nurse.• Take special care with hot foods or sharp utensils so you don’t injure your mouth; donot use toothpicks, toothbrushes or dental floss.• Avoid clipping your finger and toe nails without the permission of your nurse or doctor.• Please remember to save all your urine and stool in designated containers.Red Blood Cells: FatigueWhen your red blood cell counts drop, you may require red blood cell transfusions to treatyour anemia. Symptoms of anemia include:• shortness of breath• pale color• weakness• fatigue• irritability• feeling cold• dizzinessIf these symptoms occur, notify your doctor or nurse.There are several things you can do to help yourself feel better while you are anemic:• Conserve your energy and take frequent naps between activities.• Move slowly and change positions slowly to avoid dizziness.33

Side EffectsHigh-dose chemotherapy and total body irradiation are harmful not only to diseased cells,but also to normal tissues and organs. When normal cells are affected, side effectsdevelop. Side effects such as difficulty eating, mouth sores, nausea and/or vomiting,diarrhea, hair loss and skin changes almost always occur to some degree, regardless ofwhich conditioning regimen you receive.Difficulty EatingThere are many reasons you might have difficulty eating during and after your transplant.Chemotherapy and/or radiation can cause nausea and/or vomiting, mouth or throat soresand diarrhea. In addition, your saliva may thicken and make chewing and swallowing fooddifficult. Rinsing your mouth often and drinking fluids will help.Mouth dryness may last for several months after your transplant. Taste changes, either theinability to taste foods or a change in normal taste, may last for 30 to 60 days or longerafter chemotherapy and/or radiation. The ability to taste sweets often returns first.Mouth Sores (Mucositis)Good oral hygiene will be important to you before, during and after your transplant. If yourmouth is not kept clean, an infection can occur and quickly spread to other parts of yourbody. Mouth sores and infection can be painful. You can significantly reduce your risk ofdeveloping mouth sores and infection by following your prescribed mouth care program. Ifyou do develop mouth sores, the frequency of mouth care will increase. You will be givenpain medication to reduce your discomfort. As your white blood cell count increases, yourmouth also will improve.Nausea and/or VomitingNausea and/or vomiting are common following all conditioning regimens, but can usuallybe controlled with medications. Medications and infections also can cause nausea and/orvomiting. Drugs called antiemetics are used to treat nausea. (Emesis means vomiting;thus, antiemetics are drugs to prevent vomiting.)If you feel nauseous or like you might vomit, tell your nurse or doctor. The dose andfrequency of the anti-nausea medications may have to be adjusted. Anti-nauseamedications will be given to you through your long-term IV catheter. Please ask your nursefor these medications when you feel you need them. Do not wait for vomiting to start.DiarrheaDiarrhea following your conditioning regimen is common. Another cause of diarrhea is thepresence of an infection. If infection is suspected, you may be started on an oral antibiotic.Anti-diarrhea drugs may be prescribed to sedate the nerves in your gastrointestinal area,slowing down muscle contraction and diarrhea. Please tell your nurse if you have aproblem. Carefully cleaning the rectal area is important to prevent infections. If your rectalarea becomes irritated, creams will be prescribed to relieve your discomfort and reduce therisk of any skin breakdown.34

Hair Loss (Alopecia)Temporary hair loss always occurs following the conditioning regimen. Some patientsprefer to shave their heads or cut their hair very short before hair loss begins. Hair losschanges your appearance and can be very distressing. Scarves, caps, hats or wigs can beworn until your hair grows back. Wigs and other headgear are available for free at RPCI’sCommunity Cancer Resource Center (CCRC). You may wish to consider stopping by theCCRC before you lose your hair – a cancer information specialist can help you choose awig similar to your hair color and style, or you might prefer a totally new look! Hair normallygrows back within three to six months following the transplant. You may notice changes inthe thickness, texture or curl of your hair.Skin ChangesDepending on the chemotherapy and/or radiation prescribed, your skin may peel, becomereddened or change shade. This is temporary, and you will receive creams to alleviatediscomfort. The nurse will give you further instructions about your specific skin care. Lessoften, hyperpigmentation (dark spots on the skin) occurs. This usually fades over a periodof one to two months.ComplicationsA BMT is a potentially life-saving procedure, but with it comes the possibility ofcomplications, some very serious and even life threatening. These complications can comequickly or later on and may persist for lengthy periods. Please do not delay in reportingsymptoms to any member of the transplant team so we can treat you as soon as possible.Graft Versus Host Disease (GVHD)Except in the case of identical twins, there is some degree of incompatibility among alldonors and recipients, even if they have six matching HLA antigens, so GVHD is acommon complication following allogeneic BMT. The disease can range from mild to lifethreatening,with short-term or long-term symptoms.GVHD occurs when T-cells from the immune system of the donor recognize the proteins(antigens) on your cells as foreign. While GVHD may produce a beneficial antitumor effect,too much can cause severe problems, even death.The incidence and severity of GVHD varies, depending upon the degree and types ofdifferences between the donor and recipient:• If all six HLA antigens tested are compatible, GVHD is less likely to be severe, but notall people are able to find a donor who matches them completely. In such cases,mismatched donors (five, four, or sometimes only three matching HLA antigens) mustbe used, raising the risk and severity of GVHD. Certain antigen mismatches causemore serious problems than others.• Greater incompatibility issues arise with older people, both as donors and asrecipients.35

• Because the donor’s T-cells recognize the recipient as foreign, the greater the numberof donor T-cells infused, the greater the risk. In certain situations, donor BPCs maybe treated in the laboratory to remove T-cells prior to the transplant.• Newer drugs available today are doing a better job of preventing and treating GVHD.These factors can affect the success of a transplant, but to a lesser degree:• If the donor and recipient are the same gender (Males have X and Y chromosomes,females have X and X).• If the donor is female, how many times she has been pregnant.• If the recipient’s conditioning regimen includes TBI.Incidence of GVHD is highest among older patients and those transplanted from anunrelated donor or a mismatched donor.GVHD can be acute or chronic. Patients may experience none, one or both types. AcuteGVHD occurs within the first 100 days or so following allogeneic BMT, and chronic GVHDoccurs after the first 100 days. Day 100 should be considered merely a guideline, however.GvHD can occur from a blood transfusion due to donor white blood cells reacting againstthe recipient. Thus, all blood products (red cells; platelets and plasma) are irradiated priorto transfusion!The first sign of acute GVHD is usually a mild skin rash. This may change into a sunburnlikeredness. In more serious cases, skin may blister or peel. Acute GVHD can also affectthe gastrointestinal tract and liver. Some combination of nausea, cramping, bloody orwatery diarrhea and jaundice, a yellowing of the skin and eyes, may result.Patients who have had acute GVHD are at greatest risk for developing chronic GVHD.However, a patient who has not had acute GVHD can still have chronic GVHD, whichdevelops three or more months after a BMT. Skin problems, including rashes, itching,changes in skin color, lesions and tautness are typical.Other common symptoms are liver abnormalities and infections. Chronic GVHD can attackglands, leading to dry or burning eyes, dry or burning mouth and mouth sores. Good oralhygiene is crucial to minimize infections.Gastrointestinal irritations can make it difficult to properly absorb nutrients and lead todifficulty swallowing, heartburn, stomach pain and weight loss. At times, chronic GVHDcauses skin scarring, premature graying of hair, hair loss, vision problems, liver injury and,occasionally, a tightening of the tendons in joints that can make arm and leg movementdifficult.Symptoms can range from mild to serious. They may occur alone or together. In severecases, permanent disability or death may occur, although this does not happen frequently.The body’s immune system is weakened from chronic GVHD and immunosuppressivedrugs. Because chronic GVHD also weakens barriers to infection such as skin and mucousmembranes, infection is the leading cause of death from chronic GVHD.36

Prior to your BMT, you will receive drugs to prevent infection and GVHD. It is imperativethat you practice good hygiene throughout the transplant process.The most common agents used to prevent GVHD are cyclosporine (CsA), tacrolimus (FK-506/Prograf), Methotrexate and steroids. Some form of prevention is always started beforeallogeneic BMT. It is critical that you take your anti-GVHD medications and not stop takingthem without notifying your doctor, nurse practitioner or physician assistant.Coping with GVHD can be very challenging for patients and their families. You may beangry that you must deal with this illness on top of everything else. Drugs you are takingmay exaggerate mood swings, depression and anxiety. Please try to keep in mind thatGVHD’s manifestations are temporary. The members of the transplant team are here tohelp you cope.For some patients, symptoms such as skin sensitivity, eye irritation and gastrointestinal andliver problems do persist long term. Fortunately, most patients recover without significantlong-term side effects. Researchers, including those at RPCI, continue to investigate waysto reduce the complications of this difficult disease.Allogeneic BMT is associated with Graft versus Malignancy effect. The donor cells can helperadicate the recipient’s underlying cancer. This GvM (Graft v. Malignancy) effect can occurwith or without the presence of GvHD. Patients with higher risk disease are offeredallogeniec BMT.Veno-occlusive Disease (VOD)Your liver is a complex organ that performs many essential functions not duplicated by otherorgans in your body. If the blood vessels that transport blood through your liver becomeobstructed (blocked) or if your liver is damaged, it cannot properly rid your body of toxins,drugs and other waste products. If the flow of bile from your liver becomes obstructed,excess levels of bilirubin, cholesterol and other chemicals will build up in your body,interfering with the function of the liver and other organs.Veno-occlusive disease (VOD) is a potentially serious liver problem caused by the highdoses of chemotherapy and/or radiation you receive before your BMT. In patients with VOD,the blood vessels that carry blood through the liver become swollen and obstructed. Thisimpairs the ability of the liver to remove waste products from the bloodstream. Pressure andfluid build up in the liver, causing liver swelling and tenderness. The kidneys may retainexcess water and salt, causing fluid to build up in the body. Swelling of the legs, arms andabdomen may occur.In severe cases of VOD, fluid builds up and leaks into the abdominal cavity and may putpressure on the lungs and impair breathing. Toxins that the liver does not remove from thebody may affect how the brain functions. Confusion may result. Symptoms of VOD –jaundice, an enlarged liver, pain or tenderness in the area of the liver, rapid weight gain,swelling and accumulation of fluid in the abdomen – are usually seen one to four weeksafter the start of chemotherapy and/or radiation. VOD can be difficult to diagnose becauseits symptoms are also symptoms of other liver disorders.37

When VOD is suspected, the medical team will attempt to prevent the more seriouscomplications by:• minimizing or eliminating certain drugs• prescribing diuretics to increase urine output and relieve fluid buildup in tissues• dialysis• carefully monitoring the volume of fluids in the body• giving transfusions of packed red blood cells to keep the circulating blood volume highuntil VOD runs its courseMedications such as Heparin, Enoxaparin and Alteplase may be used to prevent and treatVOD.Lung and Heart ComplicationsIt is possible that high doses of chemotherapy, radiation, fluids or infections can affect yourheart and lungs, decreasing their ability to function. For this reason, you will have testsbefore, during and after your transplant to monitor the condition of these organs.You can play an important and active role in preventing lung complications. If you smoke,you must stop smoking. Smoking is not permitted while you are in the hospital, andresuming smoking after your transplant increases your risk of serious lung complications.Secondary smoke must be avoided. Assistance and information is available to help youstop smoking.While you are hospitalized, your health care providers will teach you activities to help youmaintain healthy lung function. Your doctors and nurses will evaluate your lungs every day.If ordered by your physician, a respiratory therapist may provide treatment.Kidney and Bladder ComplicationsBy producing urine, your kidneys help maintain the proper amount and characteristics ofbody fluids. They also process some drugs and remove other waste products from yourbody. Because of the intensity of the BMT process, it is not unusual to develop kidneyproblems. Although mild kidney problems are common, they are taken seriously andtreated aggressively.Many of the chemotherapy drugs and medications you will receive may be harmful to yourkidneys and/or bladder. This is why your kidney function is closely monitored throughouttreatment. Your weight will be taken every morning, blood samples will be taken frequentlyfrom your long-term IV catheter; intravenous and oral fluids will be measured carefully andrecorded, and all urine, stool and emesis will be measured and recorded. This is called I &O (intake and output).Some drugs affect the nerves in the bladder and may prevent you from completelyemptying your bladder. Sometimes the volume of fluid that you receive intravenously toflush out the chemotherapy drugs is so large, that you will retain fluid. If this occurs, youmay be given a diuretic to increase your urine output. If urine retention remains a problem,a Foley catheter (a small, soft tube) may be inserted through the urethra into the bladder,38

allowing the urine to flow freely into a collection bag. Urine retention usually subsides in afew days to weeks.Occasionally, despite close monitoring and aggressive therapy, kidney failure that does notrespond to medications such as diuretics may occur. In these cases, dialysis may berequired to help the kidneys heal and to remove toxins that build up in the body.Dental ComplicationsConditioning regimens that include radiation can cause complications of the mouth andoral mucosa. Dry mucosal membranes can lead to decreased saliva production, poor oralhygiene and dental cavities. Careful oral hygiene is important, and must be continued afterdischarge. Brush your teeth at least three times a day with a soft toothbrush, floss and visityour dentist regularly post-transplant.Pain, burning, irritation and loss of taste are common complaints. Inadequate nutrition cancause weight loss, oral infections and dental cavities. Try a soft, bland diet and liquidnutritional supplements if necessary. Use artificial saliva and sugarless hard candy, gumand mints to help with changes in taste and saliva production.CataractsRadiation and steroid therapy may cause cataracts. Good medical follow-up is needed andsurgical intervention might be required if cataracts form. It’s important to report any visualdisturbances to your eye doctor.Thyroid ChangesThyroid problems may result if radiation is from your treatment. Report symptoms such aslethargy, sluggishness, depression, sleep disturbances, swelling, weight gain and sparse orthinning hair.Complications of SteroidsAvascular necrosis – the loss of blood supply to the bone, which causes bone tissue to die –is a frequent complication of using steroids to manage treatment side effects. The head ofthe femur (thigh bone) is usually affected, but the head of the humerus (arm bone) can alsobe involved. An early symptom is a dull aching or a pressure sensation within the hip thatbecomes worse by weight bearing or extremes of hip motion, so any hip or shoulder pain ordiscomfort, limited range of motion, or stiffness in the joint (contractures) should be reportedto your doctor. Surgical intervention might be needed.Steroid myopathy is a chronic, painless muscle wasting and weakness caused by steroids. Itusually begins in the pelvic girdle and may cause difficulty climbing stairs or rising from aseated position. It can also affect the shoulder girdle, making it difficult to lift objects.Eliminating or decreasing the dose of steroids is the most effective way to treat steroidmyopathy. Muscle strength usually returns over time, but in some cases, muscledegeneration prevents a full recovery.As steroids are being tapered, you might have muscle aches, mood changes, lethargy, lossof appetite and skin changes.39

Other side effects of long-term use of steroids include a Cushingoid appearance (moonface), collapsed vertebrae, osteoporosis and hypertension. The list below gives moreinformation about possible symptoms and how to deal with them:• Sun sensitivity. Avoid sun exposure; wear sunscreen with a high sun protection factor(SPF).• Steroid-induced diabetes/increased blood sugar. Avoid large amounts of concentratedsweets. This complication can be treated with a modified diet, oral medications and, attimes, insulin.• Increased appetite (obesity). Eat a well-balanced diet, exercise as permitted, andmonitor your weight.• Mood disturbances. Expect some variations in mood, but report marked changes inyour behavior.• Increased growth of body and facial hair. This is a common but temporary side effect.• Stomach ulcer. Take medications with food or milk, report stomach pain, dark stools,vomiting of blood or abdominal swelling.• Insomnia. Discuss with your nurse practitioner or BMT doctor.InfertilityInfertility can be a devastating side effect of BMT, but not all patients undergoing a BMTwill experience infertility. It is not the BMT itself, but the high-dose chemotherapy and/orradiation administered before the BMT that damages reproductive cells. Chemotherapycan damage or destroy ovarian or testicular cells from which egg and sperm evolve.Radiation causes similar problems and can also damage the uterine lining or fallopiantubes.Chemotherapy or radiation induced infertility can be temporary or permanent and canoccur at low doses or the higher doses given pre-BMT. Patients who have undergonestandard chemotherapy or radiation therapy for their disease before considering a BMTmay already be infertile.Certain chemotherapy drugs and dosages are especially toxic to reproductive cells.Younger patients are generally less likely to develop permanent infertility from standardtherapy, however, high-dose therapy and total body irradiation can produce more severetoxic effects to the reproductive organs. High-dose steroids, often used during or afterBMT, can also contribute to fertility problems.Please let us know if you have concerns about fertility.Lack of EngraftmentIn rare circumstances, the transplanted marrow or stem cells (donor cells or even therecipient’s own cells) do not repopulate the recipient’s marrow; this is called lack of40

engraftment or graft failure. When this happens, patients are predisposed to infections andother complications. They may need transfusions of blood (RBCs) and platelets forsupport. Treatment also can include erythropoetin and neupogen injections. Sometimesgraft failure is life-long, even life threatening. Again, this is a very rare complication. Yourtransplant team will discuss this with you if applicable.RelapseOccasionally, a transplant does not achieve its goal, and the patient’s disease doesn’t gointo remission or it comes back. Because everyone has hoped for a cure, it is natural thatthis outcome is devastating for the patient, his or her family and the transplant team.Should this happen, unfortunately, options for cure are limited. Some treatments can stillpotentially cure the disease, although it is more difficult with recurrent disease and muchless likely to happen.New or novel therapies or phase 1 clinical trials (studies that are evaluating promising newtreatments) may be used. Sometimes, after discussion with physicians and loved ones, apatient decides to stop aggressive therapy and receive palliative care or comfort measures.These are meant to support the patient and help optimize whatever time he or she mayhave left.Secondary MalignancySometimes, people who have had chemotherapy and/or radiation may develop a second,new type of cancer. Even though used initially to treat their cancer, these agents are knownto have long-term effects on the body.When your doctor makes the recommendation to use these treatments, it is because he orshe believes that the risk of not treating the disease is worse than the risk of possible sideeffects that may occur in the future.A secondary malignancy can occur anytime after chemotherapy and radiation, at any pointin a patient’s life. The medical team sees post-transplant patients at least once a year forlife to screen for this possible complication. Some of the most common secondarymalignancies are acute myeloid leukemia, myelodysplastic syndromes, skin or oralcancers, and other solid tumors such as lung cancer. You should talk to your health careproviders regarding your individual risk.DeathSometimes a patient’s cancer proves to be resistant to all the therapies we have to offer,and no matter how hard the patient, family and transplant team try, occasionally the BMTdoes not work, or complications may arise that are insurmountable. Death always is apossibility, no matter who we are and where we are in life.Having a potentially fatal illness, and undergoing high-dose chemotherapy and/or radiationonly point out how fragile life is. At Roswell Park Cancer Institute, we believe that patientsshould discuss their end of life wishes with their family, loved ones and medical providers41

to make sure their wishes are honored. We encourage all people to talk about their wishes,even if they are not sick. Please speak to your transplant team about a Health Care Proxy,Advanced Directive and the use of Do Not Resuscitate orders.Challenges and ResponsibilitiesEach day of your hospitalization, you will face challenges and responsibilities regardingyour care. The BMT unit staff is available to consult with you and help you with your dailyactivities.NutritionA registered dietitian is available to you during and after your hospital stay. The dietitian willperform a nutritional assessment to identify your status, make recommendations for yournutritional care and address any problems with your oral nutrition. At times, physiciansorder intravenous nutrition or nutrition through a feeding tube to prevent or correctmalnutrition. The dietitian works closely with your health care providers and makesrecommendations as needed to be sure your nutritional needs are being met.Mouth CareDuring and after your transplant, it is important to watch for any sores or infections thatmay arise and cause complications. The dental team is always available for consultationand to make recommendations to correct problems in your mouth. You should keep youroral cavity as clean as possible using a chlorhexidine rinse and a soft Toothette®, whichwill be provided to you during your stay.HygieneDaily hygiene plays an important role in your personal care. Patients are encouraged to doas much as they are able as part of a daily routine. Transplant unit staff will assist asneeded.ActivityMany patients suffer from the effects of bed rest, illness and lack of mobility. Physicalactivity is important for maintaining muscle strength and flexibility. Our team would like tohelp you develop exercise habits and participate in diversional activities. Physicaltherapists will work with you to develop a program based on your strength, endurance andinterests. This may include stretching, weights or stationary bicycling.There will be days when you will feel good and days when you will feel less like exercising.You will be encouraged to exercise even when you are not feeling up to it, and you andyour therapist will decide the activities of each day.Occupational TherapyOccupational therapists will offer activities to help you manage isolation, inactivity andboredom. Understandably, it’s very easy to get caught up in focusing only on your physical42

and emotional needs. But it is much healthier to concentrate on other activities such asreading, listening to music, drawing, solving puzzles, playing board games or just watchingvideos once in a while.Your occupational therapist also will assist you with the activities of daily living, help youincrease strength and endurance, and assess your level of fatigue. You will learn how tosimplify tasks and conserve your energy. Therapists also custom make orthotics for handsand feet, and an orthotist provides back braces.ComplianceIt’s crucial that you keep the members of your health care team informed about anyproblems that arise. Team members are available at any time to consult with you or yourcaregiver. Following through on your team’s recommendations can be crucial to your wellbeing.Please let us know if you’re having any difficulty in this area.Your DischargeOn the day you are discharged from the hospital, your nurse will review your entiredischarge instruction sheet, which includes a list of medications and schedulinginstructions. The pharmacist will help to explain the medication information. Your nurse willreview any special discharge instructions with you and your family before you leave thehospital.After your discharge, you will be cared for as an outpatient. Please keep your assignedappointments.If you live more than 30 minutes from RPCI you will be expected to stay locally untilapproximately your day 100 post transplant evaluation. This is to insure your optimal healthcare needs are monitored and addressed in a consistent and immediate timeframe.Our social work department will work closely with you to secure lodging at one of the manylocal facilities approved for post BMT living.Your Outpatient VisitsEach post-transplant patient’s care is unique. All patients will need follow-up care. Thefrequency of clinic visits depends on variables such as transfusion needs, electrolytereplacement, hydration and oral intake needs, and medication adjustment.Blood will be drawn at each clinic visit for routine testing. If any red blood cell or platelettransfusions are necessary depending on the results of your counts, you will receive thesewhile you are in clinic.At about three months, or Day 100, after your BMT, you will be re-evaluated todetermine how your disease has responded to BMT. Your status at this time will determine43

your future medical management needs. In addition, these tests may be done:• routine blood work• bone marrow aspiration and biopsy• other blood work: hormonal profile, thyroid screen• comprehensive physical exam• CAT scan, gallium scan, bone scan or skeletal survey, depending on your diseaseScheduling of ophthalmology consultations, gynecological exams, Pap smears andmammograms can be discussed with your physicians.ANNUAL BMT CLINICThe entire BMT team is committed to your continued successful recovery and well-beingafter your transplant.In order to maintain our commitment, the Transplant program has established an annualclinic to follow and assess our patients once the intensive part of your post transplant carehas been completed.Around the time of your anniversary from the original date of transplant, you will be scheduledwith an appointment in our annual Transplant clinic. This clinic is held on 5 North, where allyour pre and post transplant care appointments have occurred.You will be examined and evaluated by a multidisciplinary team including the TransplantProgram:• Clinic Nurse• Nurse Practitioner• Physician• Dentist• PharmacistIn addition, if you have specific concerns and/or questions you will have the opportunity tospeak with or be evaluated by the Transplant Program:• Physical Therapist• Dietician• Social Worker/PsychologistThe entire team will be available to offer support and assistance and answer any questionsyou may have regarding your current status and long term effects of your transplantationexperience.As a part of your visit and evaluation you will be asked to complete a Quality of Lifequestionnaire which will help the Transplant Program team assess and respond to yourconcerns and needs.44

Attending the Transplant Program annual clinic will be required once a year. It will be avaluable resource enabling you to achieve and maintain optimal health and well-beingwhich is the goal of the entire team.Resuming Daily ActivitiesYour return home is an exciting time, but it also can be a very stressful and confusing timefor you and your family. After being hospitalized for so long and going through such aphysically and emotionally taxing experience, you may find you don’t have as muchstamina or strength as you had hoped. You probably won’t be able to return to your normalfamily role right away.Your family will be affected, too. Family members may find it difficult, for example, to seetheir caregiver as the one suddenly needing help. But it’s important for everyone toremember that these changes are temporary. Patience and support at this crucial time areessential. Family members will have to step in to help with housework. You may have tolimit tasks that involve climbing stairs or strenuous activities.Life is going to be different for a while. Extra help and understanding are needed.Your family will have a lot of questions. We encourage family members to accompany youon your visits to the outpatient clinic so they can ask questions and be involved in yourcare.HousekeepingYour house should be thoroughly cleaned in preparation for your return. The furnace filtershould be replaced according to manufacturer’s instructions. (Consult with a heatingcontractor before you return home.) A small HEPA filter can be purchased for individualrooms to help maintain air quality.A humidifier is recommended to keep the relative humidity at 40 percent; this helpsmaintain healthy mucous membranes. Portable units should be cleaned weekly. Unitsattached to furnaces should be cleaned biweekly. Ask someone to do this cleaning for you.Use distilled or deionized water in free-standing/ultrasonic humidifiers to reduce thepotential of standing water bacteria.PetsAbsolutely no birds are allowed in the home until three months after your BMT. Cats anddogs should be bathed by family members or friends before you are discharged and thenoften after that. Your pet may not lie on the furniture or bedding that you use. Do not haveany contact with pet litter. Avoid all animal care. No new pets are allowed post-BMT.Plants and Flowers/GardeningPlants and flowers may remain in your house although you should not work directly withthem. Watering plants is permitted, but there should be no direct contact with the soil.Gardening is not permitted.45

Returning to Work or SchoolDiscuss this issue with your physician. You may have to temporarily decrease your timespent at work or school.Physical ActivityContinue the daily exercise program developed with your physical therapist. However,avoid rigorous exercise if your platelet count is below 50,000.As for other activities, begin with light tasks and then progress to more demanding tasks.Schedule activities to avoid several consecutive busy days. When leaving your home, goout at off-peak hours.Activities to avoid include:• swimming in lake water• using hot tubs or spas• chopping wood• cleaning the furnace• cleaning the bathroom• automotive repairDietary ModificationsFollowing your transplant, you will be on a Low Microbial Diet to reduce your exposure tobacteria and prevent infection and food-borne illness. It is necessary to follow theseguidelines if you are neutropenic (absolute neutrophil count [ANC] less than 1,000) or onimmunosuppressive therapy. Your doctor will decide when it is safe for you to return to aregular diet.Refer to the booklet titled “Guide to the Low Microbial Diet” for specific guidelines andrecommendations. Our dietitians are happy to review your diet and answer questions atany time.Please ask to speak with a dietitian if you experience any of the following:• weight loss• persistent poor appetite• persistent gastrointestinal distress such as nausea, vomiting, diarrhea, constipation• difficulty chewing or swallowing• pain that is interfering with your ability to eatIt could take several months before your normal healthy appetite revives. To maintain goodnutrition, eat small meals and snack in between. Drink plenty of water. Please discard allleftovers after 24 hours. Immediately freeze any food prepared in advance. Thaw it whenyou are ready to eat.46

Sexual ActivityYou should avoid sexual intercourse until your platelet count is above 20,000. Sexualdesire may decrease due to the stress and demands of recovering from your BMT. Talkwith your partner and allow yourself time for rest and relaxation before sexual activity.For women, lubrication in vaginal mucosa may be decreased. Water-soluble vaginallubricants will help. Vaseline-based or petroleum jellies are not advised.You should use effective birth control for the time being because the effects of chemotherapyand/or radiation on a fetus are unknown. This can be discussed further with your physician.When using condoms, choose latex condoms that contain nonoxynol-9 spermicide.It is important to know that toxic effects of chemotherapy and/or radiation may producegonadal dysfunction and infertility. Please talk to your doctor or nurse practitioner aboutany concerns.Preventing InfectionsIn order to help you prevent infections, a number of activities are not permitted. Talk to yourprovider about specific guidelines you should follow regarding these general precautions:• Avoid crowds and people with infections.• Avoid handshaking.• Question those you come in contact with about recent immunizations or contagiousdiseases. Avoid people recently vaccinated with live viruses.• Wear an appropriate facemask when in crowds, as prescribed by your practitioner.• Avoid people who recently have been exposed to or have had chicken pox.• Check with your nurse practitioner or doctor before getting any vaccinations.• Check with your nurse practitioner or doctor prior to any immediate family membersreceiving vaccines.• Don’t change baby diapers.• Wash your hands frequently, especially before handling food.• Don’t use bar soap.• Minimize exposure to animals, particularly barnyard animals.• Don’t change cat boxes or handle animal feces.• Avoid construction sites and home remodeling.• At the first sign of fever or infection, call your doctor. Don’t wait.• Do not visit hospitalized patients.HygieneHand washing is the single most important practice to prevent infection! Make sure youwash your hands often, especially after using the bathroom, coughing or sneezing. Haveinstant hand sanitizers such as Purell® available.47

Here are important tips for practicing good hygiene:• Mouth Care. During your daily oral care, you should examine your lips, mucousmembranes, teeth, gums and tongue for bleeding, inflammation or sores. Use aToothette ® ‚ oral swab for oral care until your platelet count is above 50,000, then use asoft toothbrush, a fluoride toothpaste and chlorhexidine rinse. If you develop oralthrush (a yeast infection), you will be given prescriptions for Nystatin‚ rinse or Mycelex‚lozenges, whichever is more tolerable.Saliva production may be reduced after BMT. Sugarless hard candy may stimulatesaliva production; artificial replacement products also are available. It is important tonote that you may be extremely susceptible to dental decay after BMT andchemotherapy. Good oral hygiene is key to maintaining your teeth and preventingdecay.As a precaution, consult with your BMT doctor or nurse practitioner before any dentalwork is performed. You may require antibiotics to prevent infections, especially at thecatheter site. Members of RPCI’s dental team are very familiar with treating patientsbefore and after BMT. They are available to care for you at any time, now or well afteryour transplant is finished.• Skin Care. Your skin may be extremely dry and sensitive from chemotherapy and/orradiation and from other post-BMT complications.Use a mild soap for daily hygiene, such as Ivory ® or Dove ® .Use a lubricating product daily to add moisture, such as Eucerin ® , Nivea ® or Keri ® .Use mild laundry detergents such as Ivory Snow ® or Dreft ® . Do not use Tide ® ordetergents with added perfumes, dyes. Hypoallergenic products are acceptable.Avoid direct exposure to the sun. Wear protective clothing when out in the sun, andliberally apply sunscreen of SPF 30 or more to unprotected areas.• Hair Care. Your hair will be baby fine and your scalp will be sensitive. Use a gentle,pH-balanced shampoo. Your scalp might be dry, but avoid medicated or dandruffshampoos.• Nail Care. You may notice changes in the appearance and texture of your nails. Usethe proper equipment for nail care. Do not tear off nails. Use extra caution whentrimming nails to avoid cutting the skin.• Face Care. Hypoallergenic make-up may be used in moderation. Men should shavewith an electric razor.• Foot Care. Always wear protective foot coverings to prevent injury. Shoes should fitwell and be comfortable to prevent blisters. If your feet are swollen, cut slippers opento accommodate the swelling while protecting your feet.• Ear Care. The external ear may be extremely dry and itchy. Use a lubricating,48

moisturizing product. Do not insert objects such as Q-tips® into your ears. Notify yourdoctor if you develop ear pain or discharge.• Nose and Throat Care. Do not use over-the-counter nasal sprays. Mucousmembranes may be dry and uncomfortable. A home humidifier might alleviate thissomewhat. Discuss this with the BMT staff.• Rectal Care. Do not use rectal suppositories. Avoid rectal ointments or hemorrhoidpreparations until you talk with your doctor.Even with good personal hygiene, you might have occasional itching, burning,swelling or discomfort. After a bowel movement, gentle washing with a mild soap andwater is helpful. It is particularly important for females to wipe from front to back. Sitzbaths are a good way to relieve symptoms of hemorrhoids and promote goodhygiene.• Lung Care. Do not smoke cigarettes, cigars, pipes or other substances that mightirritate your lungs. Avoid people who are smoking and smoke-filled rooms. Avoidfresh paint or other lung irritants. If you develop a cough or shortness of breath, callyour doctor or nurse practitioner.• Central Intravenous Catheter Care. Prior to discharge, your nurse will reviewdressing changes and flushing procedures. We will do our best to help you and yourfamily members learn how to do these tasks at home. The visiting nurse from yourhome care agency also will review these procedures with you until you and yourfamily members feel comfortable enough to handle them.ChildrenIf there are small children at home, request that their day care center or school notify youwhen there are any communicable diseases. Notify your doctor when children or familymembers are planning immunizations. Please, don’t change any diapers.ReimmunizationsIt may be necessary at some point for patients to be reimmunized against certaindiseases. Discuss this with your physician.DrivingImmediately following your discharge, driving is to be avoided due to the effect of suchfactors as medications, fatigue and weakness. It’s best to have others drive until yourphysician advises you differently.Travel and Dining OutYou should not travel prior to discussions with your doctor or nurse practitioner. Consultwith your doctor about air travel. Dining out is acceptable if the establishment is clean andyou go at off-peak hours.First-AidHere is a list of some common first aid remedies:• MedicAlert ® . You should wear a MedicAlert ® band at all times. Have it engraved49

Blood or Marrow Transplant, Use Irradiated Blood Products Only. Applications areavailable in the BMT unit.• Over-the-Counter Medications. Do not take over-the-counter medications unlesspermitted by your doctor or nurse practitioner. Robitussin ® , Sudafed ® and Tylenol ® areallowed, but check with the BMT unit before using them.• Headache. You should report headaches to your doctor or nurse practitioner.• Upset Stomach. Call your doctor if you have difficulty keeping down food ormedications. If you have heartburn, indigestion or sour stomach, you can use: DiGel ® ,Maalox ® , Mylanta ® , Riopan ® , Rolaids ® or Tums ® . Alternagel ® , Amphogel ® , Basogel ® andPhosphagel ® are effective, but may cause constipation.• Diarrhea. Please notify the BMT team before you take over-the-counter medicationsfor loose, watery stools.• Constipation. Adequate fluid intake and regular exercise will help you avoidconstipation (hard, dry stools or no bowel movement for two to three days). Milk ofMagnesia ® may be used. Do not use suppositories.• Minor Cuts. Apply direct pressure until bleeding stops. Clean with soap and water,and then apply hydrogen peroxide. You also may apply an antibiotic cream such asNeosporin ® . Examine the site daily and call your doctor if the wound becomes morepainful, red, weepy or swollen, or if you develop a fever higher than 100.5˚F.• Bruises. Bruising for no apparent reason can indicate a low platelet count. If you areinjured and notice swelling, apply ice and notify your doctor.• Insect Bites. Apply a liquid or stick insect repellent. Do not use aerosol sprays. Theymight irritate your lungs.If bitten, keep the area clean and dry. Calamine® lotion may decrease itching.Solarcaine®, Americaine® and topical anesthetics that end with “caine” are notadvised for pain relief because they can interfere with monitoring your skin and causeirritation.When to Notify Your DoctorIt is EXTREMELY important to contact your Transplant physician or the Bone Marrow clinicIMMEDIATELY when you experience:1) an elevation in your temperature of 100.5 degrees Farenheit or greater2) lethargy3) nausea and/or vomiting4) difficulty with breathing/ shortness of breath5) diarrhea6) falls50

This is due to the fact that you can become extremely ill in a short amount of time from theonset of symptoms.If you live more than 30 minutes from Roswell Park Cancer Institute, please call yourTransplant physician however you should be evaluated at a facility within your immediatesurrounding area. Your Transplant physician will call ahead to speak with the medicalprovider, whether that is your local oncologist or the physician at an urgent care center oremergency room. Together they will implement a plan of immediate evaluation andtreatment. Before you leave the hospital, you will receive a letter that you should keep witha packed bag in your car. In this bag also include the current list of your medications.Please let us know when you experience:• fever of 100.5˚F or higher• new or persistent cough• shortness of breath• redness or tenderness around the central IV catheter site• exposure to communicable diseases (chicken pox, measles, shingles, etc.)• any type of bleeding• inability to take medications• pain• mouth sores or sore throat• nausea and/or vomiting• weight loss or loss of appetite• changes in skin (increased dryness, redness, easy bruising or a new rash)• changes in color or consistency of bowel movements (increased volume or frequency)• decreased energy level51

Often, family members, friends and neighbors ask us how they can help. One way isto consider becoming a platelet donor at RPCI. If someone you know is interested insharing the “gift of life” with our patients, please give them the following information,or have them contact the Plateletpheresis Center at RPCI.The special blood collection process by which platelets are separated from wholeblood so they may be donated for transfusion is called plateletpheresis. A donation ofplatelets can help patients recover from a BMT. Platelets, the smallest cell elementsin the bloodstream, help stop bleeding. Certain cancer treatments, such aschemotherapy or a BMT, stop the production of platelets and lower the patient’splatelet count. If platelets are not replaced, the patient is at risk of severe bleeding.Since platelet therapy may be required for a long period of time, platelet donationscan help Roswell Park Cancer Institute maintain its platelet bank for patients.A person is eligible to donate platelets if he or she:• is in good health• is at least 17 years of age• weighs at least 110 pounds• last donated whole blood at least eight weeks prior to a platelet donation• has not taken aspirin or aspirin by-products within three days (72 hours) prior tohis/her donation appointment (Tylenol® or ibuprofen are acceptable).A person is not eligible to donate platelets if he or she:• has a history of cancer, hepatitis, diabetes, heart disease, liver disease, jaundice(except as a newborn), AIDS or any other blood and/or sexually transmitteddiseases• falls into any of the HIV high-risk categories:Information for Platelet Donors– a positive blood test for AIDS– past/present intravenous drug abuse– anyone engaging in prostitution– males who have/had sex with other males– females who have/had sex with males who have/had sex with othermales.– anyone who receives or has received clotting factor concentrates fora bleeding problem such as hemophilia– anyone with multiple sex partners• has had major surgery within one year or minor surgery within six weeks beforehis/her donation• has been to a malarial country or have taken malarial drugs in the last three years(RPCI’s Donor Center staff can identify those countries for potential donors)53

• has traveled to certain countries within prescribed time periods (These restrictions will bereviewed when a donor calls to schedule an appointment)• is on antibiotics:– taken orally – wait two weeks after last dose– injections – wait one month after your last shot– Tetracycline is acceptable• has had ear piercings, a tattoo or acupuncture within 12 months prior to donation• is pregnant or think she might be pregnant• has an active cold, cold sore, infection, asthma or allergy• is on certain prescription medicines (A potential donor must know the name and purposeof each prescription drug he/she is taking and give this information to the RPCI Donorstaff)• has blood counts (white cells, hemoglobin, platelets), blood pressure, pulse ortemperature that are not within normal limits (These will be checked on the day ofdonation prior to the procedure)Dos & Don’ts Prior to Donation:• Do not take aspirin or anything that contains aspirin for 72 hours before donatingplatelets.• Do not drink any alcoholic beverages within four hours of donating platelets.• Do not donate if feeling ill or if experiencing a headache on the scheduled donation day(Any minor irritations could cause a severe reaction during the donation process).• Do eat at least one hour before donating platelets.• Do call the Donor Center if unable to keep an appointment.What to Expect:Plateletpheresis is a blood donation process that allows an individual to give just one part ofhis/her blood – platelets – repeatedly. During the two-hour process, whole blood is drawn fromone arm and processed in a special cell separator machine to remove the platelets. Then thered cells are returned to the same arm.Blood never comes in contact with the pheresis machine. All materials used in the pheresismachine are sterile and disposable, and are discarded when the donation is completed. Thisprevents the transmission of diseases.Because a closed sterile system is used, individuals are exposed only to their own blood. Aperson cannot get AIDS or other diseases by donating platelets.54

Since the body produces more platelets than it needs, the volume donated has no adverseeffect on donors. The side effects experienced by some whole blood donors are avoided.Within a few days of donating platelets, the body replenishes its platelet supply. We usuallyadvise donating once every two weeks. Donors may donate as often as every 48 hours inan emergency situation upon approval of the medical director.After platelet donation, an individual may resume daily activities, but should avoid heavylifting for four hours.Blood typing is done on every collected platelet product, along with all required serologytests listed here. The law requires that all platelet products collected be tested for bloodand sexually transmitted diseases (HIV, hepatitis, syphilis, elevated liver enzymes, etc.)before they are transfused. Donors will be notified of any abnormal test results and askedto return to RPCI for further testing and evaluation, at no charge.Platelet donors may be eligible to become members of the National Marrow DonorProgram Registry. As members, donors are showing concern for the hundreds of peopleneeding a BMT. Donors can receive membership information from the Donor Center staff.HLA typing will be done free of charge after six donations of platelets.55

American Bone Marrow Donor RegistryP.O. Box 8841Mandeville, LA 70470-8841800-745-2452www.abmdr.orgProvides donor education, recruitment, testing and advocacy.American Cancer Society1599 Clifton Road, NEAtlanta, GA 30329800-227-2345www.cancer.orgProvides advocacy, research and information about various cancers and treatmentoptions; sponsors a cancer survivor network and support groups for cancer patient andtheir families.American Red Cross New York-Penn Region825 John StreetHenrietta, New York 14586888-808-4920http://chapters.redcross.org/br/nypennregion/Helps patients find compatible unrelated donors for transplants, and assists patients andtheir families in raising funds for tissue typing.Aplastic Anemia & MDS International FoundationP.O. Box 613Annapolis, MD 21404800-747-2820www.aplastic.orgProvides educational materials, a newsletter, and patient assistance, support andadvocacy.Blood and Marrow Transplant Information Network2900 Skokie Valley Road, Suite BHighland Park, IL 60035888-597-7674www.bmtinfonet.orgBMT Resources and Financial AssistancePublishes The Blood and Marrow Transplant Newsletter(www.bmtinfonet.org/newsletters), a quarterly newsletter for bone marrow, peripheralblood stem cell and cord blood transplant patients and survivors, and other literature.Attorney referral service for patients having insurance reimbursement problems. Linksprospective BMT patients with post-transplant patients.57

The Bone Marrow Foundation337 East 88 th Street, Suite 1BNew York, NY 10128800-365-1336www.bonemarrow.orgProvides financial aid, education and emotional support for bone marrow and blood stem celltransplant patients and their families.Caitlin Raymond International RegistryUniversity of MassachusettsMedical Center55 Lake Avenue NorthWorcester, MA 01655800-726-2824www.crir.orgComprehensive resource for patients and physicians conducting a search for unrelated donors.Cancer Care275 Seventh Avenue22nd FloorNew York, NY 10001800-813-4673www.cancercare.orgProvides counseling, education, information, referrals and direct financial assistance.Cancer Fund of America2901 Breezewood LaneKnoxville, TN 37921800-578-5284www.cfoa.orgProvides educational resources and products free of charge for adults and children with cancer,including nutritional supplements, diapers, bed pads, rubber gloves and hygiene kits.Cancer Information Service/National Cancer InstituteNCI Public Inquiries OfficeSuite 3036A6116 Executive Boulevard, MSC8322Bethesda, MD 20892-8322800-422-6237 (1-800-4-CANCER)www.cancer.govProvides most recent scientific information on cancers, treatment options and clinical trials.58

Hendrick Marrow Program4400 Papa Joe Hendrick BoulevardCharlotte, NC 28262704-455-0385www.hendrickmarrow.comSeeks to launch drives to recruit donors, raise funds for tissue typing and educatepeople about the National Marrow Donor Program.The HLA Registry Foundation70 Grand AvenueRiver Edge, NJ 07661888-HLA-DONORwww.hlaregistry.orgHelps patients find compatible unrelated donors for transplants, and assists patientsand their families with fundraising for tissue typing.Immune Deficiency Foundation40 W. Chesapeake Avenue, Suite 308Towson, MD 21204800-296-4433www.primaryimmune.orgPublishes a newsletter and educational literature. Regional chapters provide patientand family services, insurance reimbursement and educational programs.The Leukemia & Lymphoma SocietyWestern New York & Finger Lakes Chapter4053 Maple Road, Suite 110Amherst, NY 14226800-784-2368National Information Resource Center800-955-4572www.leukemia-lymphoma.orgFunds blood cancer research, education and patient services. Providessupplementary financial assistance to patients in significant financial need, up to$500 a year in reimbursements.Make-A-Wish Foundation3550 North Central Avenue, Suite 300Phoenix, AZ 85012-2127800-722-9474www.wish.orgAttempts to fulfill the special wishes of children with life-threatening illnesses.59

The MDS (Myelodysplastic Syndromes) FoundationP.O. Box 35336 Front StreetCrosswicks, NJ 08515800-MDS-0839www.mds-foundation.orgProvides referrals to Centers of Excellence, information on research and treatment options andeducational support.National Children’s Cancer Society1015 Locust, Suite 600St. Louis, MO 63101800-532-6459www.children-cancer.comProvides financial support to children up to age 18 and their families, for expenses related tocancer treatment including BMT, as well as education, information and advocacy.National Foundation for Transplants1102 Brookfield, Suite 200Memphis, Tennessee 38119800-489-3863www.transplants.orgHelps patients in need of a BMT organize fundraising activities and maintains accounts so donorscan make tax-deductible contributions on a patient’s behalf.National Marrow Donor Program3001 Broadway Street, NE, Suite 500Minneapolis, MN 55413-1753800-627-7692 (general information)888-999-6743 (patient advocacy)www.marrow.orgLeader in the facilitation of unrelated marrow and blood stem cell transplants. Patient advocatesavailable to answer questions and to help with financial issues.RPCI Blood and Marrow Transplant Wellness Support GroupA Blood and Marrow Transplant Wellness support group for patients and caregivers meetsat RPCI each month and is run by a social worker and nurse from the BMT unit. This canbe a helpful source of support and information for individuals or families considering,undergoing or recovering from a BMT. The Department of Social Work and CaseManagement can provide more information.The following website also contains very helpful information:http://www.interlinkhealth.com/useful_connections.html60

Arterial Blood Gas (ABG). Blood test measures the amounts of oxygen andcarbon dioxide in the blood, as well as the acidity (pH) of the blood. A bloodsample is taken from an artery, usually in the wrist. It is normal to feel a sharpstick momentarily when the technician or nurse inserts the needle. Pressuremust be applied to this area for a short time afterward to prevent bleeding. Thistest provides important information about how effectively the lungs are deliveringoxygen to the blood and how efficiently they are eliminating carbon dioxide fromit. The test also indicates how well the lungs and kidneys are interacting tomaintain normal blood pH.Bone Marrow Aspiration or Biopsy. A small amount of bone marrow, usuallyfrom the back of the hip, is collected to determine how the bone marrow isfunctioning. Before insertion of the bone marrow aspiration needle, the aspirationsite is numbed with local anesthesia. Most people feel pressure as the needle isinserted and a few seconds of pain when the bone marrow fluid is withdrawn.With a bone marrow biopsy a small piece of bone is removed. A biopsy may beslightly more painful, but only during the time that the procedure is being done.Bone Scan. An imaging test that creates pictures of the bones on a computerscreen or on film. A small amount of radioactive material is injected into a bloodvessel and travels through the bloodstream; it collects in the bones and isdetected by a scanner. During the scan, which usually takes about an hour, thepatient lies on his or her back on a table, but may be repositioned to the stomachor side during the study. It is important for the patient not to move, except whendirected to by the technologist.Chest X-Ray. An x-ray of the structures inside the chest. An x-ray is a type ofhigh-energy radiation that can go through the body and onto film, showing areasinside the chest, the condition of the lungs and if the patient has pneumonia.Chest x-rays can be taken at the bedside or in the Diagnostic ImagingDepartment. A hard plate containing film is placed behind the back. During theactual time of exposure, the technologist will ask the patient to hold his or herbreath. It is very important in taking a chest x-ray to ensure there is no motionthat could ruin the quality and sharpness of the film image. The procedure takesjust a few minutes and the time patients must hold their breath is a matter of afew seconds. This test is routine for all BMT patients. Other x-rays – abdominal,sinus or pelvis – may be done as well. The procedure is basically the same foreach type of x-ray.Laboratory Tests & ProceduresComputed Tomography (CT) Scan. A type of three-dimensional x-ray used toview various body structures; also known as a computerized tomography scan ora computerized axial tomography (CAT) scan. This may be done with or withoutcontrast dye, which is a fluid injected into the bloodstream to aid in theexamination of the x-ray.If a contrast dye has been ordered, a series of pictures taken, then a smallamount of contrast dye is injected, followed by a second pictures. If no contrast61

dye was ordered, only one set of pictures is taken. The procedure is painless and the timevaries depending on which part or parts of the body are scanned.Dialysis. A method of removing impurities or waste products (toxins) from the blood whenthe kidneys are unable to do so. There are different ways of doing dialysis:Hemodialysis uses a special type of filter to remove excess waste products and water fromthe body. Blood leaves the body through a tube in an artery, and then passes through afilter in the dialysis machine (dialysis or semipermeable membrane). A solution (dialysate)on the other side of the membrane receives waste products from the blood, then the cleanblood is returned to the body through a vein.CAVH and CVVH (see glossary) are other methods by which dialysis is performedcontinuously through access in an artery and vein.Peritoneal dialysis uses the lining of the abdomen as a blood filter. A catheter placed intothe abdomen is used to fill the abdominal cavity with dialysate. Waste products and excessfluids move from the patient’s bloodstream into the dialysate solution. After a waitingperiod, the waste-filled dialysate is drained from the abdomen, and replaced with cleandialysate.Electrocardiogram (ECG or EKG). The patient disrobes from the waist up, andelectrodes (tiny wires in adhesive pads) are applied to specific sites on the arms, legs, andchest. The wires are attached to a machine that records the electrical activity of the heartonto a paper strip. The process takes only a few minutes and is painless.Gallium Scan. A nuclear medicine test, which uses a special camera that detects gallium,a radioactive chemical substance known to accumulate in inflamed, infected, or canceroustissues. An injection of gallium is given in advance of the scan, usually 24-48 hours; thetimeframe is based on the area or organs of the body being studied. For the study itself,the patient lies very still for approximately 30-60 minutes. A camera is moved across thepatient’s body to detect and capture images of concentrations of the gallium. The cameramay occasionally touch the patient’s skin, but will not cause any discomfort. A clickingnoise may be heard throughout the procedure.Lumbar Puncture (LP). A procedure where a sterile needle is introduced into the lowerspine to collect cerebrospinal fluid (CSF) for diagnostic purposes. The patient is typicallylying down sideways for the procedure. Less often, the procedure is performed while thepatient is sitting up. After local anesthesia is injected into the small of the back (the lumbararea), a needle is usually inserted in between the 3rd and 4th lumbar vertebrae into thespinal canal. Headaches, which are not uncommon after LP, occur less frequently when thepatient remains lying flat 1-3 hours after the procedure.Magnetic Resonance Imaging (MRI). A procedure that uses radio waves and a powerfulmagnet linked to a computer to create detailed pictures of areas inside the body. Thesepictures can show the difference between normal and diseased tissue. MRI makes betterimages of organs and soft tissue than other scanning techniques, such as CT or x-ray. MRIis especially useful for imaging the brain, spine, the soft tissue of joints, and the inside of62

ones. After a series of pictures are taken, contrast dye may be injected into avein, followed by another set of pictures. The machine produces loud thumpingand humming noises during normal operation. An MRI is painless and has theadvantage of avoiding x-ray radiation exposure, but some patients may feelclaustrophobic from being inside the scanner. People with pacemakers or othermetal objects implanted into their bodies should NOT have an MRI.Multiple-Gated Acquisition (Muga) Scan. A non-invasive test that measuresthe function of the heart by using radioactive tracers to make heart chambersand blood vessels visible. Instruments do not touch the heart structures.Electrodes may be placed on the chest. An intravenous line will be placed intothe arm to inject the radioactive isotope, then a camera or scanner will be placedover the chest area to process the images. The scan may be repeated duringexercise on a treadmill or stationary bicycle.Pulmonary Function Tests (PFTs). A broad range of tests that measure howwell the lungs take in air (lung volume measurement), exhale air (spirometry) andhow efficiently they transfer oxygen into the blood (diffusion capacity). Routinelydone before a BMT, these painless breathing tests take approximately 60 to 90minutes.Total Body Irradiation (TBI). Radiation is delivered to the entire body to kill anydiseased cells or bone marrow. Treatment is given in the Division of RadiationMedicine and takes approximately 45 minutes per session.Ultrasound. A noninvasive test that uses high-frequency sound waves toproduce images of the organs and structures of the body. A clear, water-basedgel that helps transmit sound waves is applied to the skin over the area beingexamined. The sound waves are sent through body tissues with a probe (atransducer) that is placed on the skin, then reflected by internal structures as“echoes.” These echoes return to the transducer and are transmitted electricallyonto a viewing monitor, then recorded on a film or on videotape. Ultrasoundtesting is painless and harmless.24-hour Urine Collection. A 24-hour specimen collection of urine used todetermine kidney function. To collect a 24-hour urine:• On day 1, urinate into the toilet upon arising in the morning.• Collect all urine (in a special container) for the next 24 hours.• On day 2, urinate into the container in the morning upon arising.• Cap the container. Keep it in the refrigerator or a cool place during thecollection period. Label the container with your name, the date, the time ofcompletion, and return it as instructed.63

Medications that may be used to treat BMT patientsAntibioticsThese medications are used to prevent and treat infections. They can be given by mouth(pills, capsules or liquids) or, most often, intravenously (through your long-term IV catheter).Drug Used for Possible side effectsAzactam®(aztreonam)Treats respiratory and urinary tract infectionsNausea, diarrheaBactrim®, Septra®(trimethoprim,sulfa-methoxazole)Biaxin®(azithromycin)ceftriaxoneCleocin®(clindamycin)dapsoneFlagyl®(metronidazole)gentamicinLevaquin®(levofloxacin)pentamidinePrimaxin®(imipenem)Nebcin®(tobramycin)Tazideme®, Fortaz®(ceftazidime)Vancocin®(vancomycin)Treats urinary, ear and respiratory infectionsPrevents infection in neutropenic patientsTreats upper and lower respiratory, skin andear infectionsTreats respiratory, urinary, skin and bone infectionsTreats infections in penicillin-sensitive patientsPrevents PCP infection in Bactrim®-allergic patientsTreats intra-abdominal, central nervous system, andrespiratory tract infectionsTreats gastrointestinal, respiratory, urinary infectionsTreats chronic bronchitis and community-acquiredpneumoniaPrevents PCP infectionTreats respiratory and urinary infectionsTreats gastrointestinal, respiratory, urinaryand central nervous system infectionsTreats respiratory, urinary and intra-abdominalinfectionsTreats mainly skin and soft tissue infectionsNausea, rash, diarrhea, headache,fatigue, sun sensitivityDiarrhea, nausea, abnormal taste,headache, abdominal discomfortSore mouth/tongue, mild diarrhea,abdominal cramping, vaginal itchingand dischargeNausea, vomiting, diarrhea, rashRed blood cell damage and otherblood effectsNausea, vomiting, diarrhea, headache,rashNausea, vomiting, rash, kidneyand ear toxicityDizziness, drowsiness, visual changes,nausea, vomiting, diarrhea, dry orpainful mouth, headacheDecrease in white or red blood cells,platelets or cardiovascular effectsNausea, vomiting, diarrhea, rash,headache, cross sensitivity w/penicillinNausea, vomiting, rash, kidney andear toxicityNausea, vomiting, diarrhea, headache,rashNausea, rash, chills, fever, flushing,kidney toxicity64

AntifungalsMedications used to prevent and treat fungal infections. They may be given in oral or IV form.Drug Used for Possible side effectsDiflucan®(fluconazole)Sporanox®(itraconazole)caspofunginvoriconazoleTreats or prevents esophageal and oropharyngealcandidiasis and other serious systemic CandidainfectionsMust be taken with an acidic beverage (e.g., colabeverage) to maintain effectivenessNausea, diarrhea, headacheNausea, vomiting, or rashHeadache, decrease in red blood cells,white blood cells and platelets, decrease inpotassiumRare, but headache, peripheral edema,visual changes are most reportedAntiviralsMedications that cure or control virus infections. They may be given in oral or IV form.acyclovir(Zovirax®)Drug Used for Possible side effectsTreats and/or prevents herpes simplexor herpes zoster (chicken pox)Nausea, loss of white blood cells orplatelets, headache, fatigueCytovene®(ganciclovir)Foscavir®(foscarnet)Treats cytomegalovirus (CMV)Treats cytomegalovirus (CMV) andherpes simplex and varicella zostervirusesNausea, vomiting, diarrhea, decrease inwhite blood cells or platelets (generallyreversible when treatment ends)Kidney problems, headache, fatigueAntidiarrhealsMedications used to treat diarrhea.DrugImodium®(loperamide hydrochloride)Lomotil®(diphenoxylate hydrochloride withatropine sulfate)Drowsiness, dry mouth, abdominal painDrowsiness, dizziness, dry mouthPossible side effects65

Analgesics (Pain Relievers)Medications used to prevent, reduce, and treat discomfort.codeineDrug Used for Possible side effectsModerate to severe pain,to suppress nonproductive coughsDrowsiness, nausea, vomiting,constipationDemerol®(meperidine hydrochloride)Dilaudid®(hydromorphone hydrochloride)morphinefentanyl(patch/intravenous/intramuscular/oral suckers)oxycodoneModerate to severe pain, toprevent side effects ofamphotericin-BMild, moderate to severe painModerate to severe painModerate to severe painModerate to severe painDizziness, nausea, vomiting,hypotensionNausea, vomiting, drowsiness,rash, constipationConstipation, hypotension,vomitingCentral nervous system effects(sleepiness, confusion),hypertension/hypotensionSleepiness, dizziness,headache, constipation, nausea,vomiting and dry mouthAntiemeticsMedications that reduce or eliminate nausea and/or vomiting.DrugPossible side effectsAtivan®Dizziness, drowsiness, hypotension(lorazepam)Benadryl®(diphenhydramine hydrochloride)Compazine®(prochlorperazine)Kytril®(granisetron hydrochloride)Phenergan®(promethazine)Zofran®(Ondansetron hydrochloride)Drowsiness, hypotensionDizziness, hypotension, or extrapyramidal symptoms (e.g., abnormal positioning,extreme restlessness, tremors, weakness of extremities)Headache, loss of strength, fever, drowsiness, diarrhea, constipation, weaknessCardiovascular, dizziness, rashHeadache, drowsiness, diarrhea, constipation, fever, weaknessAnticoagulantsMedications used to prevent blood clotting.DrugalteplaseBleeding, bruisingPossible side effectsLovenox®(enoxaparin)Bleeding, fever, low platelet count66

Diuretics (“Water Pills”)Help the body get rid of excess fluid by causing it to make more urine.Lasix®(furosemide)Zaroxolyn®(metolazone)DrugPossible side effectsDiarrhea, itching, dizziness, decreased potassium, hypotension,urinary frequencyUrinary frequency, dizziness, diarrhea, hypotension, decreasedpotassium, rashGrowth (Colony Stimulating) FactorsProteins that stimulate growth of specific cell types in the blood and the immune system. Becausegrowth factors stimulate the growth of blood cells in the bone marrow, they may be used to treatpatients with low blood cell counts.Aranesp(darbepoetin alfa)Leukine®(GM-CSF, sargramostim)Neupogen®(G-CSF, filgrastim)Procrit®(epoetin alfa)ImmunosuppressantsDrug Used for Possible side effectsLong-acting protein produced by the kidneythat stimulates red blood cell productionStimulates production of neutrophils,monocytes and eosinophils. Monocytesfight against bacteria and fungi. Eosinophilsare involved in the body’s allergic responseStimulates the production of whiteblood cells called neutrophils, thefirst line of defense against bacteriaProduced by the kidney, stimulatesred blood cell productionFatigue, diarrhea, swelling,feverFever, headache, bone pain,chills, muscle achesNausea, bone pain, fever,fatigueFever, diarrhea, nausea,vomitingDrugPrograf®(FK-506, Tacrolimus)Sandimmune®(Cyclosporine)Used forPrevents and/or treats graft versus host diseasePrevents and/or treats graft versus host diseaseSuppressors of Menses (Menstruation)Premarin®(estrogen)DrugProvera®(medroxyprogesterone acetate)Breast pain, flushing, nausea, vomitingNausea, vomiting, rashPossible side effectsSuppressors of Stomach AcidMedications that suppress gastric acid secretion.Pepcid®(famotidine)Prilosec®(omeprazole)Protonix®(pantoprozole)67

Ablation. The administration of high-dose chemotherapy and/or radiation priorto stem cell transplantation. Its purpose is to destroy diseased or malignant cellsand to empty the bone marrow of cells to make room for new cells. Also referredto as a conditioning or preparative regimen.Absolute Neutrophil Count (ANC). Total number of neutrophils present in theblood. When a patient’s ANC is less than 1500/mm 3 , he or she is said to beneutropenic and severely neutropenic if less than 500/mm 3 . Engraftment foradults and children is defined as the point at which a patient has a sustainedANC of greater than 500/mm 3 .Acute. Condition having severe symptoms of short course.Acute Graft Versus Host Disease (GVHD). Type of graft versus host disease thatoccurs within the first 100 days after transplant.Alkaline Phosphatase. Enzyme produced by the liver and bone. An elevatedlevel in the blood may indicate a liver or bone problem.ALL.Acute lymphoblastic (or lymphocytic) leukemia.Allogeneic Stem Cell Transplant. A transplant in which the stem cells comefrom a specially matched donor.Alopecia. Loss of hair.AML.Acute myeloblastic (or myelocytic) leukemia.Anemia. A condition in which there is a decreased number of red blood cells.Symptoms may include fatigue, weakness, pallor, shortness of breath and a fastheartbeat. Anemia in men and women is defined as a hemoglobin level below 12g/dl.Anaphylaxis. Acute allergic reaction, symptoms of which include shortness ofbreath, rash, wheezing, and drop in blood pressure.Glossary of Terms and AbbreviationsAntibiotic. A drug used to treat bacterial infections.Antibody. A protein made by the immune system that is capable of recognizinga specific substance or marker on a cell.Anticoagulant.A drug used to prevent blood from clotting.Antiemetic. A drug used to control nausea or vomiting.Antigen. Chemical structures in cells that can be recognized by a person’sbody as foreign and then cause a reaction.69

Apheresis. A process in which blood is taken from a donor, a blood component isseparated out, and the remaining blood components are returned to the donor. In the caseof peripheral blood stem cell collection, the white blood cell component, which contains thestem cells, is separated out.Apheresis Machine. A machine used to perform apheresis (separation out of certain typesof blood cells from the blood); also known as a cell separator.Aplastic Anemia. Non-cancerous blood disorder in which the bone marrow is notfunctioning and the patient is not making adequate red blood cells, white blood cells andplatelets.Arterial Blood Gas (ABG). Blood test to check the level of oxygen in the blood. Thesample is drawn from an artery (generally in the wrist).Arterial Catheter. Catheter inserted into an artery to monitor continuous arterial pressureand to obtain serial arterial blood samples with minimal discomfort to the patient.Autologous Stem Cell Transplant. A transplant in which the stem cells are taken fromthe patient, preserved and frozen, and later returned to the patient.Bacteria. Microscopic organisms that invade human cells, multiply rapidly and producetoxins that interfere with normal cell functions.Baseline Test. Measures an organ’s normal level of function. Used to determine if anychanges in organ function occur following treatment.Bilirubin. A substance, made by the liver when RBCs are broken down, which is one ofthe components of bile. When the liver is not working, bilirubin levels build up and maycause a yellowing of the skin.Blast Cell. An immature cell.Blast Crisis. Advanced stage of leukemic relapse when the patient has a large number ofcirculating blast cells.Blood and Marrow Transplant (BMT). A type of stem cell transplant in which the stemcells are obtained from the bone marrow. The term “bone marrow transplant” is sometimesused to indicate either a peripheral blood or bone marrow stem cell transplant.Blood Progenitor Cells (BPCs). A type of blood cell capable of self-renewal andrepopulation of damaged bone marrow, restoring the production and development of bloodcells.Blood Typing/Cross Matching. Blood cells have factors that are not the same in allpeople. Before a transfusion, blood samples from the donor and the patient are typed, orclassified, (type A, AB, B or O) to match them. Once typed, the samples are cross-matchedto confirm that they are compatible.70

Bone Marrow (BM). The soft spongy material in the center of bones that produces all ofthe body’s blood cells.Bone Marrow Aspiration and Biopsy. The removal of a small portion of bone marrowusing a small needle, followed by microscopic evaluation of the cells present.Bone Marrow Registry. A national or international listing of potential stem cell donors thatcan serve as a “matchmaker” between a donor and a patient needing a stem celltransplant.Cardiac. Pertaining to the heart.Candida. A type of yeast that can cause infection in BMT patients.Catheter.A flexible plastic tube inserted into the body to give or remove fluids.CAVH or CAVHD (Continuous Arterio-Venous Hemodialysis); CVVH (ContinuousVenous Hemodialysis). Alternatives to hemodialysis and peritoneal dialysis to removeexcess fluid and waste products from the bloodstream.Cell Separator.See apheresis machine.Central Venous Catheter (Long-Term Intravenous Catheter). A soft plastic, flexibletube inserted into the large vein in the chest above the heart through which medication canbe given and blood drawn without multiple needle sticks. Also known as a central venousline or right atrial catheter; types include the Hickman catheter and Quinton catheter.Chemotherapy. Drugs used to destroy or slow the growth of abnormal (usually cancer)cells.Chronic.Persisting for a long time.Chronic Graft Versus Host Disease (GVHD).after transplant.A type of GVHD that occurs 100 daysClinical Trial.disease.A research study designed to evaluate new and better treatments forCLL.CML.CNS.Chronic lymphocytic leukemia.Chronic myelocytic leukemia.Central Nervous System.Colony Stimulating Factor (CSF). A substance that stimulates the growth anddevelopment of blood cells; also known as a hematopoietic growth factor. Certain CSFs71

are used to mobilize peripheral blood stem cells and are given after the stem celltransplant to reduce the risk of infection.Complete Blood Count (CBC). A test that determines whether the proper number of redblood cells, white blood cells and platelets are present in the patient’s blood.Conditioning Regimen. See ablation.Conjunctivitis.Eye inflammation.Cord Blood Cells. Cells obtained from an umbilical cord or placenta after delivery of ababy; these are a rich source of stem cells.Cryopreservation.The process of preserving and freezing cells.Cytomegalovirus (CMV).A type of virus that is not usually harmful in healthy individuals,but can cause problems, especially pneumonia, in people with low resistance to infection.Culture. Specimens taken of body fluids or tissues which then are allowed to grow in thelaboratory to document the presence of infection and identify the organism responsible.Dialysis. A process by which a patient’s blood is filtered because the kidneys are notfunctioning properly.Dimethyl Sulfoxide (DMSO).cells.A chemical used in the cryopreservation of various types ofEchocardiogram. A test that records the position and motion of the heart.Edema.Swelling caused by the abnormal accumulation of fluid in body tissues.Electrocardiogram (ECG, EKG). A test that measures the electrical activity of the heart.Electrolytes. Electrically charged particles such as sodium and potassium found in thebloodstream. The correct level of each is important for the overall body function.Emesis.Vomit.Engraftment. The process in which transplanted tissue “takes” and begins to functionnormally. In the case of stem cell transplants, engraftment refers to the time when newblood cells begin to be produced.Erythema. Redness of the skin.Erythrocyte.See red blood cell.Febrile.Having a fever.72

Foley Catheter. Soft, flexible plastic tube inserted into the bladder to provide continuousurinary drainage.Fungus (Plural fungi). Primitive life form(s) that can cause infection in the body. Candidaand Aspergillus are fungi that sometimes cause infection in post-transplant patients.Gastrointestinal (GI) Tract. The digestive system, which extends from the mouth to theanus and is responsible for receiving food, breaking it down into nutrients (digestion),absorbing these nutrients into the bloodstream and, finally, eliminating all the indigestibleparts of the food from the body.Graft Failure. A complication of transplantation in which the transplanted tissue does notfunction. In the case of a stem cell transplant, graft failure may be due to graft rejection ormay result when the donated cells fail to produce new cells.Graft Rejection. A complication of transplantation in which the recipient’s immune systemrecognizes the transplant as foreign and mounts an attack against it. Graft rejection mayresult in failure of the transplant to engraft.Graft Versus Host Disease (GVHD). A rejection process in which the transplanted stemcells (the graft) attack tissues in the recipient (the host). The organs usually affected arethe skin, gastrointestinal tract and liver. See acute GVHD and chronic GVHD.Graft Versus Tumor Effect. A beneficial effect seen with allogeneic stem cell transplant inwhich the transplanted stem cells (the graft) attack the recipient’s tumor cells.Granulocyte.granulocyte.A type of white blood cell; neutrophils are the predominant type ofHematocrit. The percentage of total blood volume that consists of red blood cells. A lowcount can indicate anemia. Normal hematocrit levels average 41% and 43% in youngwomen and men (12 to 18 years old), respectively, and 41% and 47% in older women andmen (18 to 49 years old), respectively.Hemoglobin. The part of red blood cells that carries oxygen to the tissues.Hematopoietic Growth Factor.See colony-stimulating factor.Hemorrhage. To bleed.Hemorrhagic Cystitis. Inflammation of bladder with bleeding.HEPA Filtration. Air filtration system that purifies the rooms of transplant patients.Herpes Simplex Virus (HSV). A type of virus that causes cold sores and other viralinfections.73

Hickman Catheter.Type of central venous catheter.HLA Typing. A series of tests done before transplant to determine how closely the tissuesof a donor and recipient match.Human Leukocyte Antigens (HLA). Special marker proteins found on white blood cells.HLA tissue typing is done to determine whether recipient cells and potential donor cells“match.”Hyperalimentation. An intravenous solution with high nutritional content given in place oforal food intake when someone is unable to eat; also called total parenteral nutrition (TPN).Hyperpigmentation.Darkening of skin.Hypertension.Hypotension.High blood pressure.Low blood pressure.Iliac Crest. Part of the hipbone where a large quantity of bone marrow is concentrated.Immune System. The body’s frontline defense against diseases and infections; includesthe bone marrow, blood, thymus gland, lymph nodes and spleen.Immunocompromised. A condition in which the immune system is not functioningnormally and patient is at increased risk for infection.Immunosuppression. A decrease in the ability of the immune system to fight infection.Immunosuppression can be caused by chemotherapy and radiation therapy.Interstitial Pneumonia. A nonbacterial, nonfungal pneumonia that infiltrates small spacesbetween the cells in the lungs. It can be a complication of transplantation.Intravenous (IV).Administration of fluids or medications into a vein.Jaundice. A yellowing of the skin and whites of the eyes, usually the result of liverdisease. Less common causes are drug reactions or hemolysis, a blood disorder. It is asign that the liver is not functioning properly.Leukemia. Cancer that starts in blood-forming tissue such as the bone marrow, andcauses large numbers of blood cells to be produced and enter the blood stream.Leukocytes. White blood cells, which play a major role in the body’s immune system.Leukocytes are divided into three main subgroups: granulocytes, lymphocytes andmonocytes.Leukopenia. A white blood cell count that is below an adult’s normal range of 4,500 to11,000 cells/mL.74

Liver Function Tests (LFTs). Laboratory tests performed on a blood sample that giveinformation about how well the liver is functioning.Lymphocyte.infection.Lymphoma.A type of white blood cell that helps protect the body against disease andCancer that begins in the cells of the immune system.Metastatic. Spread of cancer from the organ or tissue of origin to another part of thebody.Mini-Transplant. Type of allogeneic transplant that involves the use of lower doses ofchemotherapy and does not completely destroy the bone marrow; also known as a nonmyeloablativetransplant.Mobilization. The administration of colony-stimulating factors to cause stem cells toleave the bone marrow and enter the blood stream; used prior to peripheral blood stem cellharvesting to increase the number of stem cells available for collection.Monocyte/Macrophage. A type of white blood cell that surrounds and killsmicroorganisms, removes dead cells, and stimulates the action of other immune systemcells.Mucositis. Painful inflammation of the mucous membranes of the digestive systemcaused by chemotherapy, radiation or infection. Commonly occurs as mouth sores.Multiple Myeloma. Cancer that arises from plasma cells (a type of WBC that producesantibodies) in the bone marrow.Neutropenia. Low neutrophil count (

Preparative Regimen. See ablative.PRN.Abbreviation for the Latin “pro re nata” which means “as needed.”Prognosis.Predicted or likely course of a disease; the chance of recovery or recurrence.Prophylactic.Preventive or protective measures.Protocol.Standardized plan of treatment.Pulmonary.Pertaining to the lungs.Pulmonary Artery Catheter. Multiple lumen catheter inserted into the inferior vena cavaand advanced through the chambers of the heart to the pulmonary artery, used to measurethe pressures of the heart. It is used to monitor various medical conditions such as fluidoverload (hypovolemia), sepsis (the presence of bacteria or their toxins in the blood ortissues), renal failure (loss of the kidney’s ability to clear waste products from the body) orcomplex circulatory conditions. Also called Swan-Ganz catheter.Pulse Oximeter. A medical device that measures the level of oxygen in blood (oxygensaturation).Quinton Catheter.A type of central venous catheter.Radiation Therapy. A type of cancer treatment that uses high-energy rays (x-rays,gamma rays, neutrons, etc) to damage or kill cancer cells.Red Blood Cell (RBC). A type of blood cell that carries oxygen to all tissues in the body;also known as an erythrocyte.Relapse. Recurrence of disease following treatment.Remission. The decrease or disappearance of all signs and symptoms of disease; noclinical or microscopic evidence of disease.Renal.Pertaining to kidneys.Right Atrial Catheter.See central venous catheter.Sepsis. The presence of bacteria or their toxins in the blood or tissues.Sperm Banking. The process of collecting, freezing and storing sperm to be used at alater date.Stem Cell. An immature cell in the blood or bone marrow that produces new bone marrowand blood cells after transplantation.76

Stem Cell Harvest. The process of using a needle and syringe to collect stem cells fromthe marrow in the center of the bones (usually from the hip bone), or from the peripheralblood.Stem Cell Transplant. The process by which the patient’s bone marrow is destroyed byhigh dose chemotherapy, radiation, or both, and then replaced either with new stem cellsfrom a donor or with the patient’s own previously harvested stem cells.Steroid. A type of medication commonly used with other drugs to prevent or control graftversus host disease.Stomatitis.Inflammation of the mouth, with or without mouth sores.Syngeneic Stem Cell Transplant.donor.A stem cell transplant in which an identical twin is theT Lymphocyte (T cell). A type of lymphocyte (white blood cell) that fights infection.Lymphocytes also are responsible for graft versus host disease after transplantation.Thrombocyte.See platelet.Thrombocytopenia. A lower than normal number of platelets in the blood, which canresult in impaired blood clotting, excessive bleeding, and bruising.Tissue Typing. See HLA typing.Total Body Irradiation (TBI). Radiation treatment of the entire body, used to destroymalignant cells and bone marrow in preparation for a stem cell transplant.Total Parenteral Nutrition (TPN).See hyperalimentation.Transfusion. The infusion of whole blood, or specific blood cells that may be lacking untilthe bone marrow starts producing its own.Toxin.Poison.Veno-Occlusive Disease (VOD). A disease caused by obstruction of blood flow throughthe small blood vessels in the liver, resulting in liver damage.White Blood Cell (WBC). A type of blood cell that helps the body fight infection. WBCsinclude granulocytes, lymphocytes and monocytes.77

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