Allogeneic Transplant Patient Education Guide

Transcription

1 Allogeneic Tansplant Patient Education Guide Blood & Maow Tansplant Pogam Taussig Cance Institute Copyight The Cleveland Clinic Foundation. All ights eseved.

2 Definitions of Tems Table of Contents Welcome to the Blood & Maow Tansplant Pogam Tansplant Team Phone Numbes Welcome to the Tansplant Pogam Tansplant Oveview Bone Maow and Tansplantation Impotant Cleveland Clinic Phone Numbes Pe-Tansplant/Cental Line Cae Pe-Tansplant Evaluation Requied Tests & Appointments Dono Health Histoy Sceening Questionnaie (Autologous Patients Only) Dental Cleaance (Allogeneic Patients Only) Financial Questions to Ask Common Repoductive Issues You Cental Venous Cathete How to Avoid Poblems With You Cental Venous Cathete Injection Cap Change Cental Venous Cathete Tanspaent Dessing Change Cathete Flushing with Nomal Saline Pefilled Syinges How to Give Youself Subcutaneous Injections When You Need to Know About Neupogen Pleixafo Social Wok Intoduction to Social Wok Pepaing fo You Hospital Stay Packing fo You Hospital Stay Cae-Patne Advance Diectives Resouces/Suppot Goups/Lodging Continued Table of Contents The infomation povided in this guidebook is fo educational use only. This infomation is not intended to eplace the medical advice of you docto o health cae povide. Please consult you health cae povide fo advice about you specific medical condition.

3 You Tansplant You Dono s Expeience (Allogeneic Patients Only) The Tansplant Pocess & Sample Calendas Common Inpatient Medicines (Not in Reduced Intensity Binde) You Pepaative Regimen What to Expect Duing You Hospital Stay Staying Active Duing You Hospital Stay Peventing Cental Line-Associated Bloodsteam Infections (CLABSIs) while in the hospital Music Theapy Mouth Cae Schedule How to Cope With Side Effects CMV (Allogeneic Patients Only) Blood Tansfusions Neutopenic Pecautions Thombocytopenic Pecautions Tansplant Medicines Tansplant Medicines Oveview What you Should Know About You Medications & Pesciption Coveage (Allogeneic Patients only) You Tansplant Medicines Follow-Up Cae Afte You BMT Contacting the Team Afte Tansplant Fequent Laboatoy Testing Follow-up Appointments Afte Tansplant Things to Know Befoe Dischage (Not in Reduced Intensity Binde) Taking You Tempeatue Peventing Infections Afte Tansplant Recommended Vaccination Schedule Nutition Afte Tansplant Food Safety Guidelines Resuming Sexual Activity Taking You Blood Pessue Daily Recodkeeping Log Medication Calendas (Allogeneic Patients Only) Gaft-vesus-Host Disease (Allogeneic Patients Only) Gaft-vesus-Host Disease (GvHD): An Oveview Gaft-vesus-Host Disease of the Skin Gaft-vesus-Host Disease of the Eyes Gaft-vesus-Host Disease of the Live Gaft-vesus-Host Disease of the Gastointestinal (GI) Tact Nutition Guidelines fo GvHD Keeping You Healthy Post-Tansplant Cae Guide Copyight The Cleveland Clinic Foundation. All ights eseved. Poduced by Cente fo Consume Health Infomation Rev 10/15/2014

4 Definition of Tems Absolute Neutophil Count (ANC) The total numbe of neutophils in you white blood cell count. (See neutophils. ) Antibody A potein poduced by the white blood cells (leukocytes) to battle foeign substances, such as bacteia, that ente the body. Acute Lymphoblastic Leukemia (ALL) A fast-gowing cance of the lymphocytes, one of the white blood cells. Also called acute lymphocytic leukemia. Appeas most often in childen, but can occu in adults. Acute Myelogenous Leukemia (AML) A cance of the myelocytes, one of the white blood cells. Also called acute nonlymphocytic leukemia. AML occus in all ages and is the moe common acute leukemia in adults. Adjuvant Chemotheapy Dugs used to kill cance cells. They ae given with othe teatments, such as sugey o adiation, to destoy aeas of tumo. Allogeneic Bone Maow Tansplant A type of bone maow tansplant whee the cells a patient eceives ae not thei own. The dono can be a elated family membe o a closely matched unelated dono. Alopecia A patial o complete hai loss, usually a tempoay side effect of the chemotheapy. Anemia A deficiency in the numbe of ed blood cells. (See ed blood cells. ) Antigen A foeign substance, such as bacteia o toxin, that induces a specific immune esponse. Apheesis The pocess by which peipheal blood HPC s (blood stem cells) ae collected. Autologous Tansplant A type of bone maow tansplant duing which the patient eceives his o he own bone maow/stem cells. Blood Count A measuement of the diffeent components that make up the blood. Bone Maow The spongy tissue found in the cavities of the body s bones whee all blood cells ae poduced. Bone Maow Havest The pocedue of collecting stem cells fom the bone maow. Bone Maow Tansplant (BMT) A pocedue duing which bone maow, peipheal stem cells o umbilical cod stem cells ae infused following chemotheapy. (See autologous, allogeneic, and syngeneic, educed intensity and umbilical cod blood tansplants. ) Definition of Tems

5 Blood Stem Cells See Hematopoietic pogenito cells Cental Line o Cental Venous Cathete A small, plastic tube inseted in a lage vein. The cental line used in a stem cell tansplant allows blood samples to be dawn and dugs to be given, as well as the actual infusion of cells. Chemotheapy Teatment with one o moe anti-cance dugs to ty to stop o slow the gowth of cance cells. Chonic Lymphocytic Leukemia (CLL) A cance of the lymphocytes, one of the white blood cells. CLL is moe common in men ove the age of 60. Chonic Myelogenous Leukemia (CML) A cance of the myelocytes, one of the white blood cells. CML can occu at any age but is most often found in people ove the age of 45. Clinical Tials Reseach studies that test new teatments using devices o dugs. Collection Centes National Maow Dono Pogam (NMDP) facilities that collect of peipheal stem cells and bone maow. Colony Stimulating Facto o Gowth Facto The dug given to incease the numbe of stem cells in the blood. Also called Filgastim, Neupogen, G-CSF. Conditioning See pepaative egimen. Confimatoy Typing (CT) A tissue typing test done at the tansplant cente to make sue the dono and patient match. Cod Blood The blood of newbons found in the umbilical cod and placenta that contains lage numbes of blood stem cells. (See umbilical cod blood stem cell.) Cod Blood Bank An oganization that helps to collect and stoe umbilical cod blood fo tansplant. Cytomegalovius (CMV) A hepes vius that can occu in immunocompomised patients. DNA (Deoxyibonucleic Acid) The mateial thoughout the body that caies you cells genetic infomation. DNA-Based HLA Typing Human leukocyte antigen (HLA) is a system of makes found on white blood cells (leukocytes) that the immune system ecognizes. DNA-based HLA typing uses pecise (DNA) methods of testing to detemine and epot specific HLA antigens. This test is pefomed on ecipients and donos to confim an acceptable match exists. Dono A voluntee who has donated stem cells o bone maow fo a patient. Dono Cente An NMDP-accedited oganization with the expeience, staff and facilities to ecuit and manage inteaction with voluntee stem cell donos. Dono Wokup The pocess that a potential dono goes though to make sue he o she is healthy and eady to donate maow o blood stem cells. A wokup includes a detailed infomation session egading the donation pocess, a complete physical exam, and blood tests. Engaftment The pocess duing which tansplanted stem cells begin to gow in the ecipient s bone maow and poduce new white blood cells, ed blood cells, and platelets. Epidual Anesthesia A fom of anesthesia in which medicine is inseted into the oute (epidual) laye of the spinal cod to block any painful sensations fom the point of insetion to the lowe extemities. Eythocytes See ed blood cells. Filgastim See colony stimulating facto. Geneal Anesthesia A fom of anesthesia that causes tempoay patial o complete loss of sensation. Bone maow havests ae most commonly pefomed using geneal anesthesia. Gaft failue A complication afte an allogeneic tansplant in which the dono stem cells do not gow in the ecipient s bone maow and fail to poduce new white blood cells, ed blood cells, and platelets.

6 Gaft Vesus Host Disease (GvHD) A condition whee tansplanted stem cells attack the patient s body. Gaft Vesus Leukemia Effect (also called Gaft Vesus Cance Effect) The phenomenon wheeby the dono cells mount an attack against the ecipient s undelying cance. Gowth Facto o Colony Stimulating Facto See colony stimulating facto. Haplotype -- When the dono is only a half match to the ecipient. These donos can be paents, siblings o childen. Havest See stem cell havest. Hematopoiesis The pocess of foming ed blood cells, white blood cells, and platelets. Hematopoietic Pogenito Cells Bloodfoming stem cells capable of poducing all the components of blood and maow. (abbeviated HPC s) Hemoglobin The pat of the ed blood cell that caies oxygen. Histocompatibility A system that detemines how closely the patient and dono blood stem cells match. HLA_- Human Leukocyte Antigen Poteins on white blood cells that make each peson s tissue unique. The HLA A, B, C, and DR poteins ae impotant in matching patients and donos fo a maow o blood stem cell tansplant. HLA Match When both ecipient and dono have had DNA-based HLA typing pefomed and shae the same human leukocyte antigen esults. HLA typing The identification of a peson s key antigens used fo detemining compatible donos. Hodgkin s Disease A cance found in the lymph tissue. HPC collection The pocess of collecting stem cells fom the ciculating bloodsteam. Human T-Cell Lymphotophic Vius (HTLV) A ae vius tansmitted by cellula components of blood. Two foms of the vius have been identified, HTLV-I and HTLV-II. Immune Compomised A condition in which the patient has a much highe isk of infection due to a weak immune system. Immune System The goup of ogans and cells in the body that fight infection and othe diseases. Infectious Disease Makes Elements in a peson s blood that indicate if a peson has been exposed to cetain viuses. Infomed Consent The pocess by which a peson eceives an explanation of the isks and benefits of a medical teatment o eseach study, agees to paticipate, and indicates in witing that he o she undestands and agees to the infomation povided. A peson can povide infomed consent at age 18. Definition of Tems

7 Infusion The intoduction of medicines, fluids, chemotheapy, o blood poducts into a vein. Sometimes efeed to as an intavenous infusion. Leukemia A goup of cances that involve the white blood cells. Leukemias can be acute (fast gowing) o chonic (slow gowing). Leukocytes See white blood cells. Lymphocytes A type of white blood cell that is pat of the immune system that helps potect the body fom invading oganisms. T-cells ae a kind of lymphocyte that ae involved in gaft vesus host disease. Lymphoma A cance of the lymph tissue. Included in this disease categoy ae Hodgkin s disease and non-hodgkin s lymphoma Malignant Canceous. Maow See bone maow. Maow donation A sugical pocedue by which a peson donates a potion of thei bone maow fo a patient who needs a bone maow tansplant. Metastasis The spead of cance fom one pat of the body to anothe. Mini Bone Maow Tansplant (Non-Myeloablative Allogeneic BMT) A bone maow tansplant duing which lowe doses of chemotheapy and adiation ae used to pepae a patient fo tansplant. It elies on the dono s immune system to kill the disease. Minitansplants equie an HLA matched dono. (Reduced Intensity BMT) Mobilization A pocess involving the movement of stem cells fom the bone maow into the bloodsteam though chemotheapy and/o gowth facto injections. Also called piming. Molecula HLA Typing See DNA-based HLA typing. Monoclonal Antibodies A fom of teatment that only destoys a cetain type of cell that is involved in cance. Multiple myeloma A cance of the plasma cells in the blood. Myelodysplastic Syndome o Disode (Myelodysplasia) A disease of the bone maow in which too few platelets, ed blood cells, and white blood cells ae made. Also called pe-leukemia o smoldeing leukemia. Myelofibosis A disease that causes sca tissue to fom in the bone maow. As a esult of the sca tissue, nomal blood cell poduction is blocked. Nomal blood cell poduction then moves to the spleen, which then becomes enlaged. Anemia esults because blood poduction in the spleen does not wok as well as in the bone maow. Myelopolifeative Disodes A goup of disodes caused by inceased poduction of blood cells by the bone maow. The 4 types of myelopolifeative disodes ae: polycythemia vea, when too many ed blood cells ae fomed; chonic myelomonocytic leukemia, when too many white blood cells ae fomed; pimay thombocythemia, when too many platelets ae fomed; and myelofibosis, a disease that causes sca tissue to fom in the bone maow National Maow Dono Pogam (NMDP) The oganization selected to manage the egisty of voluntee unelated bone maow donos in the United States. Neutophil The type of white blood cell that is the fist line of defense against infection. Non-Hodgkin s Lymphoma A cance that is found in the lymph tissue. Non-Myeloablative Tansplant See mini bone maow tansplant. Peipheal Blood Stem Cells (PBSC) Cells found in the ciculating bloodsteam that have not become specialized. Peipheal Blood Stem Cell Tansplant See bone maow tansplant. Phlebotomy Withdawing blood fom a vein fo testing puposes. Plasma The liquid potion of unclotted blood that helps to eplace blood volume.

8 Platelets Blood cells that act as clotting agents to contol bleeding. Peliminay Seach The pocess by which a patient s HLA type is sent to the NMDP and enteed into the compute, whee it is compaed to the HLA types of all voluntees listed in the egisty at that time. The peliminay seach becomes fomal when specific donos ae equested fo futhe testing on behalf of the patient. Pepaative Regimen The chemotheapy and/o adiation that is given to patients befoe the maow o blood stem cell tansplant. Piming See mobilization. Pognosis The pedicted o likely outcome. Potocol A specifically designed teatment plan. Radiation Theapy Teatment to kill cance cells using high-enegy ays fom X- ays, electon beams, o adioactive isotopes. Recuitment Goup An oganization affiliated with the National Maow Dono Pogam that ecuits donos. Red Blood Cells Cells that cay oxygen to all pats of the body. Also known as eythocytes. Registy A confidential national database of potential voluntee bone maow/stem cell donos established and maintained by the National Maow Dono Pogam. Relapse The etun of the disease afte teatment. Remission Complete o patial disappeaance of cance cells and symptoms afte teatment. Staging Extensive testing done to detemine if a patient is a candidate fo a bone maow tansplant. Stem Cell Tansplant See bone maow tansplant. Syngeneic Bone Maow Tansplant A type of bone maow tansplant whee the dono is an identical twin. T-cells (T-lymphocytes) A type of white blood cells that identifies oganisms that do not belong in the body. The T-cells ae involved in gaft vesus host disease (GvHD). T-cell Depletion Removing T-cells fom the dono s stem cells to significantly educe the isk of developing seious GvHD. Thombocytopenia Low platelet count. Tissue Typing A seies of blood tests that evaluate the compatibility o closeness of tissue between the ogan dono and ecipient. Umbilical Cod Blood Stem Cell A stem cell fom the blood of the umbilical cod and placenta. (See also stem cell and cod blood.) Unelated Bone Maow Tansplant A type of tansplant whee the dono is not elated to the patient. Definition of Tems

9 Voluntee Dono Usually efes to an unelated bone maow dono who is an acceptable HLA match and who is willing to donate bone maow anonymously to a ecipient in need of a bone maow tansplant. Related bone maow donos also may be efeed to as voluntee donos. Notes White blood cells Cells that help fight infection and disease (leukocytes). Wokup See dono wokup. Index #10638 This infomation is not intended to eplace the medical advice of you docto o health cae povide. Please consult you health cae povide fo advice about a specific medical condition. Poduced by Cente fo Consume Health Infomation Copyight The Cleveland Clinic Foundation. All ights eseved. Rev

10 Welcome to the Blood & Maow Tansplant Pogam Welcome to the Blood & Maow Tansplant (BMT) Pogam. The BMT Team at Cleveland Clinic s Taussig Cance Institute is hee to help you egain you health. Lean about the tansplantation pocess We have designed an extensive teaching pogam to help you lean about the tansplantation pocess and you individual health needs, as well as you medical cae befoe and afte the tansplant. We know that leaning about the tansplantation pocess and how to cae fo you health might be ovewhelming at fist. But emembe, you can lean a little each day. You'll also have this notebook as a efeence duing you tansplant expeience. We undestand you ae both excited and nevous about you tansplant. These ae nomal eactions. Being pepaed in advance by leaning and undestanding what to expect will help ease you feas of the unknown. Always discuss you questions and expectations with you health cae povides. Be an active patne in you health cae Welcome We believe it is impotant fo you to be an active paticipant in you health cae. You will need to assume much esponsibility in you own cae by doing whateve is necessay to build and maintain you stength fo the tansplant. It is also impotant fo you to ecognize and epot any changes in the way you feel. No one knows how you feel except you. Patient ights Cleveland Clinic suppots the following patient ights: n Reasonable access to cae in a safe envionment, which will not be denied due to ace, ceed, colo, national oigin, sex, age, sexual oientation, disability, o souce of payment n Access to infomation about you diagnosis, condition, and teatment in tems you can undestand so you can paticipate in the decisions egading you cae

11 n Consideate cae that espects you pesonal value and belief systems n Paticipation in the consideation of ethical issues that aise in the povision of you cae n Pesonal pivacy and confidentiality of infomation n Designation of a epesentative decision make in the event you ae incapable of undestanding a poposed teatment o pocedue, o ae unable to communicate you wishes egading cae n Ability to efuse teatment to the extent pemitted by law and to be infomed of the possible consequences of you efusal and the ability to consent o efuse to paticipate in expeimental teatment o eseach n To know the names and pofessional titles of all you caegives (Cleveland Clinic is a teaching institution. Resident doctos, fellows and othe supevised health cae povides in taining might become involved in you cae and teatment.) n To be povided with infomation about you continuing health cae needs and planning fo cae afte you leave the hospital and, as appopiate, afte an appointment with you docto o othe caegive Patient esponsibilities You esponsibilities as a patient at Cleveland Clinic include: n Poviding accuate and complete infomation about all mattes petaining to you health, including medicines and past o pesent medical poblems n Notifying a membe of the health cae team if you do not undestand infomation about you cae and teatment n Repoting changes in you condition o symptoms, including pain, to a membe of the health cae team n Acting in a consideate and coopeative manne, and especting the ights and popety of othes n Following the ules and egulations of the health cae facility, as well as following the instuctions and advice of you health cae team n Keeping scheduled appointments o canceling them in advance if at all possible This infomation is not intended to eplace the medical advice of you docto o health cae povide. Please consult you health cae povide fo advice about a specific medical condition. Index #9546 Poduced by the Cente fo Consume Health Infomation Copyight The Cleveland Clinic Foundation. All ights eseved. Rev

12 Blood & Maow Tansplant Pogam Oveview Cleveland Clinic pefomed its fist bone maow tansplant in Since then, the Blood & Maow Tansplant (BMT) Team has pefomed moe than 3,000 tansplants. The Blood & Maow Tansplant Pogam offes state-of-the-at tansplantation in both autologous and allogeneic tansplants. We ae one of the wold s leading authoities on peipheal blood stem cell mobilization and tansplantation of autologous peipheal stem cells. We wee one of the founding membes of the National Maow Dono Pogam in the use of unelated donos fo allogeneic tansplants. The Blood & Maow Tansplant Pogam is accedited by The Foundation fo the Acceditation of Cellula Theapy (FACT), Ameican Association of Blood Banking, the National Maow Dono Pogam, the Ohio Bone Maow Consotium and Southwest Oncology Goup. Cleveland Clinic has designated facilities and suppot sevices available to assist patients and thei families thoughout the entie tansplant pocess. Tansplant patients at Cleveland Clinic eceive the highest-quality medical and nusing cae. Blood & Maow Tansplant Team offes compehensive cae The Blood & Maow Tansplant Team at Cleveland Clinic is specially tained in meeting the needs of tansplant patients. The team is committed to poviding compehensive cae in a compassionate setting. The BMT Team membes include: Tansplant doctos Physician assistants and Nuse Pactitiones Tansplant nuse coodinatos Infectious disease team Phamacologists Tansplant fellows and esidents Administative coodinatos Nuse manage and assistant nuse manage Registeed nuses Nusing assistants Administato Dietitians Social wokes Financial counselos Blood & Maow Tansplant Pogam Oveview Tansplant doctos BMT doctos ae staff doctos with extensive taining and expeience in hematology/oncology and blood o maow tansplant. The tansplant docto on sevice will be caing fo you duing you stay in the hospital and will check you

13 pogess daily. Since Cleveland Clinic is a teaching facility, the tansplant doctos otate caing fo inpatient tansplant ecipients. Theefoe, you tansplant docto might o might not be on sevice while you ae in the hospital, but will continue to be an active membe in the decision-making pocess. You tansplant docto continues to cae fo you health and follows you closely duing you follow-up visits. Physician assistants & nuse pactitiones Physician assistants and nuse pactitiones play an active ole in you teatment. The inpatient BMT unit is staffed with physician assistants who will follow you medical cae, along with the tansplant docto. A physician assistant o Nuse Pactitione and the staff docto will pefom physical exams, eview teatment, and follow laboatoy and X-ay esults on a daily basis. Tansplant coodinatos The tansplant coodinato is a egisteed nuse who helps coodinate all the events leading up to and following you tansplant. He o she teaches you how to pepae fo you tansplant and will find you a suitable blood o maow dono should you equie one. Along with othe membes of the Tansplant Team, you tansplant coodinato teaches you how to take cae of youself afte tansplantation in ode to maintain you health. Afte you ae dischaged fom the hospital, you tansplant coodinato will continue to be diectly involved in all aspects of you cae. Infectious disease team This team of doctos is specially tained in infectious disease and how it elates to the tansplant pocess. Befoe you tansplant, you will have multiple tests to detect any signs of infection. Once you ae admitted to the hospital, the infectious disease doctos will ound evey day with the est of the BMT Team. They will help contol you envionment to potect you against hamful souces of infection. Befoe appoaching you, visitos and othes will be asked to wash thei hands with antimicobial soap o instant hand sanitizing foam located outside and inside each oom. In addition, you tempeatue will be taken evey 4 hous to detect ealy signs of infection. Tansplant fellows Tansplant fellows ae doctos who ae taining to become specialists in hematology and oncology. They wok unde the guidance of you staff tansplant docto and will visit you daily along with you tansplant docto and the est of the BMT Team. Phamacologists Along with you tansplant docto, you phamacologist will make adjustments in you medicine dosage as needed. The phamacologist might assist you nuses and tansplant coodinato in teaching you about you tansplant medicines. Administative coodinatos You administative coodinato will make sue all of you appointments ae scheduled befoe and afte you tansplant. He o she will wok closely with you efeing docto to make sue all necessay medical ecods ae available. The coodinato also stays in close contact with you insuance company fo medical eview and appoval of you teatment plan. Nuse manage and assistant nuse manage The nuse manage and assistant nuse manage ae esponsible fo the oveall daily management while you ae on the BMT Unit (G110) o the Leukemia Unit (G111). The nuse manage and the assistant nuse manage wok with the egisteed nuses and nusing assistants on all nusing units to assue you ae eceiving the best cae. If you have any questions o concens about the condition of you oom o the nusing cae you ae eceiving, you may ask to speak with eithe the nuse manage o assistant nuse manage. Registeed nuses Registeed nuses povide you with individual cae duing you outpatient appointments at the Taussig Cance Institute and 24-hous-a-day while you ae hospitalized. Registeed nuses wok

14 togethe with you docto and the est of the BMT Team to plan you daily cae. In the hospital, egisteed nuses also: Check you pogess at fequent intevals thoughout the day and night Administe you medicines Tell you docto of any changes in you condition Educate you and you family about the medicines you will be taking Teach you how to cae fo you health afte tansplantation Pepae you fo you dischage Nusing assistants Nusing assistants wok with the egisteed nuses to povide you daily cae. They might take you tempeatue, blood pessue, and daily weight. They also assist with you pesonal cae and help make you comfotable duing you hospital stay. Administato The BMT administato ovesees the daily opeations of the Blood & Maow Tansplant Pogam to ensue maximum opeating efficiency while ensuing quality cae of all patients. The administato manages the nusing, engineeing, eseach, technical, laboatoy, financial, social wok, and cleical pesonnel within the BMT Pogam. Dietitians Registeed dietitians (nutition expets) ae available to help you maintain good nutition duing you tansplant ecovey. They wok closely with you and you docto to povide individualized nutitional counseling. They ae available to answe any nutition questions you might have. Social wokes A social woke will be assigned to you and you family and will discuss any concens you might have about you tansplant o you pesonal situation. You social woke will be a pimay souce of suppot duing the tansplant pocess. Social wokes povide education, counseling egading lifestyle changes and coping with teatment demands, efeals to community o national agencies and suppot goups, help with local lodging needs, and any othe assistance you o you family might need. Financial counselos You financial counselo can answe any questions you might have about insuance coveage and benefits elated to you tansplant and cae. They will help obtain insuance appoval fo you tansplant. Tansplant patients will be scheduled to meet with the financial counselo pio to thei tansplant. Some tansplant patients might be eligible fo cetain govenment pogams, depending on thei individual financial situation. Othe BMT tansplant team membes A chaplain is available to povide spiitual guidance o counseling fo all faiths. Thee ae many othe pofessionals such as a music theapist, physical theapists, and espiatoy theapists, laboatoy Blood & Maow Tansplant Pogam Oveview

15 technicians, and suppot staff who wok as membes of the BMT Team to meet you medical and pesonal needs. Special cae fo pediatic patients Pediatic patients eceiving a blood o maow tansplant ae admitted to the Childen's Hospital at Cleveland Clinic. Thee, they ae unde the cae of specialists, nuses, social wokes, child-life wokes, and othe health cae pofessionals who ae tained to meet the unique needs of childen and thei families. The Childen's Hospital povides state-of-the-at cae in a home-like setting. Because the family is an impotant pat of a hospitalized child s ecovey, the hospital ooms ae designed to enable a paent to spend the night in the oom with his o he child. Notes Index #3984 This infomation is not intended to eplace the medical advice of you docto o health cae povide. Please consult you health cae povide fo advice about a specific medical condition. Poduced by the Cente fo Consume Health Infomation Copyight The Cleveland Clinic Foundation. All ights eseved. Rev. 05/01/2014

16 Bone Maow and Tansplantation How the bone maow functions Bone maow is the soft, spongy cente of you bone whee blood is poduced. Maow is filled with blood-poducing cells, called hematopoietic pogenito cells (HPCs), which develop into matue white blood cells, ed blood cells, o platelets. White blood cells of vaious kinds make up pat of you immune system fo fighting infections. Red blood cells ae esponsible fo caying oxygen thoughout you body. Platelets clot you blood to pevent bleeding. HPCs ae constantly being poduced by you bone maow, and will develop into the types of cells you body needs. HPCs ae sometimes called stem cells. Types of blood o maow tansplants ed blood cell platelets white blood cells Most people who need to undego a blood o maow tansplant have cance, such as leukemia, lymphoma o multiple myeloma. Thee ae diffeent types of tansplants. The type and seveity of you disease detemine what type of tansplant you will need. An allogeneic tansplant involves eceiving dono bone maow, umbilical cod stem cells o peipheal blood stem cells. This dono is genetically matched and can be elated o unelated to you. Bone Maow and Tansplantation An autologous tansplant involves eceiving you own bone maow o peipheal stem cells. A syngeneic tansplant involves eceiving you identical twin's bone maow o peipheal blood stem cells. Hee is moe infomation about the specific types of blood o maow tansplants:

17 An allogeneic tansplant involves eceiving vey high-doses of chemotheapy and/o adiation theapy, followed by the infusion of you dono's bone maow o peipheal blood stem cells. The high-dose cancefighting teatments ae given to eliminate The infusion of the new maow, cod blood o peipheal stem cells fom the dono eplaces the bone maow destoyed by the chemotheapy and/o adiation theapy. Allogeneic tansplant patients have the isk of developing a complication called gaft-vesushost disease o GvHD. GvHD is a condition whee dono cells fom the gaft attack the patient s (o host s) ogans o tissues The condition can be mild and teated on an outpatient basis, o it can be sevee and equie teatment in the hospital. You might be a potential candidate fo an allogeneic tansplant if you have leukemia, aplastic anemia, myelodysplasia, myelofibosis, high-gade lymphoma o othe types of cances. A Reduced Intensity allogeneic tansplant involves eceiving lowe doses of chemotheapy and adiation theapy followed by the infusion of you dono's bone maow o peipheal blood stem cells. The objective is to suppess you own bone maow by eceiving just enough chemotheapy and adiation theapy to allow you dono cells to engaft and gow within you. The hope is these dono cells will mount an immunologic attack against you undelying cance, geneating a esponse called the gaft-vesusleukemia effect o gaft-vesus-cance effect. You might be a potential candidate fo this type of tansplant if you have a slow-gowing, indolent disode, such as chonic leukemia, multiple myeloma, myelodysplasia, and low-gade lymphoma. An autologous tansplant involves eceiving vey high-dose chemotheapy followed by the infusion of you peviously-collected peipheal blood stem cells o bone maow. The high-dose chemotheapy teatments ae given to eliminate the cance in you body. The infusion of you new maow o peipheal stem cells eplaces the bone maow destoyed by the chemotheapy and/o adiation theapy. You might be a potential candidate fo an autologous tansplant if you have lymphoma, multiple myeloma, Hodgkin's disease, gem cell cance, o cetain types of leukemia. Pe-tansplant evaluation Befoe a blood o maow tansplant can be appoved as a teatment option, you will have a pe-tansplant evaluation. This evaluation includes a complete physical, consultations with membes of the Tansplant Team, and a compehensive seies of tests. A pe-tansplant evaluation povides complete infomation about you oveall health and helps detemine if you ae eligible fo a blood o maow tansplant. Blood o maow tansplantation as a teatment option Afte you tansplant docto has detemined you ae a good candidate fo a tansplant, a date fo the tansplant will be detemined and the pocess of insuance cleaance will begin. Please undestand that insuance eimbusement fo tansplantation is not automatic. If you ae to be admitted to the hospital fo you tansplant, you can expect you stay to be about 3 to 4 weeks, depending on you ecovey. Duing you ecovey, you will lean about you new medicines, how to ecognize signs of complications and infections, and when you can etun to you nomal activities. If an allogeneic tansplant o inpatient educed intensity tansplant has been appoved fo you, you and you designated cae-patne might be equied to stay within a 1-hou dive of

18 Cleveland Clinic s main campus fo appoximately 100 days afte you tansplant. Afte you go home, you can expect to ecove gadually, usually ove 3 to 6 months. If an outpatient educed intensity allogeneic tansplant has been appoved fo you, you will be equied to stay within a one-hou dive of Cleveland Clinic s main campus fo at least 100 days afte you tansplant. At that time, you docto will evaluate you medical condition to detemine whee you can continue you follow-up cae. Follow-up cae afte you tansplant includes appointments with you tansplant o local docto and tests to assess how you ae ecoveing. Notes Bone Maow and Tansplantation

19 Notes This infomation is not intended to eplace the medical advice of you docto o health cae povide. Please consult you health cae povide fo advice about a specific medical condition. Index #4752 Poduced by the Cente fo Consume Health Infomation Copyight The Cleveland Clinic Foundation. All ights eseved. Rev.10/15/2014

20 Impotant Cleveland Clinic Phone Numbes Admitting (Patient Registation) Ambassados (Voluntee Sevices) Ameican Cance Society ACS.2345 Apheesis BMT Laboatoy BMT Administation Office Cance Answe Line/R-2 Libay o Cance Infomation Sevice CANCER Cashie Conciege Sevices Cleveland Clinic Infomation o Diections to the Cleveland Clinic Emegency Assistance (Fie, Secuity) Financial Ombudsman Food Sevices, Patient (Menu Hotline) Food Sevices, Retail Geneal Counsel (Legal Affais) Joseph Beth Gift Shop Health Infomation Libay Heaing Impaied Intepete Refeal Cleveland Clinic Home Cae HOME o Impotant Cleveland Clinic Phone Numbes Hope Lodge

21 Hospice of the Cleveland Clinic Infection Contol Intenational Cente Laboatoy (R21) Leukemia & Lymphoma Society Lost and Found Nuse on Call Nutition Hotline Nutition Theapy Appointments Ombudsman Patient Helpline (24 hous a day) Patient Shuttle Bus Poison Contol Cente (Geate Cleveland Aea) Police/Secuity Paye Line Phamacy (Outpatient -Euclid Ave Lobby of Paking #1) Phamacy (Taussig Cance Cente) Reflections Wellness Pogam Social Wok Spiitual Cae Telegam/Telex Sevice Tansplant Housing TV Sevice Vehicle Assistance Index # 9609 This infomation is not intended to eplace the medical advice of you docto o health cae povide. Please consult you health cae povide fo advice about a specific medical condition. Poduced by Cente fo Consume Health Infomation Copyight The Cleveland Clinic Foundation. All ights eseved. Rev. 12/12/13

22 Pe-Tansplant Evaluation Requied Tests & Appointments Pe-Tansplant Evaluation You tansplantation pocess began with an initial consult with you tansplant docto. You and you docto have detemined that a tansplant is the ight teatment fo you. The next step in the pocess is you pe-tansplant evaluation. What is a pe-tansplant evaluation? You pe-tansplant evaluation includes a vaiety of medical tests and appointments that will povide complete infomation about you oveall health. These medical tests and appointments help the BMT team identify any potential poblems befoe you tansplant and avoid any potential complications duing and afte you tansplant. These tests ae also equied by you insuance company in ode to appove the medical necessity of you tansplant. About 4-6 weeks befoe you tansplant, you will be scheduled fo you pe-tansplant evaluation. While each patient may not have the same tests, most of the tests listed in this section ae common fo all tansplant patients. The testing equied fo you tansplant is usually done ove a few days as an outpatient, at the Cleveland Clinic. You nuse and administative coodinatos will help aange the testing fo you. If you have an allegy to the contast dye used fo CT scans, o have been told that you need to be pemedicated befoe CT scans, please notify you nuse coodinato. You will need a pesciption sent to you phamacy befoe you scheduled test date. If you have had a PET scan, CT scan, o skeletal suvey done within 6-9 months pio to you pe-tansplant evaluation, please bing a copy of the films o CD along with the epot, to you pe-tansplant evaluation appointments. The adiologist will use them as a compaison when eading you pe-tansplant evaluation scans. If special instuctions ae equied befoe any of these tests, you will eceive witten instuctions that explain how to pepae. Afte the tests ae completed, you tansplant docto will eview the esults with you. Pe-Tansplant Evaluation Requied Tests & Appointments

23 Requied Tests and Appointments You pe-tansplant evaluation will be scheduled at Cleveland Clinic, usually ove a few days. In additon to you equied medical tests, you will also be scheduled to meet with membes of the BMT team. The next few pages will povide infomation about the testing and appointments that you will be scheduled fo as pat of you petansplant evaluation. Meeting with the tansplant team As pat of you evaluation fo tansplant, you will meet with a nuse coodinato, social woke and financial counselo to lean moe about the BMT pocess. Nuse coodinato-- You nuse coodinato will meet with you to eview the calenda of events elated to tansplant, including the chemotheapy, with o without adiation, and infomed consents. This appointment usually lasts about 2 hous. The nuse coodinato will discuss potential side effects of chemotheapy /adiation and what you can expect duing you BMT expeience. Social woke- You social woke will complete a thoough psychosocial assessment, which helps to identify the needs and concens of patients, families, and significant othes. All patients will have an in-peson assessment with the social woke that usually lasts about 1-1/2 hous. You cae-patne(s) should attend this appointment with you. Most insuance companies equie an assessment by a social woke to be completed pio to appoval of you BMT. All patients ae asked to complete the enclosed social woke questionnaie and etun it in the envelope povided. If you ae eceiving a tansplant fom a dono (allogeneic o educed intensity), you and you cae-patne will be equied to stay in the Cleveland Metopolitan aea, within a 1 hou dive of the Cleveland Clinic Main Campus. Most autologous tansplant patients (patients eceiving thei own stem cells), will be equied to stay within 1 hou of Cleveland Clinic Main Campus duing the stem cell collection peiod, which can be up to 3 weeks. In some cases, autologous stem cell patients may also be equied to stay within 1 hou of Cleveland Clinic afte being dischaged. You social woke can help identify local housing options and povide assistance with othe concens that you may have. Radiation oncologist If you equie adiation as pat of you pepaative egimen, you will meet with a adiation oncologist. The adiation oncologist will assess you histoy of pevious adiation exposue to ensue you ae able to eceive adiation fo tansplant. He o she will also explain possible side effects that can be caused by adiation, as well as how adiation is given. Financial counselo All tansplant patients will meet with a financial counselo who can eview insuance coveage fo peand post-tansplant expenses. Dentist All allogeneic tansplant patients equie a dental assessment as pat of you pe-tansplant sceening to ensue that you mouth is fee of potential infection. Autologous tansplant patients may be equied to have a dental assessment. This will be detemined by you insuance company and/o you tansplant physician. Check with you nuse coodinato if you ae unsue. A dental assessment may be scheduled at you pesonal dentist s office o at Cleveland Clinic. If the assessment is done at you local dentist s office, please ask the dentist to fax a lette stating that you mouth is fee fom any souce of potential infection.

24 The lette needs to be faxed to the BMT office at Fax: o hand deliveed pio to you tansplant. (Feel fee to use the handout Instuctions fo You Dentist as a guide.) If dental wok is equied befoe the stat of you pepaative egimen, please notify you nuse coodinato to detemine if peventive antibiotic theapy is needed befoe the dental wok is pefomed. If you would like a dental assessment to be scheduled at Cleveland Clinic, please notify you nuse coodinato and veify that you insuance will cove a dental consult at Cleveland Clinic. Medical insuance does not typically cove dental cleaance. Blood tests You health cae povide o a technician will take a sample of blood fom you am o cental venous cathete (if one is in place). The blood is sent to a lab whee the following tests ae pefomed: Tissue typing (needed fo allogeneic patients only) This was done at o befoe you initial consultation appointment with you BMT docto. Tissue typing is a seies of blood tests that evaluate the compatibility o closeness of tissue between the dono and ecipient. Fom you blood samples, the tissue typing lab can identify and compae infomation about you antigens (the makes in cells that stimulate antibody poduction) so they can match a bone maow o peipheal blood stem cell dono to you. All donos ae caefully sceened to pevent any tansmissible diseases o detect othe medical poblems that might pevent them fom donating bone maow o peipheal blood stem cells. Othe blood tests In the laboatoy, a seies of tests will be pefomed to detect cetain substances in you blood and to evaluate you geneal health. These blood tests might include: Infectious Disease Sceening fo : Hepatitis HIV (human immunodeficiency vius) RPR (syphilis) Toxoplasmosis Vaicella Zoste CMV (cytomegalovius) EBV (Epstein-Ba vius) HSV (Hepes Simplex vius) West Nile Vius HTLV1/11 (Human T-Cell lymphotopic vius) Chagas Blood Wok to Check you Ogan Function Feitin Complete Metabolic Panel Hemoglobin Solubility ABO blood type Bleeding times CBC, diff, platelets Quantitative immunoglobulins Othe Possible Blood Wok Disease-specific labs fo multiple myeloma, including a 24-hou uine Pegnancy test Reseach samples Pe-Tansplant Evaluation Requied Tests & Appointments

25 Heat and lung Tests Because of the pio chemotheapy and/o adiation theapy that you may have eceived, and the chemotheapy and/o adiation that you will eceive fo you tansplant may affect you heat and lungs, you will need heat and lung tests to identify and teat any potential poblems befoe you tansplant pocedue. The heat tests include: Electocadiogam (EKG) An EKG is used to evaluate you heat hythm. Befoe the test, electodes (small, flat, sticky patches) ae placed on you chest. The electodes ae attached to an electocadiogaph monito that chats you heat s electical activity (heat hythm). Echocadiogam An echocadiogam is a gaphic outline of you heat s movement. Duing the test, a wand, o tansduce, is placed on you chest. The tansduce emits ultasound (high-fequency sound wave) vibations so the docto can see the outline of the heat s movement. The echocadiogam povides pictues of the heat s valves and chambes so the pumping action of the heat can be evaluated. Echocadiogam is often combined with Dopple ultasound to evaluate blood flow acoss the heat s valves. The Lung tests include: Chest X-ay A chest X-ay povides a pictue of you heat and lungs. This X-ay povides infomation about the size of you heat and lungs, and might detect the pesence of lung disease o infection. Pulmonay function tests (PFTs, lung tests) Pulmonay function tests measue the capacity and function of you lungs, as well as you blood s ability to cay oxygen. Duing the tests, you will be asked to beathe into a device called a spiomete. Hee ae some guidelines to follow befoe you scheduled pulmonay function tests: Be sue to get plenty of sleep the night befoe. Plan to wea loose clothing duing the test so you can give you geatest beathing effot. Limit you liquids and eat a light meal befoe the test. Dinking o eating too much befoe the test might make you feel bloated and unable to beathe deeply. Radiology Tests Depending on the type of disease you have, you may be scheduled fo adiology tests. You tansplant physician may equest a Compute Tomogaphy scan (CT scan), a Positon emission tomogaphy (PET) scan, o a combination PET/CT scan. Patients with Multiple Myeloma may be equied to have a skeletal suvey. Computed tomogaphy scan (CT Scan) A CT scan, uses X-ays and computes to poduce a detailed image of the body. Depending on the type of scan you need, an oal and/o IV contast mateial might be used so the adiologist can see the extent of you disease. CT scans also might eveal the pesence of othe abnomalities. If you had a CT scan within 6 months befoe you pe-tansplant evaluation, bing the CT scan films o disc, along with a copy of the epot with you. The adiologist will use them as compaison when eading these new scans.

26 Depending on you illness, you docto might ode additional CT scans. Positon emission tomogaphy (PET) scan A PET scan is a unique type of imaging test that helps doctos see how the ogans and tissues inside you body ae actually functioning. The test involves injecting a vey small dose of adioactive chemical, called a adiotace, into a vein. The tace tavels though the body and is absobed by the ogans and tissues being studied. Next, you will be asked to lie down on a flat examination table that is moved into the cente of a PET scanne -- a doughnut-like shaped machine. This machine detects and ecods the enegy given off by the tace substance. The PET scan can measue such vital function as glucose metabolism, which helps doctos identify abnomal fom nomal functioning ogans and tissues. One of the main diffeences between PET scans and othe imaging tests like CT scan o magnetic esonance imaging (MRI) is that the PET scan eveals the cellula level metabolism changes occuing in an ogan o tissue, o the activity of cells. Depending on you illness, you docto may ode a PET scan. Bone maow biopsy-- A bone maow biopsy is a pocedue to collect and examine bone maow-- the spongy tissue inside some of you lage bones. Bone maow biopsy can show whethe you bone maow is healthy and making nomal amounts of blood cells, as well as monito fo abnomal cells. The aea of you back hip bone will be numbed with a local anesthetic o pain elieving medication, befoe the needle is inseted to emove the sample of you bone maow. You might be given oal medicine, pio to the pocedue to help you elax. You should plan to have a dive take you home afte this pocedue since the medication can make you dowsy. Additional Tests Some insuance companies equie additional testing as pat of you petansplant evaluation. These may include: a colonoscopy, mammogam, dental exam, o gynecology exam. You nuse coodinato will let you know if these tests ae equied. Afte you BMT physician eviews you evaluation testing, additional appointments o consulations may be necessay. You nuse and administative coodinato will assist you in scheduling these appointments at Cleveland Clinic. Afte my pe-tansplant evaluation At the end of you pe-tansplant evaluation and afte the test esults ae complete, the BMT docto will decide whethe o not a tansplant is the appopiate teatment fo you. You test esults will also be sent to you insuance company fo the insuance appoval pocess. Usually the insuance company will make a detemination in 7 to 10 days afte eceiving the test esults. Pe-Tansplant Evaluation Requied Tests & Appointments