A Guide to Bone Marrow & Stem Cell Donation What you need to know about providing a patient with a second chance at life
WHY WE NEED BONE MARROW DONORS Blood cancer is the third leading cause of cancer deaths & kills more children than any other disease in the U.S. A bone marrow transplant can be a life-saving treatment for blood cancers like leukemia and approximately 70 other diseases, including aplastic anemia and sickle cell disease.
DELETEBLOODCANCER.ORG
Dear Friend, When you registered as a bone marrow donor, you provided so many patients with hope. Now you have the potential to provide one with a second chance at life. Delete Blood Cancer DKMS started with my family’s search to find a bone marrow donor for my mother. It was 1990 and there were only 3,000 registered donors in our native Germany. With the odds of finding a match starting at one in 20,000, the situation seemed hopeless. But my father was determined to make the impossible possible. Together with family, friends and volunteers, he registered 68,000 potential donors in just one year. Sadly, however, my mother lost her hard-fought battle when I was only fourteen. My mother’s death motivated me to do everything I could to prevent other families from suffering the loss that we did. In 2004, I joined my father to start Delete Blood Cancer in the U.S. As you know, we register new potential donors to save more lives. As you’re about to find out, we also provide those who become donors with the best possible support and care. In the coming weeks, you’ll get to know many of us by name as we guide you through your life-saving journey. We will do all we can to make it a positive and powerful experience that leaves you feeling like the lifesaver you truly are. With gratitude and appreciation, Katharina Harf Co-Founder Delete Blood Cancer DKMS
“The thing that struck me most about the whole process was that, literally hours after the donation completed, the thing I wanted most in the world was to have a chance to do it again.� —Anne, donor
CONTENTS YOU ARE A MATCH
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NEXT STEPS
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THE TWO WAYS TO DONATE
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1. PERIPHERAL BLOOD STEM CELL (PBSC) COLLECTION 2. BONE MARROW DONATION
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PREPARING FOR DONATION
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AFTER DONATION
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WHY A PATIENT NEEDS YOU
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FREQUENTLY ASKED QUESTIONS
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THE DONATION JOURNEY
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THINK IT OVER, TALK IT OVER
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SE H A B L A ESPA Ñ O L
Download a PDF of this guide: deletebloodcancer.org/donors
“Donating feels good. This is actually helping somebody out there who needs it. Somebody who’s dying. It’s a very important thing to do.” —Evander, donor
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YOU ARE A MATCH Less than 1% of all registered donors ever become a match. You are now part of that small group. That’s why we are reaching out to you now. A doctor treating a patient in need of a stem cell or bone marrow transplant has determined that you are potentially a good match for the patient and would like to test you further to see if you are medically fit to donate. This may be exciting news for you. It might make you a bit nervous, too. That’s OK. Delete Blood Cancer is here to support you in every way as you consider the opportunity to donate. This booklet provides you with detailed information on next steps, as well as the two methods of donation:
1. Peripheral blood stem cell (PBSC) collection 2. Bone marrow donation
HOW YOU WERE SELECTED It all started the day you registered and swabbed your cheeks. The cells you collected were sent to a lab to determine your HLA (human leukocyte antigen) type. HLA are protein markers on your cells that aid your immune system to identify cells that do or don’t belong in your body. Once we determined your HLA type, we listed it anonymously on the national registry. We contacted you because a doctor has found that your HLA closely matches that of a patient who needs a bone marrow transplant. A close match means a better transplant outcome for the patient.
YOU ARE A MATCH
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NEXT STEPS Contact us. One of our coordinators is ready to take you through the next steps and answer any questions you may have. That person will be a great sounding board as you consider moving forward with donation, and an expert at guiding you through the process. You’ll find the contact information for your coordinator on the letter and forms that came with this booklet. Complete and submit the enclosed health history questionnaire and consent form. Your completed forms will help us determine if donation is safe for you and give us permission to conduct further testing. Please be as detailed in your answers as possible. Your health is our priority! Talk to friends and family. Donating is a serious commitment. It’s important to reach out to the people you trust the most to talk through your decision to donate and what it means for you physically and emotionally. Moving forward is entirely up to you. We do ask that you be 100% committed to donation prior to providing a blood sample. (See “Think it Over, Talk it Over” on page 30) Provide a blood sample. This will be analyzed to confirm that you are the best match for the patient, and screened for infectious diseases. We’ll schedule the appointment at a local lab. There is no cost to you and all results are strictly confidential. If you are confirmed as a match, you’ll likely be asked to donate. If you are not, you will stay on the registry and be available to other searching patients.
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NEXT STEPS
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THE TWO WAYS TO DONATE
Peripheral Blood Stem Cell (PBSC) Collection PBSC collection is a procedure similar to donating platelets. Your blood is drawn from one arm into an apheresis machine that separates out the blood stem cells before returning the rest of your blood back to your body through the other arm. PBSC collection is the donation method of choice 75% of the time. SCHEDULING PBSC collection is performed on a weekday (generally Monday-Thursday) at one of our accredited partner hospitals. The procedure generally lasts one day (6-8 hours), but can sometimes be done over two days (3-4 hours each day). Donors generally do not stay overnight in the hospital.
THE TWO WAYS TO DONATE > PBSC COLLECTION
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THE PROCESS BEFORE • Starting four days before your procedure, you’ll receive once-daily injections of filgrastim, a synthetic protein, to stimulate the release of stem cells from your marrow into your bloodstream. • The first injection happens in a clinical setting convenient to your home, office or school. The second through fourth injections are administered by a nurse in your home or office, and the fifth is given in the hospital the morning of donation. DURING • You’ll be seated in a reclining chair or adjustable bed. • A sterile needle will be placed into a vein in each of your arms. • Blood is drawn through one vein, passed through the apheresis machine, and then returned to you through your other arm. • The machine collects stem cells, platelets, and some white blood cells. • All of the tubing used with the machine is sterile and used only once for your donation. AFTER • You’ll be observed for a short time until you are physically stable and ready to go home. • We will follow up with you two days after your donation and regularly thereafter, to assure you are recovering well.
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THE TWO WAYS TO DONATE > PBSC COLLECTION > THE PROCESS
COMMON SIDE EFFECTS Nearly every donor experiences some side effects, but most do not experience all of them. FILGRASTIM • Headaches • Bone or muscle aches • Nausea • Fatigue PBSC • Bruising at needle sites • Numbness or tingling • Chills • Lightheadedness • Nausea • Decrease in platelet count RECOVERY • The side effects of filgrastim generally disappear within 48 hours of donating. • Most donors return to work, school and most other activities within two days of donating. • Allow more recovery time if your regular activities include physical labor or contact sports. • Alert family, friends and coworkers that you might need to alter routines for a bit, i.e. shorter workdays or less intense activities. • Your stem cells will completely replenish themselves within three to six weeks.
THE TWO WAYS TO DONATE > PBSC COLLECTION > COMMON SIDE EFFECTS
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W H AT D I D YO U D O W H I L E D O N AT I N G ? ORDINARY ACTIONS. E X T R A O R D I N A R Y O U T CO M E S . R e l a x i n g , wa tch i n g TV, cha t t i n g – t h e s e a r e j u s t a f e w o f t h e o r d i na r y t h i n g s y o u ca n d o d u r i n g t h e P B S C d o na t i o n p r o ce ss . B u t yo u ’ r e a l s o d o i n g s o m e t h i n g e x t ra o r d i na r y - - g i vi n g s o m e o n e a s e co n d cha n ce a t l i f e . HERE’S HOW RECENT DONORS PASSED THE TIME: “ I t o o k a s e l f i e ! W a t c h e d m ov i e s , t a l ke d t o m y w i f e a n d t h e n u r s e s . I t w a s a f a n t a s t i c e x p e r i e n ce t h a t c h a n g ed my l i f e . ” “ I l i st e n ed t o m u s i c a n d w a t c h e d T V. M o s t s e l f l e s s t h i n g I ’ v e e v e r d o n e . I t ’ s a n o b ra i n e r to be a donor!” “ I w a t c h ed f u n n y m ov i e s a n d l a u g h e d w i t h t h e n u r s e s . I ’ d d o i t ov e r a n d ov e r a g a i n . G e t sw a bb ed p e o p l e ! ”
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“ L i st e n ed t o m u s i c a n d c h a t t e d w i t h my w i f e . S t a f f w a s g re a t a n d m a d e s u re I w a s v e r y co m f o r t a b l e . ” “ D o n a t ed t w i ce t o t h e s a m e p e r s o n . C h i l l e d o u t , w a t c h ed TV, c h a t t e d w i t h t h e a w e s o m e n u r s e s . ” “ Wa t c h ed s p o r t s t a l k o n T V a n d re a d . H a d a n i ce l u n c h . Ch a t t e d w i t h m y w i f e a n d n u r s e s . ” “I sat with my husband watching game shows and cartoons. It took about 5 hours, easy as pie.” “ Wa t c h i n g T V m o st l y. I h a d m y g o d m o t h e r f o r co m p a ny, a n d t h e s t a f f w a s f u n , w h i c h m a d e t h e d o n a t i o n p ro ce s s a b re e z e . 6 h o u r s l a t e r, and it was done.” “ I w a s c ra c k i n g j o ke s w i t h t h e w o n d e r f u l n u r s e s f o r t h e f i r st 4 h o u r s . I h o p e I h a v e t h e o p p o r t u n i t y to donate again. Thank you for that life-altering e x p e r i e n ce , D e l e t e B l o o d Ca n ce r ! ” “ I h a d t o g o t w o d ay s i n a ro w a n d w a t c h e d m o v i e s o r c h a t t ed w i t h f a m i l y m o s t o f t h e t i m e . Wo u l d h a p p i l y d o i t a g a i n . ”
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“My mother, stepfather and my older brother all stopped by the donor room while I was hooked up to the machine. We ate, watched a baseball game. It was great to have them there.” —Mark, PBSC donor
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THE TWO WAYS TO DONATE > PBSC COLLECTION
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THE TWO WAYS TO DONATE
Bone Marrow Donation
Bone marrow donation is an outpatient surgical procedure performed under anesthesia. Doctors use special syringes to remove liquid marrow, which contains blood stem cells, from inside of your pelvic bone. This method is used less often, for specific diagnoses including pediatric cancers and certain forms of anemia. SCHEDULING Bone marrow donation is performed on a weekday (generally Monday-Thursday) at one of our accredited partner hospitals. The procedure lasts about one to two hours. Most donors are discharged the same day.
THE TWO WAYS TO DONATE > BONE MARROW DONATION
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THE PROCESS BEFORE • Once you arrive at the hospital, you’ll check in with your doctors to review the procedure and discuss any questions you may have. • An anesthesiologist will administer an anesthetic medication through an IV tube into a vein in your arm or hand. Once you are asleep, a breathing tube will be used to aid respiration. DURING • The doctor makes tiny incisions (typically just two) in the skin over the back of your pelvic bone (not in the hip or spine). A syringe is inserted through these incisions to collect liquid marrow from inside the bone. AFTER • A bandage is placed over the incisions (stitches are not necessary). • You will be moved to a recovery room where you will be observed until you are fully alert and physically stable.
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THE TWO WAYS TO DONATE > BONE MARROW DONATION >THE PROCESS
COMMON SIDE EFFECTS Nearly every donor experiences some side effects, but most do not experience all of them. DONATION • Lower back pain • Fatigue • Mild stiffness when walking • Bleeding from incisions ANESTHESIA • Sore throat (from the breathing tube) • Mild nausea and/or vomiting • Decrease in blood pressure • Grogginess RECOVERY • It’s normal to experience some pain, bruising and stiffness during the first two to three weeks after donation. • Most donors return to work, school and any other non-strenuous activities within a few days. • You should avoid physical labor, heavy lifting, bending and strenuous exercise for about two weeks after donation. • Alert family, friends and coworkers that you might need to alter routines for a bit, i.e. reduced travel, lighter duty tasks or more assistance caring for children. • Your bone marrow will completely replenish itself within three to six weeks.
THE TWO WAYS TO DONATE > BONE MARROW DONATION > SIDE EFFECTS
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“To me, it was not painful. I felt sore – like I had a tough workout. If this is the hardest thing I’m ever going to have to do to help save another human being, then sign me up -- I’ll do it again.” – Melissa, bone marrow donor
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THE TWO WAYS TO DONATE > BONE MARROW DONATION
PREPARING FOR DONATION Once you’ve been confirmed as the best available match for the patient, you’ll take the next steps toward donating. In most cases, you will donate one to three months after confirmation, depending on the health of the patient. INFORMATION SESSION One of our coordinators will contact you to schedule an hour-long telephone information session. During this call, you will: • Find out whether you will be donating peripheral blood stem cells or bone marrow. • Learn details about the donation process and have the opportunity to ask questions. • Review and sign the consent form for donation. • Begin scheduling a physical exam and the donation procedure. • Start planning travel arrangements for you and a companion of your choice for the donation. PHYSICAL EXAM This is a comprehensive exam to make sure donation is safe for you. The physical exam includes: • An electrocardiogram (EKG) and chest x-ray • Lab work: urinalysis, blood tests, and pregnancy test for women. If you are pregnant, you will not be allowed to donate. • A vein assessment for PBSC donors to confirm that your blood can safely be drawn through your arms. In less than 10% of cases, a central line may be needed. • For marrow donors only, a unit of blood may be collected to have available for transfusion after the procedure, if needed. This is called an autologous unit and it is reserved just for you.
PREPARING FOR DONATION
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AFTER THE EXAM We’ll review your results and notify you of any unexpected outcomes. If the findings show a risk to you or the patient, you will not be able to donate. SCHEDULING The exam is held on a weekday, two to three weeks prior to donation, and is typically conducted at the hospital where you will donate. It takes approximately three to four hours, but you should plan to commit a full day. Once you are medically cleared for donation, the transplant center will be notified and final preparations for the patient’s transplant will be made, including a preparatory regimen for the patient. It’s important to note that once a patient begins the chemotherapy and radiation they need to prepare their body for transplant, they must get the transplant or the consequences are life-threatening.
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PREPARING FOR DONATION > SCHEDULING
TIMING AND TRAVEL The time commitment for donation is generally 20-30 hours over a three to six week period. In rare instances it can extend longer. You will likely need to miss a few days of work or school for your donation as well as recovery. Depending on the donation method and the nature of your work you may need to take additional time before returning to any physically strenuous activities. We can provide documentation to your employer or school to verify the medical nature of your absence(s). Many donors will have to travel to one of our partner hospitals for the physical exam and donation. We arrange and pay for all transportation and accommodations for you and, on the day of donation, also for a friend or family member. We also cover childcare costs on the day(s) of your donation.
PREPARING FOR DONATION > TIMING AND TRAVEL
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“The entire experience from start to finish is something that I’ll never forget. All the people involved were great and very helpful all the way through. I would definitely do it all over again, as many times as needed.” —Matt, PBSC donor
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READ MORE ABOUT THE DONORS WE WORK WITH: DELETEBLOODCANCER.ORG/STORIES
AFTER DONATION THE PATIENT GETS THEIR TRANSPLANT The cells you donated will be infused into the patient within one to two days of your donation. The cells move into the patient’s bone marrow and can begin growing and producing new cells. The patient will stay in the hospital between 30-100 days until their blood counts approach normal levels and their immune system rebuilds. PATIENT UPDATES You may be eager to hear about your patient’s progress, but updates are subject to the policies of your patient’s hospital (often referred to as a “transplant center”). While some centers provide updates during the first year after transplant, some have confidentiality policies that don’t allow for any. Your coordinator will let you know what to expect. ANONYMOUS COMMUNICATIONS Communicating with your patient is also subject to hospital policies. During the first year after donation, many centers allow anonymous written communication facilitated through them and Delete Blood Cancer. All correspondence with the patient must be free of any selfidentifying details such as name, address, city, state or other contact information. DIRECT CONTACT After a year or more, some centers allow direct contact between donors and patients. This is arranged only if both you and the patient consent to it. Some centers may not allow any communication—anonymous or direct—which can be disappointing for you. Your coordinator will let you know what to expect.
AFTER DONATION
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“It’s just amazing to me that I can live again. I have one more chance at living – to actually be able to do something.” —Darian, a cancer survivor, with her donor Evander Holyfield Jr.
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READ MORE ABOUT THE PATIENTS WE WORK WITH: DELETEBLOODCANCER.ORG/STORIES
WHY A PATIENT NEEDS YOU A bone marrow or stem cell transplant can save their life A bone marrow or stem cell transplant is a potentially lifesaving treatment for patients fighting blood cancers like leukemia and lymphoma, as well as other blood diseases like sickle cell anemia. In many cases, patients have tried other treatments unsuccessfully and transplant is their last hope. Approximately 70% of patients must rely on the generosity of registered donors for transplants.
How does a transplant work? A transplant replaces the patient’s unhealthy blood stem cells—these are the cells that make the red and white blood cells as well as platelets—with healthy ones from a donor like you. Prior to transplant, a patient receives high dosages of chemotherapy and possibly radiation therapy to completely destroy all the diseased cells in their body and immune system so it can’t reject the donor’s cells. Soon after this, the donated cells are infused into the patient and move through the bloodstream to settle in the bone marrow, where they begin to grow and produce new healthy blood cells and platelets in a process called engraftment.
WHY A PATIENT NEEDS YOU
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SHARING WITH CARE We know donation can be a powerful experience. You’re doing one of the best things you could ever do by helping give someone a second chance at life. You may want to share the news with friends and family, and may turn to social media to do so. For reasons of confidentiality and privacy, we ask that you do not share the exact date or location of donation or the exact age and diagnosis of the patient. It’s simply too easy for other parties to piece together clues and possibly generate unwanted publicity for both the patient and you. EXAMPLE:
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AFTER DONATION > SHARING WITH CARE
“If I didn’t have a bone marrow transplant, I wouldn’t be here today.” —Kerri, transplant recipient
DOWNLOAD A PDF OF THIS GUIDE: DELETEBLOODCANCER.ORG/DONORS
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FREQUENTLY ASKED QUESTIONS
What is Delete Blood Cancer DKMS? Delete Blood Cancer DKMS leads the fight to save lives by working with families, communities and organizations to recruit more bone marrow donors and provide more patients with life-saving transplants. It started with one family’s search for a bone marrow donor and is today part of the world’s largest bone marrow donor center with branches in the United States, Germany, the United Kingdom, Poland and Spain. Every person we register as a potential bone marrow donor is listed on the national Be The Match Registry® operated by the National Marrow Donor Program (NMDP). Together with our international Delete Blood Cancer and DKMS branches, our donors make up 35% of this registry. During the course of the donation process, Delete Blood Cancer donors will encounter paperwork from Be The Match® and the NMDP, however the entire procedure will be coordinated with care by Delete Blood Cancer.
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FREQUENTLY ASKED QUESTIONS
DONATION
Can I choose the donation method? The donation method is selected by the patient’s doctor based on which procedure they believe is best for the patient. That is why we ask that you be comfortable with the prospect of both PBSC collection and bone marrow donation. If you are not willing to donate through one of these methods, please notify your coordinator immediately.
Does bone marrow donation involve my spine? No. The marrow is extracted from the back of your pelvic bone using a special syringe.
Will I permanently lose my stem cells? For either donation procedure, the amount of stem cells collected is only a fraction of your body’s total. Your donation does not weaken your immune system and the cells will naturally replenish themselves within a few weeks.
Will my existing medical condition prevent me from donating? We take the health and safety of our donors very seriously. All donors are required to complete a health history questionnaire before proceeding. Any medical concerns you raise are reviewed by our medical staff to fully assess your ability to continue as a donor. If you are concerned about your ability to donate, please contact your coordinator and they will carefully assess your eligibility. Depending on your health status, it is possible that you may be temporarily unavailable to donate or need to be permanently removed from the registry.
FAQ > DONATION
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LOGISTICS
When will I donate? In most cases you will be asked to donate one to three months after the confirmatory blood test. We will always try to give you three to four weeks notice. If there are any important dates that you cannot donate, we will make every effort to accommodate your schedule.
Where will I donate? We work with a number of hospitals across the country. Although we try to schedule our donors at the hospital closest to their home, oftentimes donors must travel by car, train or airplane. Delete Blood Cancer will arrange and pay for your transportation and accommodations. In most cases, you will donate at the same facility where you will have your physical exam.
Will my donation date change? Donation depends on both your health and that of the patient. Delays are common – in the time it takes for you to go through testing and the physical exam the patient’s health can take a turn, either postponing or even canceling donation. This can be very disappointing, but please know that the patient is grateful that you were willing to help them.
Who covers the expenses? The patient’s insurance and Delete Blood Cancer cover all medical, travel, lodging and meal expenses related to donation. Delete Blood Cancer will also cover the costs for a companion to travel with you for the donation procedure. There is no cost to you and your insurance will never be used. Donation-related, out of pocket expenses will be reimbursed.
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FAQ > LOGISTICS
“I would donate again in a heartbeat. A little bit of time to potentially save someone’s life.” —Bennett, PBSC donor
DOWNLOAD A PDF OF THIS GUIDE: DELETEBLOODCANCER.ORG/DONORS
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Will I be compensated for the time I take off from work? If your employer does not provide paid time off for donation, Delete Blood Cancer has a financial assistance program for lost wage compensation. If you qualify for assistance, your coordinator will give you more information about applying for aid. MATCHING
What makes a good match? Doctors generally look at ten specific HLA markers to determine a match. The closer the match the better the chances that the patient’s immune system will recognize donated cells as its own and allow them to grow and make new healthy blood cells. We generally don’t find out exact patient-donor HLA match ratios.
Am I the only match? It is possible for a patient to find multiple potential matches, however that information is known only to the patient’s doctor and not us. The doctor will select the best donor based on how close the HLA match is, and will also consider the donor’s age, sex, size, health history, and availability along with other factors. If you are contacted as a potential match, but not selected for donation, we will inform you. You will remain on the registry to be available for other searching patients.
Do ancestry and ethnicity affect matching? Heritage is a very important factor. Like hair and eye color, your HLA type is inherited, so the best matches generally happen between patients and donors who share the same ancestry.
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FAQ > MATCHING
THE DONATION JOURNEY: FROM JUST MATCHED TO JUST DONATED There are many steps that come between being called as a potential match to resuming life after donation. Delete Blood Cancer will be by your side the entire way. Though you’ll work with different people as you move through the process, you’ll experience how we’re all united in making sure you always get the best in personalized care and support.
CONFIRMATORY TYPING (CT)
• You’re a potential match! • Medical questionnaire • Blood test
WORK UP (WU)
• You are the best available match! • Physical exam • Donation
FOLLOW UP (FU)
• Recovery • Patient updates
All these stages are handy to know, but you don’t need to memorize them. Most of our donors call to tell us that they enjoyed working with “Amy” and “Billy” and “Nikki” rather than CT and WU and FU!
THE DONATION JOURNEY
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“Our job is to represent our donors, to make sure it’s safe for them, and to look out for every single thing possible to be sure the donation process goes as smoothly as possible.” – Billy Tsang, donor coordinator
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QUESTIONS? CONTACT US AT 212.209.6700 OR INFO@DELETEBLOODCANCER.ORG
THINK IT OVER, TALK IT OVER It’s important to discuss your decision to donate with the family and friends closest to you. It’s likely that they won’t know much about bone marrow donation and may be surprised to learn you registered as a potential donor. This guide is a good starting point for explaining the basics—what bone marrow donation is, the two ways to donate and how a bone marrow transplant from a healthy person like you can save a life. Your coordinator can also provide other print and digital resources. It’s important for family and friends to know the personal side of your decision—your motivations and convictions— so they can provide better support. Some good ways to do this include: • Explaining what inspired you to register • Discussing why you are committed to donating • Sharing how amazing it is that you so closely match a stranger • Opening up about your fears and hopes about donating Your coordinator is always available to help you with your discussions. They’re also willing to talk to a spouse, a parent, an HR professional, a college administrator, a coach or anyone concerned about you and how donation will impact your health, your school/work schedule and more.
THINK IT OVER TALK IT OVER
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NOTES
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NOTES
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WHY WE NEED BONE MARROW DONORS While 30% of patients can find a donor within their family, 70% must rely on perfect strangers to donate. Every year, more than 14,000 Americans need transplants using donated marrow. Less than half will get them. Diversity matters. Most patients find a donor in someone who shares their ancestry.
DELETEBLOODCANCER.ORG
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Contact us!
Delete Blood Cancer Donor Management Team
DELETE BLOOD CANCER | DKMS 100 Broadway, 6th FL. New York, NY 10005 Tel 212.209.6700 Fax 212.209.6799 info@deletebloodcancer.org Find Us Online: DELETEBLOODCANCER.ORG /deletebloodcancer @getswabbed @deletebloodcancer
SE H A B L A ESPA Ă‘ O L