Patient Frequently Asked Questions

Understanding blood and marrow transplants

A: Blood-forming cells are one of several types of cells in your body that can grow into other types of cells. Blood-forming cells grow into red blood cells, white blood cells and platelets, all of which are important for your body. Red blood cells carry oxygen to all parts of your body. White blood cells help the body fight infection. Platelets help control bleeding. A healthy body is always making new blood-forming cells. A person cannot survive for long without healthy blood cells.

A: The cells used in transplants can come from three sources: bone marrow, human blood, and the blood in the umbilical cord after a baby's birth.

• Bone marrow produces blood cells for the body. Bone marrow is a spongy tissue found inside larger bones. Doctors remove the bone marrow from a donor's hip bone in a surgical procedure using sterile needles and syringes. The donor's body replaces the donated bone marrow in four to six weeks.
• Peripheral blood cells (PBSC) are cells found in the bloodstream. Normally, the bone marrow releases only a small number of blood-forming cells into the bloodstream. To donate PBSC, a donor is given shots that make more blood-forming cells move into the blood. The cells are collected from the blood using a process called apheresis. In apheresis, a needle is placed in the donor's vein, usually in his or her arm. The donor's blood passes through a machine that removes the cells from the donor's blood. The rest of the blood returns to the donor. The donor's body replaces the donated cells in two to three weeks.
• Umbilical cord blood is collected from the umbilical cord and placenta after a baby is born. This blood contains large numbers of blood-forming cells. The donated cord blood is frozen and stored at a cord blood bank for future use.

Related Links:  
Steps of Marrow & PBSC Donation, How to Donate Cord Blood 

A: A transplant is a standard treatment option for many patients with life-threatening blood, immune system or genetic disorders. A transplant replaces your unhealthy blood-forming cells with healthy ones. To prepare for the transplant, you may be given strong chemotherapy and/or radiation therapy. This treatment kills your unhealthy cells. Then healthy blood-forming cells are given to you in your vein. This is like a blood transfusion. The transplanted cells begin to grow and make the red blood cells, white blood cells and platelets your body needs. This is called engraftment. It typically takes three to four weeks. Until your transplant has engrafted, you stay in the hospital or are seen often in a clinic so doctors can check your progress.

Related Links:
Learning about Bone Marrow or Cord Blood Transplants 

A: There are two basic types of blood cell transplants. A transplant may use cells taken from a donor or from the patient:

• If you have an autologous transplant, your own blood-forming cells are collected from your marrow or blood and frozen. You receive high-dose chemotherapy and/or radiation therapy. Then your cells are put back. Whether or not an autologous transplant is an option for you depends on your disease and other factors. Autologous transplants may be used to treat patients with diseases such as Hodgkin disease, non-Hodgkin lymphoma, multiple myeloma and some solid tumors.
• If you have an allogeneic transplant, you get cells from a donor. The donor's tissue type must suitably match yours. The donor can be either related or unrelated to you. Related donors are usually a brother or sister. If no matching family member is found, your doctor can contact the National Marrow Donor Program^® (NMDP) to find an unrelated donor or cord blood unit for you on Be The Match Registry^®  and other registries worldwide. Every search through the NMDP provides you with access to more than 18.5 million potential donors and more than 590,000 cord blood units on U.S. and global registries.
  (See How is a suitably matched donor or cord blood unit found? below to learn more about how donors are matched with patients.)

A: A marrow or cord blood transplant could benefit more than 10,000 people with life-threatening diseases each year. Approximately 72% of transplants facilitated by us have some form of leukemia, including:

• Acute lymphoblastic leukemia (ALL)  
• Acute myelogenous leukemia (AML)  
• Chronic myelogenous leukemia (CML)  

Other diseases that may be treated with a transplant include:

• Inherited immune system disorders  
• Severe aplastic anemia  
• Hodgkin disease
• Myelodysplastic syndromes  
• Non-Hodgkin lymphoma  

For a more complete list, see Learning More about Your Disease.

A: A cord blood transplant uses cells collected from the blood in a newborn infant's umbilical cord. The blood in the umbilical cord and placenta contains large numbers of blood-forming cells. Cord blood is collected from the umbilical cord and placenta after a baby is born. The donated cord blood is frozen and stored at a cord blood bank for future use. The stored cord blood is called a cord blood unit. Doctors search the Be The Match Registry of potential donors and cord blood units to find a suitable match for their patients who need a transplant. If selected, the cord blood is transplanted to a patient.

If you have questions about a cord blood transplant for yourself, discuss them with your doctor. Your doctor will look at many factors to decide whether cord blood transplant is a good option for you. To learn about some of these factors, see Cord Blood Transplants.

Related Links:  
Donate Cord Blood. Share Life, Advances in Transplant: Helping More Patients 

A: Reduced-intensity transplants use less intense treatment to prepare for transplant than standard transplants. They are also called non-myeloablative transplants or mini-transplants.

With a standard transplant, patients are prepared for transplant with very strong (high dose) chemotherapy and/or radiation therapy. This treatment destroys unhealthy cells such as cancer cells. It is also very hard on the body. Because of this, standard transplants are not an option for some patients. Older age and some medical problems can rule out standard transplants.

Reduced-intensity transplants may be an option for some of these patients. These transplants use less intense treatment before transplant to destroy some of the unhealthy cells. The immune system grown by the transplanted cells may then destroy the rest of the unhealthy cells. Reduced-intensity transplants are still a newer treatment. Results so far seem to show this is a good treatment for some patients. It will take time to learn whether these patients stay healthy for many years.

Related Links:  
Reduced-Intensity Transplants, Advances in Transplant: Helping More Patients 

Deciding whether to have a blood or marrow transplant

A: It is important to think about both the risks and the benefits of a transplant. A transplant doctor can answer your questions and help you decide if a transplant is a good option.

A blood or marrow transplant has serious risks. Some patients suffer from life-threatening problems as a result of their transplant. These problems can include serious infections and graft-versus-host disease (GVHD), in which the transplanted cells attack the patient's body.

On the other hand, a transplant may be your best hope for a cure or a longer life. You, your doctor and your family need to consider many things, including:

• Your disease stage
• Your age
• Your overall health
• Other treatment options

Related Links:  
Discussing Options with Your Doctor, Evaluating Your Health Before Transplant 

A: Since it began operations in 1987, the NMDP has facilitated more than 50,000 marrow and cord blood transplants to give patients a second chance at life. We work only with unrelated adult donor or cord blood transplants. Many thousands of related donor transplants and transplants using the patient's own cells (autologous transplants) have also been done. The chances the transplant will work are different for each patient. How well the transplant works depends on many things, such as:

• The disease being treated
• The stage of the disease
• The patient's age and general health
• How well the donor's tissue type matches the patient

Other things can also make a difference. Please talk with your doctor about your own situation.

Related Links:  
Transplants by Disease Charts, When to Consider Transplant 

A: Adult donors and cord blood units are carefully screened and tested. These tests are done to reduce the risk that a donor could pass a disease to a transplant patient. Before they are approved to donate, donors:

• Are tested for infectious diseases such as AIDS and hepatitis.
• Answer questions about their health history. This helps doctors find risks that the donors have an infectious or hereditary disease.
• Are checked by doctors for signs of disease.

We keep up to date with medical information. Sometimes new or rare diseases such as West Nile virus or severe acute respiratory syndrome (SARS) become public concerns. When this happens, we use available methods to watch for these diseases. If a potential donor shows signs of disease, in some cases he or she will not be allowed to donate. In other cases, where the risk to the patient is considered small, it may be up to the transplant doctor and patient whether or not to use that donor.

Marrow and cord blood donations are thoroughly screened, much the same as donations of whole blood are. Even so, donated whole blood cannot be guaranteed 100% free of infectious diseases. In the same way, the risk that donated blood or marrow cells carry a disease cannot be completely eliminated.

Related Links:  
NMDP Guidelines to Safeguard Patients, Medical Guidelines: Joining the Registry, Eligibility Guidelines: Cord Blood Donation 

A: Hospitals that do marrow or cord blood transplants are called transplant centers. There are many transplant centers in the United States and worldwide. Here are some things to think about that may help you find the right transplant center:

• Does your health plan have rules about which transplant centers are covered? Contact your health plan to find out about your insurance coverage.
• Did your doctor recommend a transplant center for you?
• Does the transplant center do unrelated donor or cord blood transplants? Some centers do only autologous or related donor transplants.
• Has the transplant center done transplants for many patients with the same disease as you?
• Has the transplant center cared for many patients in your age group? Some centers work mostly with adults or mostly with children.

Many transplant centers that do unrelated donor transplants work with the National Marrow Donor Program (NMDP). (The NMDP operates Be The Match.) You can find a lot of information that will help you with your choice of transplant centers in Choosing a Transplant Center.

Related Links:  
Things to Consider When Choosing a Transplant Center, Transplant Center Experience , About Us 

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A: An unrelated donor or cord blood transplant is expensive. Most health plans cover at least part of the cost, but they don't always cover the cost to search for a suitably matched donor or cord blood unit. In the United States, you can also check with state and federal programs such as Medicaid and Medicare to find out if you are eligible for these government health benefits. Whether or not they pay for your transplant often depends on the state or territory where you live, as well as your disease. For help understanding your health plan, you can call your health plan, place of work or county human services office.

When you get to a transplant center, ask your transplant coordinator to put you in touch with someone who can help you with insurance and money matters. We offer a free financial guide for transplant patients called Mapping the Maze. This guide can help you plan for the costs of transplant.

Related Links:  
Insurance and Transplant Coverage Information, Planning for Transplant Costs, Glossary of Health Care Coverage Terms, Transplant Costs at Different Centers, Financial Assistance for Transplant Patients 

Searching for a suitable donor

A: A well-matched donor or cord blood unit is one of the factors that are important to the success of your transplant. To look for a donor or cord blood unit, your doctor will take a blood sample to test for your human leukocyte antigen (HLA) type. HLA are proteins — or markers — found on most cells in your body. Your immune system uses these markers to recognize which cells belong in your body and which do not.

Because HLA markers are inherited, someone from your own family may be your closest match. However, 70% of patients do not have a matching donor in their family. If you do not have a related donor, your doctor can work with the NMDP to find an unrelated donor or cord blood unit on the Be The Match Registry and other registries around the world. The Be The Match Registry includes 9.5 million volunteer donors and nearly 165,000 umbilical cord blood units. Every search through the NMDP provides you with access to more than 18.5 million potential donors and more than 590,000 cord blood units on U.S. and global registries.

If you need an unrelated donor or cord blood unit transplant, your primary doctor will refer you to an NMDP transplant center. The transplant center will work with us to conduct a worldwide search for the best available donor or cord blood unit. The best available donor or cord blood unit may match you at all or at some of the HLA markers your transplant center is looking at. Many patients who receive an unrelated donor transplant have a partially matched donor or cord blood unit.

Even with so many possible donors, some patients face a greater challenge in finding a suitable donor or cord blood unit. To improve the chances for all patients to find a match, we work to increase the number of donors and cord blood units and the diversity of HLA types on the registry. On average, more than 54,000 new, potential donors join the Be The Match Registry each month.

You are not responsible for finding your own donor. In general, we encourage patients and their immediate families to focus their energies on caring for the patient. However, some families want to get involved in recruiting donors to the Be The Match Registry. If you want to raise awareness about the need for more donors, we can help. To learn more, see Recruit Donors.

Related Links:  
The Search Process, View Potential Matches for Your HLA Type 

A: To find a match, doctors look at HLA markers on your cells. (See How is a suitably matched donor or cord blood unit found? above for more about what HLA markers are.) Because you inherit half of your HLA markers from your mother and half from your father, each brother and sister who has the same parents as you has a 25% chance of matching you. It is very unlikely that extended family members will be a match for you. It is also unlikely that a friend or neighbor will match you. Your doctor can tell you more about who should be tested and how this can be done.

If your friends and family members are willing to be donors for anyone, not just for you, they may be able to join the Be The Match Registry.

Related Links:  
Recruit Donors 

A: Contact your transplant center coordinator or doctor. They will keep you up to date on how your search is going. If you have general questions about the unrelated donor search process, or you need information in a language other than English, you can contact Be The Match Patient Services.

A: You will not know who your donor is at the time of your transplant if you found your donor through the NMDP. We follow strict confidentiality standards to protect the privacy of both you and your donor. U.S. law and our federal contract require us to have a system to keep donor and patient information confidential. Our post-transplant communication guidelines are a crucial part of this system.

According to these guidelines, you and your donor cannot learn each other's identities for at least the first year after your transplant. Some centers do not ever allow you and your donor to learn each other's identities.

After your transplant, if contact is allowed, we will help you exchange letters, cards or gifts anonymously. Staff at the transplant center and donor center will check what you send to be sure no identifying details are shared. To learn more, see the guidelines for contacting your donor and play the What Can I Send? game for examples of the guidelines in action. Some centers do not allow you and your donor to have any kind of contact at all.

After one year, many centers allow you to meet your donor if you and your donor both sign release forms. In this case, we will let you know how to contact each other. Some centers do not allow you to have contact with your donor at any time.

Related Links:  
Maintaining Donor & Patient Confidentiality 

Getting help

A: You can turn to Be The Match Patient Services to help you:

• Understand unrelated donor or cord blood transplant
• Answer questions about your health insurance coverage and transplant costs
• Find a transplant center that meets your treatment needs
• Learn about life after a transplant

We have a team dedicated to supporting patients, caregivers, family members and friends. Our patient services coordinators offer you one-on-one support and financial guidance. We also offer educational resources — DVDs, booklets, online tools and more.  Our goal is to get you what you need, when you need it.

Our patient services coordinators are available between Monday - Friday, 8 a.m. to 5 p.m. Central time.

• Inside the United States, call 1 (888) 999-6743. This call is toll-free in the United States.
• Outside the United States, call 1 (612) 627-8140. This call may have long-distance or international charges.
• You can also send an e-mail message to patientinfo@nmdp.org.

Interpreters are available
Many of our materials are available in multiple languages. If you need to speak with us in a language other than English, call and tell us — in English — what language you speak. It will take 4 to 8 minutes for an interpreter to join the call. Please stay on the line.

Related Links:  
Organizations that Can Help: A Searchable Directory