Q: What is stem cell transplantation? Is there more than one kind?
A: Stem cells, which are in your bone marrow and blood, allow new marrow to grow in a patient in need of transplantation. Patients whose marrow is diseased require new stem cells from a healthy donor to enable their own body to grow new marrow. Stem cells collected from a donor are infused into a patient's veins through an IV, just like a blood transfusion. Infusion of stem cells collected from a donor's bone marrow is referred to as a bone marrow transplant. Infusion of stem cells collected from a donor's blood is referred to as a peripheral blood stem cell transplantation, or PBSC. Within two to three weeks, the transplanted stem cells can begin to grow normal cells within the patient. The match for the transplantation has to be nearly perfect. Some patients can find a match within their own family, but for the most part, an unrelated donor is needed.
Q: Which diseases can be treated with transplantation?
A: Various types of chronic and acute leukemia, aplastic anemia, lymphoma, myeloma, radiation poisoning, and some genetic diseases can be treated by stem cell transplantation.
Q: Are donors only searched for American patients?
A: No, donors are searched for every registered patient seeking an unrelated donor. These patients are from countries all around the world. Many American donors have donated marrow for international patients and many American patients have found donors from international donor sources.
Q: Who can become a stem cell donor?
A: You may register to become a donor when you are 16 years old, but you must be between the ages of 18 and 60 to donate stem cells. You must also be in general good health, with no history of serious disease; possess a positive attitude and pride in wanting to become a donor, and sign a standard consent form allowing the registry to include your tissue type in its computerized files for future matching.
Q: What can I expect when I register?
A: You will be asked to read donor education information, complete a consent form and answer a simple health questionnaire. We will need a sample of cells from the inside of your cheek for testing for the human leukocyte antigen (HLA) types. Once your results are complete, you will receive a letter with your HLA type listed, along with a donor identification card. After that, we ask that you keep us posted on any changes in your contact information, because if it is determined you may be a match for a patient, time is of the utmost importance and we may need to reach you quickly.
Q: How do you get my sample for HLA testing?
A: You will be instructed on how to collect cells from the inside of your cheek using swabs. These will be used to determine your HLA type. In some circumstances, a health care professional may swab your mouth directly. If you are not registering at a recruitment drive, a kit with complete instructions will be sent to you.
Q: What happens if I am a match?
A: If you are found to be a possible match for a patient needing transplantation, we will contact you immediately and give you the option of proceeding to a final test to confirm HLA compatibility with the patient. These tests, authorized by the patient's physician, are paid for by the patient or his/her medical insurance plan. Then, if the match is confirmed, the transplantation can be scheduled, but only with your legal consent, given after in-depth counseling and thorough physical examination.
Q: How is marrow extracted?
A: If you are identified as a match for a patient and donate bone marrow, you are given light, general or local anesthesia so that you feel nothing during the procedure. Only two to three percent of your marrow is generally collected from your hip area through special sterile needles. You may go home the same day or following day. Your marrow will replace itself in approximately four to six weeks, in most cases.
Q: How are peripheral blood stem cells extracted from my blood?
A: Although stem cells exist in your blood stream, there are not enough to provide for a peripheral blood stem cell transplantation. To increase the number of stem cells, you
will receive a medication by injection once a day over four to five days. The PBSC collection (similar to donating blood) occurs after the fourth or fifth day of medication.
Q: What are the risks?
A: There are potential risks to donating stem cells and these include the risks typically associated with receiving medications or anesthesia. Potential risks associated with stem cell donation will be discussed in detail with you by the medical staff of a stem cell collection center before you sign a final consent to donate. You will receive a complete physical examination and a donor advocate will accompany you during this process.
Q: What happens to the patient?
A: If the transplant is successful, the new stem cells begin to produce normal, healthy blood cells within two to three weeks. The patient has received the gift-of-a-lifetime.
Q: Who pays the total cost to donate my marrow?
A: Not you - the patient or his/her medical insurance does. Any reasonable expenses you incur during the stem cell donation process will be reimbursed.
Q: What do you do to insure my privacy?
A: There are two important ways the registry protects your privacy.
1. The registry adheres to all HIPAA regulations regarding privacy and the sharing of personal information. Once in the registry, your information is searched using only a donor identification number for reference.
2. Should you go on to donate stem cells, your identity will remain anonymous to the recipient. The option of eventual personal contact with the recipient may be discussed with you and requires advanced written consent from both you and the patient.
Q: Why do you ask for so much of my personal information?
A: The medical information requested is to ensure donor and patient safety, as well as eligibility. Personal information, such as your Social Security Number and secondary contacts, is used to help us locate you in the future.
Q: Can I withdraw as a donor at any time if I want to?
A: Yes, but once you have given your final consent during the workup process and the patient has begun pretreatment conditioning the consequences of your withdrawal can be lethal to the patient.