FAQs

General FAQs

What are bone marrow and stem cells?

Bone marrow is the soft, red sponge-like material found inside flat bones. It is the factory where the blood cells are produced from – the so called “hematopoietic stem cells”. Bone marrow produces 5.000.000.000 per day which include red cells that transport the oxygen, white cells of the immune system that fight against infections and cancer diseases and platelets that stop bleeding.

Who needs a bone marrow or stem cell transplant?

Allogenic bone marrow or hematopoietic stem cell transplants are performed in order to “replace” the immune system with a “new” one from another donor in order to fight hematological cancers which infiltrate the bone marrow or when a person’s marrow doesn’t function properly. The most common reasons for a bone marrow transplant include leukemia and lymphoma, aplastic anemia, (a disorder in which the marrow stops making new blood cells) and hereditary hemoglobinpathies (thalassaemia, sickle cell disease) and immune deficiencies (like SCID).

WHY AND HOW TO BECOME A VOLUNTEER BONE MARROW DONOR?

Why is there a need for people to apply and join the donor registry?

Thousands of patients with blood cancers like leukemia and lymphoma, sickle cell anemia or other life-threatening diseases depend on the worldwide Volunteer Donor Registry to find a match to save their life. Patients need donors who are a genetic match. Even with a registry of millions, many patients cannot find a match. To help more patients find a donor, we need to increase the ethnic diversity of the registry.

Is there an age limit for donors?

Doctors choose donors based on what is best for their patient. When more than one potential donor is a good HLA match for a patient, doctors will also consider other factors, including the donor’s age. Research shows that cells from younger donors lead to more successful transplants. Doctors request donors in the 18-45 age group 86% of the time.

Does race or ethnicity affect matching?

Because tissue types used in matching are inherited, you are most likely to match someone of the same ethnic ancestry or ethnic background.

How is a bone marrow match determined?

Doctors look for a donor who matches their patient’s tissue type, specifically their human leukocyte antigen (HLA) tissue type. HLAs 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. The closer the match between the patient’s HLA markers and yours, the better for the patient.

How likely is it that I will match a patient and go on to donate?

Because of the vast variation in tissue types, we can’t predict an individual registry member’s chance of donating to a patient. If you have a relatively common tissue type, you might be one of many who could match a searching patient. If you have an uncommon tissue type, you may never match a patient, or you might be the only one on the registry who can save a person’s life. Every person who joins the registry gives patients more hope of finding the match they need. The most important thing you can do as a registry member is to stay informed and committed so that if you’re selected as the best donor, you’re ready to move forward.

How do I use the registration kit to collect a cheek cell sample?

When you join the registry, you will use our registration kit to give a swab of cheek cells. We will analyze the sample you provide and use the results to match you to patients. Once you join online, you will receive your kit in the mail. Instructions are included in your kit.

I’ve already been tested for a family member. How can I add my results to the Registry?

Get a copy of your human leukocyte antigen (HLA) tissue typing lab report and call us. You will need to fill out a health history form to verify you meet medical guidelines. You will also need to sign a consent form agreeing to be listed on the Registry. Once you are listed on our registry, we will contact you if you are identified as a possible match for a patient.

Can I get tested for a specific patient or family member?

When you join the Registry, you make a commitment to donate to any patient in need who matches you. As a volunteer, you are never under any legal obligation to donate and your decision is always respected. However, because a late decision not to donate can be life-threatening to a patient, please think seriously about your commitment before deciding to join our registry. You can request a copy of your own testing results after you join the Registry. However, if you want to be tested only for a specific patient, you will need to have your testing done privately. You can contact the patient’s transplant center or transplant doctor for more information.

How do I become a bone marrow donor?

The first step to become a bone marrow donor is to join the Registry. If a doctor selects you as a match for a patient, you may be asked to donate stem cells from blood (PBSC) or bone marrow.

How will I know if I’m asked to donate PBSC or bone marrow?

When you join the registry, you agree to donate by whichever method is needed. The patient’s doctor asks for either marrow or PBSC, depending on what is best for the patient.

How long does donating take?

Becoming a donor requires a time commitment. Before you donate, there are several steps to make sure you are the best donor for the patient. These steps include an information session to provide resources to help you make your decision, as well as appointments for additional blood tests and a physical exam. The time needed for the actual donation depends on the donation procedure.

What is my commitment if I join?

When you join the Registry, you make a commitment to:

> Keep us updated if your contact information changes, if you have significant health changes, and if you change your mind about being a donor.

> Respond quickly if you are contacted as a potential match for a patient.

> Donate to any patient in need who matches you

> Be listed on the registry until your 61st birthday, unless you ask to be removed.

 

You have the right to change your mind about being a donor at any time. Donating is always voluntary.

 

If you decide you do not want to donate, let us know right away.

That way we can continue the search for another donor without dangerous delays for the patient.

Can I change my mind?

You have the right to change your mind about being a donor at any time. Donating is always voluntary. If you decide you do not want to donate, let us know right away. We will need to continue the search for another donor without dangerous — even life-threatening- delays for the patient.

WHAT IF I MATCH WITH A PATIENT?

What happens if I match a patient?

More testing will be done to see if you are the best possible match for the patient. We may ask for blood sample for confirmatory typing. Though almost all patient information is confidential, we can tell you the patient’s age, gender and disease. If the patient’s doctor selects you as the best donor for the patient, we will schedule an information session so you can learn more about the donation process, risks and side effects. At that time, we can also tell you the type of donation the patient’s doctor has requested — either bone marrow or cells collected from the blood, (PBSC) donation.

How can I donate bone marrow cells?

You may be asked to donate via peripheral blood stem cell (PBSC) collection or bone marrow donation. The patient’s doctor chooses the method that promises the best outcome for the patient, that’s why we ask that all registrants be comfortable moving forward with either method.

A. Peripheral Blood Stem Cell (PBSC) Donation

This is the donation method used in 75% of cases. PBSC donation is a non-surgical, outpatient procedure that collects blood stem cells via the bloodstream. During the procedure, your blood is drawn through one arm and passed through a machine that filters out the blood stem cells. The remaining blood is returned to you through your other arm. To increase your blood stem cells prior to donation, you will receive daily injections of a synthetic protein called filgrastim on the four days leading up to and on the morning of the procedure. The actual donation can take from 4-8 hours over the course of 1-2 days.

B. Bone Marrow Donation

This is the donation method used in about 25% of cases, generally when the patient is a child. It is a 1hour surgical procedure performed under anesthesia, so no pain is experienced during the donation. Marrow cells are collected from the back of your hip bone using a syringe.

Are there risks associated with donation? Does donating hurt?

The risks of stem cell donation are minimal. Both donation procedures will result in some level of discomfort, but most donors report that any pain experienced is easily eclipsed by the positive feelings of knowing they are possibly saving a life.

Possible Side Effects & Recovery of Peripheral Blood Stem Cell PBSC Donation

While taking filgrastim, you may experience flu-like symptoms such as headaches, bone and muscle aches and fatigue. Most side effects should subside within 48 hours of donating. You can take a pain reliever if you feel such a discomfort. Your blood countsreplenish within 1-2 days. You may return to your work and regular activities immediately.

Possible Side Effects & Recovery of Bone Marrow Collection

You may experience some discomfort, bruising or stiffness for up to 1-2 weeks after donation. Within a week of donating, you should be able to return to work, school and many regular activities. Your blood counts will completely replenish itself within 1-2 weeks.

We check up with you regularly after donation to make sure you are recovering properly.

Where is the PBSC or bone marrow donation done?

The PBSC donation procedure and bone marrow donation is done in a hospital near you with a licensed Bone Marrow Transplantation Unit

Who pays for the donation process?

Donors never pay for donating and are never paid to donate. The only costs to the donor might be travel expenses for the donation.

USEFUL INFORMATION FOR PATIENTS

What types of cancer treatment use BMT and PBSCT?

Bone marrow transplants can be the best or only treatment for patients fighting blood cancers like leukemia, lymphoma and myeloma as well as approximately 70 other conditions including sickle cell disease, severe aplastic anemia, immune system disorders and inherited metabolic disorders.

How is the procedure of a bone marrow or stem cell transplant?

A bone marrow or stem cell transplant is a potentially life-saving treatment for patients fighting blood cancers like leukemia and lymphoma as well as other blood diseases like sickle cell disease.

Prior to transplant, a patient undergoes high dosages of chemotherapy and possibly radiation therapy to destroy all the diseased cells in their body as well as their immune system so that it can’t attack the donated cells after transplant. During transplant, the donated cells are infused into the patient and move through the bloodstream into the patient’s bone marrow where they begin to grow and produce new healthy blood cells.

What is the difference between peripheral blood stem cell (PBSC) transplant and bone marrow transplant (BMT)?

In case of a peripheral blood stem cell (PBSC) transplant the blood-forming cells the patient takes are collected from the circulating blood of the donor. In case of a bone marrow-transplant the blood-forming cells are collected directly from the bone marrow we have at both sides of the back of our pelvic bone.

What happens after bone marrow or stem cells have been transplanted to the patient?

After entering the bloodstream, the stem cells travel to the bone marrow. There they begin to produce new white blood cells, red blood cells, and platelets in a process known as engraftment. Engraftment usually occurs within about 2 to 4 weeks after transplant. Your caregivers monitor it by checking blood counts on a frequent basis. Complete recovery of immune function takes much longer. It can take up to several months for autologous transplant recipients and 1 to 2 years for patients receiving allogeneic or syngeneic transplants. Caregivers evaluate the results of various blood tests to confirm that new blood cells are being produced and that the cancer has not returned. The removal of a small sample of bone marrow through a needle for examination (bone marrow aspiration) can also help caregivers determine how well the new marrow is working.

What are the possible side effects of BMT and PBSCT?

The major risk of both treatments is an increased susceptibility to infection and bleeding as a result of the high-dose cancer treatment. Caregivers may give the patient antibiotics to prevent or treat infection. They may also give the patient transfusions of platelets to prevent bleeding and red blood cells to treat anemia. Patients who undergo BMT and PBSCT may experience short-term side effects.

How do patients cover the cost of BMT or PBSCT?

The costs are covered from your health insurance.

How do I find a donor for my transplant?

You do not have to find your own donor. Your transplant team will look for the best donor or cord blood unit for you.

When should a donor search start?

Your transplant doctor knows when it’s best to start a donor search for you. If you haven’t seen a transplant doctor yet, ask your doctor if transplant may be an option for you. They can refer you to a transplant doctor. There are also guidelines on the best time to see a transplant doctor depending on the disease you have.

How is a donor found?

First, your transplant team tests your blood to learn your human leukocyte antigen (HLA) type. HLA are proteins — or markers — found on most cells in your body. Then, they look for a donor with HLA markers that closely match yours. Because HLA markers are inherited, your transplant team will ask to test your brothers and sisters first. If you don’t have a match in your family, your transplant team will work with the Registry to look for a matched unrelated donor.

Should my family members and friends get tested for me?

If you have brothers or sisters that share your same mom and dad, your transplant team may ask to test their HLA. It is very unlikely that extended family members, such as cousins, aunts and uncles, will be a match for you. It is extremely unlikely that a friend or neighbor will match you. Ask your doctor who in your family should be tested. If your friends and family members are willing to help any patient in need, they may be able to help in other ways.

 

How does my transplant team know which is the best donor for me?

Your transplant team will look for donors that match all – or most – of your HLA markers. They also test and screen potential donors to make sure they are a safe and healthy match for you. They may also consider the donor’s age and other factors to choose the best donor for you.

How likely is it that a match will be found for me?

Each brother and sister who has the same parents as you has a 25% chance (1 in 4) of matching you. Most people, about 70% (7 out of 10), don’t have a match in their family. If you don’t have a match in your family, your doctor will search the Registry to find a matched unrelated donor. Depending on your ethnic background, the chance of finding a match is between 66% and 99%.

What if there are no perfectly matched donors for me?

Donors do not have to be perfectly matched for transplant to work well. Many patients have done well after transplant from a partially matched donor. Ask your transplant team how closely matched your donor must be.

How long does it take to find a donor?

Every patient’s search is different. It usually takes about 3 months from when a transplant team starts to search for a donor until the day of transplant.

How do I find out how my search is going?

Contact your transplant team. They will keep you up to date on how your search is going. They have the most accurate and up-to-date information for you.

How much money will cost me to find donor?

The costs are covered from your health insurance.

Will I get to meet my donor?

There are privacy rules in place to protect you and your donor.

You won’t know who your donor is on transplant day but sometimes you get information like the gender, the age and the country your donor comes from. Depended on the law in the country your donor lives and if both sides want it, you may be able to contact your donor 1-2 years after transplant.

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