F.A.Q. - The Icla da Silva Foundation - Helping children & adults with leukemia

The Icla da Silva Foundation
Helping children & adults with leukemia.

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THE ICLA DA SILVA FOUNDATION
National Coordinating Center
11-49 47th Avenue, 2nd Floor
Long Island City, NY 11101

T: (212) 593-1807
T: (888) 638-2870
F: (718) 391-0990
E: info@icla.org

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F.A.Q.

Donor's F.A.Q.

What is a marrow transplant?

How is a match determined?

Does race or ethnicity affects donor/patient matching?

How is the Donation Process?

How likely is it that I will donate to someone?

What happens if I match a patient?

What are the MEDICAL GUIDE LINES FOR DONORS?

Who pays for donation expenses?

Could I change my mind about donating?

What is the donation procedure?

How will I know which donation procedure will be used?

What happens after I donate?

What is the risk to my recipient?

Will I get patient updates or meet my recipient?

How often should I update my information?

Am I in the Registry?

Patient's F.A.Q.

History of Marrow and Blood Cell Transplants

The Unrelated Donor Search Process

Steps of the Search Process

Q: What is a marrow transplant?

It’s a life-saving treatment for people with leukemia, lymphoma and many other diseases.
First, patients undergo chemotherapy and/or radiation to destroy their diseased marrow. Then a donor’s healthy blood cells are given directly into the patient’s bloodstream, where they can begin to function and multiply.

In order for a patient’s body to accept these healthy blood cells, the donor’s tissue type needs to match the patient’s type as closely as possible.

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Q: How is a match determined?

A match occurs when one person’s tissue type is very similar or identical to another’s. Human leukocyte antigen (HLA) testing determines whether a donor and patient is a good match. HLA antigens are found on most cells in your body. Your immune system uses HLA to recognize which cells belong in your body and which do not. The closer the match between the patient's HLA and yours, the better for the patient.

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Q: Does race or ethnicity affects donor/patient matching?

Racial and ethnic heritage are very important factors.
Because HLA tissue types are inherited, patients are most likely to match someone of their own race or ethnicity.

Donors of these backgrounds are especially needed:

Black or African American
American Indian or Alaska Native
Asian
Native Hawaiian or other Pacific Islander
Hispanic or Latino
Mixed heritage

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Q: How is the Donation Process?

Steps of Bone Marrow & PBSC Donation

The first step to becoming a bone marrow donor is to join the National Marrow Donor Program (NMDP) Registry. Doctors search our Registry to find donors for their patients who need a transplant. If a doctor selects you as a suitable match, you will be asked to donate either bone marrow or blood cells.

1. Join the Registry
2. Stay committed and available
3. Attend an information session
4. Receive a physical exam
5a. Bone marrow donation - 5a.1. Side effects and recovery
Or
5b. PBSC Donation - 5b.1. Side effects and recovery
6. Follow-up

1. Join the Registry

Anyone age 18 - 60 who meets the health guidelines and is committed to helping any patient in need may join. First, you complete a short health questionnaire and sign a form stating you understand what being on our Registry means. Then you give a small blood sample or swab of cheek cells to be tested for your tissue type, and this information is added to the Registry. (To join now, see Join the Registry.)

2. Stay committed and available

Doctors search our Registry to find a donor whose tissue type matches their patient's. If you are chosen, we will contact you. If you agree to proceed, we will schedule more testing. (For more information, see When You’re Contacted as a Possible Match.)

3. Attend an information session

We will invite you to learn about the donation process, risks and side effects. Please feel free to bring a friend or family member to your information session. We will let you know if the doctor has requested a donation of cells from bone marrow or cells from circulating blood (known as a PBSC donation). Then you can decide whether or not to donate. (For more information, see When You’re Asked to Donate for a Patient.)

4. Receive a physical exam

If you agree to donate, you will have a physical exam to discover if donating would pose any special risks to you or the patient.

5a. Bone marrow donation

Bone marrow donation is a surgical procedure. While you receive anesthesia, doctors use special, hollow needles to withdraw liquid marrow from the back of your pelvic bones. Many donors receive a transfusion of their own previously donated blood.

5a.1. Side effects and recovery

You can expect to feel some soreness in your lower back for a few days or longer. Most donors are back to their normal routine in a few days. Your marrow is completely replaced within four to six weeks.

5b. PBSC Donation

PBSC donation takes place at an aphaeresis center. To increase the number of blood-forming cells in the bloodstream, you will receive daily injections of a drug called filgrastim for five days before the collection. Your blood is then removed through a sterile needle in one arm and passed through a machine that separates out the blood-forming cells. This process is similar to donating plasma. The remaining blood is returned to you.

5b.1. Side effects and recovery

You may experience headache or bone or muscle aches for several days before collection, a side effect of the filgrastim injections. These effects disappear shortly after collection.

6. Follow-up

We will follow up with you until you are able to resume normal activity. After that, we will call you annually for long-term follow up.

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Q: How likely is it that I will donate to someone?

We cannot predict the likelihood because there is so much diversity in tissue types. You may never be identified as a match for someone needing a transplant.
Or if yours is a common tissue type, you may be identified along with a number of other potential donors who match a patient. The patient’s doctor decides which donors will be contacted. If we call to say you are a match for a patient, you may turn out to be the only one who can save the patient’s life.

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Q: What happens if I match a patient?

We will ask you for another blood or cheek swab sample to make sure you are the best possible match for the patient. If the match is confirmed, we will schedule an information session so you can learn more about the donation process, risks and side effects.

Though almost all-patient information is confidential, we can tell you the patient’s age, gender and disease. We can also tell you the type of donation the patient’s doctor has requested—either marrow or cells collected from the blood, called peripheral blood stem cell (PBSC) donation.

If you consent, we will schedule a physical exam for you. The exam helps ensure that donating would not pose any special risks for either you or the patient.
When you are cleared to donate, your marrow or PBSC donation will be scheduled at the nearest NMDP center.

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Q: What are the MEDICAL GUIDE LINES FOR DONORS?

Because it might take several years until you are selected as the best available donor for a patient, when the time comes doctors will review your health history and examine you to make sure it is safe — for both you and the patient — to donate. The guidelines below explain some of the factors that may make you medically ineligible to donate.

1. Age
2. AIDS/HIV
3. Allergies
4. Arthritis
5. Asthma
6. Autoimmune Diseases
7. Back, Neck, Hip and Spine
8. Blood Pressure
9. Cancer
10. Cold/Flu
11.Depression
12. Diabetes
13. Epilepsy
14. Heart Disease
15. Hepatitis
16. Immunizations
17. Lyme Disease
18. Medications
19. Organ or Tissue Transplant
20. Piercing (Body, Skin, Ear)
21. Pregnancy
22. Sexually Transmitted Diseases
23 Tattoos
24. Travel
25.Tuberculosis (TB)
26. Weight

1. Age

You will remain on the Registry until your 61st birthday unless you request to be removed. Age guidelines are not meant to discriminate. They are meant to protect the safety of the donor and provide the best possible outcome for the patient. There is a small increase in the risk of side effects from anesthesia in older donors.

2. AIDS/HIV

If you have been diagnosed with HIV (AIDS) you cannot donate. If you are at risk for the HIV virus, your current medical status will be carefully evaluated and you may not be able to donate for a period of time.

More information about HIV/AIDS and how it is transmitted may be found at the Department of Health and Human Services Centers for Disease Control and Prevention Web site at http://www.cdc.gov/hiv/pubs/faqs.htm.

3. Allergies

If you suffer from common allergies to animals, the environment, or medications, etc., you may be able to donate. If you have serious or life-threatening allergies to medications or latex, your health condition and allergies will need to be carefully evaluated. See Asthma.

4. Arthritis

In general, if you have mild to moderate osteoarthritis or degenerative arthritis, you may be able to donate. Mild to moderate arthritis is defined as having little impact on daily activities, and is relieved by taking occasional medications. If you have arthritis affecting the spine, your condition will need to be carefully evaluated. If you have severe medical arthritic conditions such as rheumatoid, reactive, psoriatic and advanced stages of other types of arthritis, you will not be allowed to donate.

5. Asthma

If you have asthma that is exercise-induced or is well controlled using an inhaler, and have had no attacks requiring oral or intravenous steroids or emergency care in the past five years, you may be able to donate. If you have asthma requiring regular/daily use of oral steroids, you will not be allowed to donate.

6. Autoimmune Diseases

Most diseases which may be defined as auto-immune disorders, such as multiple sclerosis, systemic lupus, chronic fatigue syndrome and fibromyalgia, will prevent you from donating marrow or blood-forming cells. However, if you have a condition such as Hashimoto's or Graves' disease, you may be allowed to donate as long as the disease has been successfully treated and you are medically stable.

7. Back, Neck, Hip, and Spine

Common back problems such as sprains, strains and aches should not interfere with a marrow donation. However, if you have any of the following conditions, you will not be able to donate:

Back surgery in the past 5 years

Herniated, bulging or slipped disc anywhere along your spine

History of a spine fracture

Chronic back pain requiring ongoing medical treatment (including chiropractic care) and/or daily pain medication

Placement of rods for scoliosis

History of a hip fracture and/or repair

If you have significant back problems and/or any questions regarding your medical condition, contact your local donor center.

8. Blood Pressure

If you have elevated blood pressure (hypertension), you may donate if your condition is well controlled by medication or diet and if there is no associated heart disease. See Heart Disease, if applicable.

9. Cancer

If you have a history of pre-cancerous cells, you are able to donate. If you have had cured, local skin cancer (basal cell or squamous cell), you may also be able to donate. If you have healed cervical cancer in situ, breast cancer in situ, or bladder cancer in situ you also will be able to donate. (In situ cancer is diagnosed at a very early stage and is specifically called "in situ.") If you have had any other form of cancer, including melanoma, you will not be able to donate — no matter the length of time since treatment or recovery.

10. Cold/Flu

If you are called to donate marrow or blood-forming cells, you may not be able to donate if you show signs of a serious cold or flu at the time of donation.

11. Depression

If you have a history of depression that is stable and well controlled, you may be able to donate. Contact your local donor center to discuss any other mental health conditions.

12. Diabetes

If your diabetes is well controlled, you may be allowed to donate after careful evaluation of your current health status. In general, if your diabetes is well controlled by either diet or oral medications, you may be able to donate. If you require insulin or if you have diabetes-related serious health issues such as kidney, heart or eye disease, you are not able to donate. If you have questions regarding your diabetes, contact your local donor center.

13. Epilepsy

You may donate if you have well-controlled epilepsy and have had no seizures in the past year.

14. Heart Disease

In general, if you have heart disease you may not donate. This includes a prior heart attack, any history of angioplasty, bypass surgery, heart valve replacement surgery or pacemakers. However, some heart conditions such as well-controlled irregular heartbeats (arrhythmias), or mitral valve prolapse that does not require medication or restrictions, do not prevent donation.

15. Hepatitis

You may donate if you have a history of fully recovered documented Hepatitis A. If you have received a vaccine to prevent hepatitis, you will also be permitted to donate.

If you have any of the following, you would be carefully evaluated to determine if you could donate:

History of or at risk for hepatitis B or C

History of hepatitis or yellow jaundice (on or after age 11) without a known cause

Close or intimate contact with someone with active hepatitis in the past year

If you have questions regarding hepatitis and donation, contact your local donor center.

More information about hepatitis and how it is transmitted may be found at the Department of Health and Human Services Centers for Disease Control and Prevention Web site at http://www.cdc.gov/ncidod/diseases/hepatitis/.

16. Immunizations

If you have received a common immunization you may donate. Receiving an investigational vaccine in the past year, however, must be evaluated. Some immunizations (such as smallpox) will require assessment if you are selected as a potential donor.

17. Lyme disease

If you have fully recovered from Lyme disease you will be able to donate. If you have chronic Lyme disease you will not be able to donate.

18. Medications

Treatment with some medications may impact that person's suitability to donate. Most often it is not the actual drug itself but the condition requiring the medication that would determine your suitability. If you are currently taking medication(s), you may want to contact your local donor center to discuss the medication(s) and/or underlying condition.

19. Organ or Tissue Transplant

If you have received human tissues, such as bone (including bone powder for dental procedures), ligaments, tendons, skin and corneas, you may be allowed to donate, depending on the reason for the procedure. If you received any of the following types of transplants you will not be able to donate: human organs such as heart, lung, liver or kidney, marrow or blood-forming cells dura materxenotransplant (live tissues from animals)

20.Piercing (Body, Skin, Ear)

If you have had ear or body piercing in the past year you may be able to donate if non-shared instruments were used. The use of shared instruments would require evaluation and may prevent donation for 12 months from the date of the piercing.

21. Pregnancy

Marrow or blood-forming cells cannot be collected at any time during pregnancy. If you are pregnant (or attempting to become pregnant) you must be temporarily deferred until fully recovered from the delivery.

If you are currently pregnant or planning on becoming pregnant, you may want to consider donating umbilical cord blood after your baby is born. To see if this is an option at your hospital, see Where to Donate Cord Blood.

22. Sexually Transmitted Diseases

If you have or have had a sexually transmitted disease such as herpes, HPV, Chlamydia or syphilis you may be able to donate. Your case will be evaluated on an individual basis.

23. Tattoos

If you received a tattoo in the past year, evaluation will be necessary. You may not be able to donate for 12 months from the date of the tattoo application.

24. Travel

You may be able to donate regardless of where you have traveled. If you are selected as a potential donor, recent travel to areas at risk for infections such as malaria or mad-cow disease will be evaluated.

25.Tuberculosis (TB)

You may be able to donate if you have completed treatment for TB, if it has been more than 2 years, and you have a clear chest x-ray. You may also donate if you have a history of a positive Mantoux (PPD). If you have had active pulmonary tuberculosis (TB) within the last two years, your current health status would require careful evaluation.

26. Weight

A formula that measures body fat — called Body Mass Index (BMI) — is used to evaluate weight when determining donor suitability. You may not be able to donate if your BMI (both underweight and overweight) presents a risk to your safety. See Donor Weight Guidelines for more information.

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Q: Who pays for donation expenses?

Donors never pay for donating, and are never paid to donate.

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Q: Could I change my mind about donating?

You have the right to change your mind 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—even life- threatening—delays for the patient.
Luke (left) was almost two years old when Randy (right)

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Q: What is the donation procedure?

Adult donors undergo one of two procedures:

Marrow donation
PBSC donation

Risks and side effects depend on the procedure used.

Marrow donation

This is a surgical outpatient procedure. While donors receive anesthesia, doctors use needles to withdraw liquid marrow from the back of the pelvic bone. The donor’s marrow completely replaces itself within four to six weeks. After donation, donors can expect to feel some soreness in the lower back for a few days or longer. Most donors are back to their usual routine in a few days.

PBSC donation

This is a non-surgical outpatient procedure. Donors receive daily injections of a drug called filgrastim for five days before the collection, to increase the number of blood-forming cells in the bloodstream. Then through a process called aphaeresis, a donor’s blood is removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to the donor through the other arm. Donors may experience headache or bone or muscle aches for several days before collection. These are side effects of the filgrastim injections and disappear shortly after donation.

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Q: How will I know which donation procedure will be used?

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.

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Q: What happens after I donate?

Your NMDP donor center coordinator will follow up with you until you are able to resume normal activity.

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Q: What is the risk to my recipient?

While transplantation is a life-saving therapy, not all recipients survive. Sometimes their body cannot withstand pre-transplant chemotherapy and radiation. Sometimes patient complications occur after the transplant. But for many recipients, a transplant is successful or the best and only option. They would almost certainly die without it.

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Q: Will I get patient updates or meet my recipient?

Your recipient’s transplant center may provide up to three updates within the first year after transplant. Some transplant centers do not provide updates. During the first year after transplant, some centers allow anonymous communication between you and your recipient. Some centers allow direct contact between donors and recipients in one or more years after the transplant, if both you and your recipient agree.

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Q: How often should I update my information?

If you match a patient, we will need to find you quickly. Updating your contact information is crucial! Contact us if:

Your phone number, name, or address has changed
You have any major changes to your health
You want to be removed from the Registry

Just log on to icla.org/update or call us at our toll free number 1.866.FDN.ICLA

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Q: Am I in the Registry?

To find out if you have joined National Marrow Donor Program (NMDP) Donor Registry, please click here. (Link to MDP website to check if in the registry)

If you are not in the NMDP Registry yet. Please contact us to complete your application process.

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Q: History of Marrow and Blood Cell Transplants

The First Successful Transplant

Thomas in Cooperstown, N.Y., performed the first successful transplant in the late 1950s. The transplant involved identical twins, one of which had leukemia. Because identical twins share the same genetic make-up, transplants between twins avoid the problems associated with non-twin transplants, such as graft-vs. -Host disease. GVHD occurs when the transplanted cells (the graft) attack the patient (the host) as they would a foreign object or infection. In 1975, Thomas moved his research to Fred Hutchinson Cancer Research Center, where much of the developmental work on bone marrow and blood stem-cell transplantation has been done. He received the Nobel Prize in physiology or medicine in 1990, along with Dr. Joseph E. Murray, who pioneered kidney transplantation.

The First Allogeneic Transplant

It wasn't until 1968, in Minnesota, that the first successful non-twin (allogeneic) transplant was performed. In this case, the donor was a sibling of the patient. By this time, it was known that a key to a successful transplant was a specific type of genetic matching (known as HLA) of the donor to the patient. Because siblings receive DNA from the same parents, a sibling is the most likely person to be a good match. Having a closely matched donor can help avoid graft-vs. -Host disease. However, many people do not have a sibling who is HLA-matched. In this situation, an HLA-matched unrelated donor can be used.

The First Unrelated Transplant

The first successful unrelated donor transplant took place in 1973 in New York when a young boy with a genetic immunodeficiency disorder received multiple marrow transplants from a donor identified as a match through a blood bank in Denmark. The first successful unrelated donor transplant for a patient with leukemia took place in 1979 at the Hutchinson Center.

Donor Matching Starts

In 1979, Laura Graves, a patient with leukemia, was referred to the Hutchinson Center. Laura did not have a matched donor in her family, so Center staff searched through their database of platelet donors in an attempt to find a match. Luckily, one of the laboratory staff turned out to be a good match. Laura's transplant was successful, and she did not develop graft-vs. -Host disease. Although Laura died two years later of recurrent leukemia, the Graves family continued to lead an effort to establish a national registry of people volunteering to be bone-marrow donors. The National Bone Marrow Donor Registry was federally funded in 1986, and in 1987 the first donor match was made. In 1988, the name was changed to the National Marrow Donor Registry (NMDP). The NMDP now includes a network of donor registries in 30 countries. Its database contains more than 5.5 million donors and facilitates an average of 200 transplants each month.

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Q: The Unrelated Donor Search Process

Any physician can investigate the potential hematopoietic cell transplant options for a patient through the National Marrow Donor Program (NMDP). A preliminary search for potentially matched donors and umbilical cord blood units can be done early, while developing a treatment plan or initiating other treatment.

The search process affects patient outcomes
An efficient and appropriately timed donor search process improves the chances that a donor or cord blood unit for transplant is available when the therapy has the best chance to succeed. To enable a patient to proceed to transplant at the optimal time, a patient's physician can:

Refer the patient to a transplant center for consultation before the need for transplant becomes urgent — see Recommended Timing for Transplant Consultation.

Begin an initial search for an unrelated donor or cord blood unit early to allow time for more challenging searches. (The median search time for a marrow or peripheral blood stem cell (PBSC) donor is 51 days, and less than 2 weeks for a cord blood unit.)

Maintain communication with the transplant center about patient status and treatment before the transplant.

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Q: Steps of the Search Process

A bone marrow or cord blood transplant (also called a BMT) that uses blood-forming cells from a donor or cord blood unit is called an allogeneic transplant. If you need an allogeneic transplant, your doctor will look first for a donor in your family. Each brother and sister who has the same parents as you has a 25% chance of matching you.
However, 70% of patients do not have a suitable donor in their family. If you do not have a donor in your family, your doctor can search the National Marrow Donor Program (NMDP) Registry for an unrelated donor or cord blood unit for you.

1. Referring the patient to an NMDP transplant center
2. Tissue typing the patient
3. Tissue typing family members
4. Initiating a free preliminary search
5. Identifying a donor or cord blood unit for transplant
6. Scheduling a transplant and collecting the cells for transplant

1. Referring the patient to an NMDP transplant center

Consultation with a transplant physician and/or patient referral to a transplant center is recommended for patients diagnosed with a disease for which transplant is a potential treatment. Early referral, even as other treatment is planned or initiated, can improve the chances of success if transplant is required.

If an unrelated donor or cord blood unit from the NMDP Registry will be needed, The Icla da Silva Foundation can refer the patient to a transplant center in the NMDP Network. The Icla da Silva Foundation specialists can find a transplant centers that meet and maintain NMDP participation criteria for quality and experience with allogeneic transplant.

Referring physicians are welcome to consult by telephone with transplant physicians about a patient's treatment options or the best time for referral. The Icla da Silva Foundation Office can assist with locating a transplant center. Call 1.866.FDN.ICLA (toll free in the United States) or 1.212.593.1807.

Timing: Preferably soon after diagnosis, depending on a patient's diagnosis and prognostic factors. The treating physician may carry out steps 2 - 4 below. An NMDP transplant center is responsible for selecting the donor or cord blood unit (step 5).

Responsibility: Referring physician.

Further information please Call 1.866.FDN.ICLA (toll free in the United States) or 1.212.593.1807.

2. Tissue typing the patient

The NMDP recommends that a patient's human leukocyte antigen (HLA) typing be performed at high resolution (results reported at 4 digits) for HLA-A, -B, -C and -DR loci using molecular (DNA) testing. High-resolution typing of the patient from the beginning is the key to an effective search process. Because the search strategy is based on complete patient information, beginning with high resolution patient typing not only enables a transplant center to select the best-matched donor or cord blood unit, but also can reduce total search time and costs.

Timing: Soon after diagnosis.

Responsibility: Either the transplant center or the referring physician. It may be more efficient and less costly if the transplant center performs the typing, because:

To ensure quality and consistency of results, the NMDP and nearly all transplant centers require the patient and potential donor or cord blood unit to be tested in the same laboratory. Some insurance companies cover the costs of tissue typing only when performed at a transplant center.

Further information please Call 1.866.FDN.ICLA (toll free in the United States) or 1.212.593.1807.

3. Tissue typing family members

The patient's full biological siblings should be tissue typed to identify potential related donors. In addition, for some patients, tissue typing the patient's parents and/or children can provide additional information that can be useful in developing a donor search strategy.

Timing: At the same time the patient is typed.

Responsibility: Either the referring physician or the transplant center. HLA expertise (available at many transplant centers and from the NMDP) is critical to ensure potential donors in the patient's family are not overlooked.

To request an HLA consultation from the NMDP, please contact The Icla da Silva Foundation Office calling 1.866.FDN.ICLA (toll free in the United States) or 1.212.593.1807.

4. Initiating a free preliminary search

Any physician can complete a Preliminary Search Request Form to find out about potential marrow or peripheral blood stem cell (PBSC) donors or cord blood units on the NMDP Registry. A preliminary search is a single "snapshot" of potential matches at a given time and does not include contact with or additional testing of a potential donor. Early preliminary searches can indicate how challenging the patient's search for a donor or cord blood unit may be and help in shaping the treatment plan.

When the preliminary search yields limited results, physicians are encouraged to consult a transplant physician or coordinator to discuss transplant options for the patient. The Icla da Silva Foundation team may be able to recommend a search strategy that will yield potential donors. Please contact The Icla da Silva Foundation Office calling 1.866.FDN.ICLA (toll free in the United States) or 1.212.593.1807.

If the preliminary search yields a list of potential donors or cord blood units, a formal search (step 5) is still necessary to select the best match as well as confirm availability of potential donors.

Timing: Can be done as soon as patient's tissue typing is complete, and can be repeated at any time. Search results are available to the requesting physician the next business day after the NMDP receives the request.

Responsibility: Either the referring physician or transplant center. If the patient is referred for transplant, the transplant center will do its own preliminary search. To initiate a preliminary search, complete a Preliminary Search Request Form.

Patients and their families should be reminded that locating a donor or cord blood unit is the transplant center's responsibility. Though patient-sponsored donor drives may benefit other transplant patients over time, it is extremely unlikely that a patient will find a matched donor through his or her own efforts.

5. Identifying a donor or cord blood unit for transplant

To identify a donor or cord blood unit for the patient, an NMDP transplant center requests a formal search. The formal search begins when an NMDP transplant center selects potential donors and/or cord blood units for testing on behalf of a patient. Further testing is needed to:

Determine whether potential donors or cord blood units are matched at the level of resolution and at all HLA loci required by the transplant center's protocol.

Confirm the original typing. For a potential marrow or PBSC donor, this requires a fresh blood sample.

Potential marrow or PBSC donors are also educated about the donation process, screened for any health problems and asked to confirm their availability and commitment to donating. The NMDP process of identifying an unrelated donor or cord blood unit is designed to provide a high quality of donated hematopoietic cells for transplant with minimal risk to the patient or donor.

Timing: Determined by the transplant physician in consultation with the referring physician based on the patient's diagnosis and treatment options. The time needed for a formal search varies greatly, depending on both patient and donor factors.

For a marrow or PBSC donor, the median time from initiation of the formal search to the request of a donor is 51 days.

For a cord blood unit, the average time from initiation of the formal search to the request for a cord blood unit is less than 2 weeks. The unit is typically shipped within 24 hours after being requested.

Factors that Affect Time to Find a Donor/Cord Blood Unit

When and whether transplant becomes a potential treatment. (For example, physicians may initiate a donor search as a backup plan for a CML patient being treated with imatinib.)

Urgency of patient's condition.

Quality of the patient's initial HLA typing — high resolution typing enables a more efficient search.

Challenge of the search — rarity of the patient's HLA type and the strategy for requesting further donor testing.

Whether cord blood is an option.

Scheduling of donor appointments for testing, education and physical exams.

Donors who are either permanently or temporarily unavailable. Although the majority of donors on the Registry are committed to donating if called upon, their participation is voluntary. Reasons donors could be unavailable include changes in health, personal situations, changes of heart about their commitment or changes in address that have made them difficult to locate.

Responsibility: The formal search is requested by an NMDP transplant center, which meets NMDP participation criteria for transplant experience and quality. The NMDP manages the search process and provides HLA expertise as well as support services for patients and their physicians throughout the process.

Further information: NMDP Transplant Centers, Key Roles in the Search Process (PDF), Likelihood of Finding an Unrelated Donor or Cord Blood Unit

6. Scheduling a transplant and collecting the cells for transplant

To facilitate the transplant, the The Icla da Silva through the NMDP:

Ensures the quality of the cells provided for transplant through a complex system of checks and balances and the standards it sets for its Network centers

Works with the transplant center and donor center or cord blood bank to establish a transplant date.

For marrow or PBSC transplants, manages the logistics of scheduling the collection and arranges transportation of the cells by courier to the transplant center

For cord blood transplants, arranges shipment of the cord blood unit to the transplant center

Timing: Scheduling of the transplant depends on the patient's condition and donor availability. Courier to the transplant center transports donated marrow or PBSC within 48 hours of donation. Cord blood units are typically shipped within 24 hours after being requested.

Responsibility: NMDP.

Selecting a Transplant Center

If you need a bone marrow or cord blood transplant and do not have a matching donor in your family, your doctor can search for an adult donor or cord blood unit for you on the National Marrow Donor Program (NMDP) Registry.

There are more than 120 NMDP transplant centers in the United States where you may be able to receive a transplant from an unrelated donor or cord blood unit on the NMDP Registry. NMDP compiles detailed information to help you and your doctors choose the transplant center that is best for you — see U.S. NMDP transplant centers.

There are also many international NMDP transplant centers. For more information please contact The Icla da Silva Foundation Office calling 1.866.FDN.ICLA (toll free in the United States) or 1.212.593.1807.

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Q: Transplant Process

Transplant Process
The Donor Selection & Transplant Process

If your doctor recommends a bone marrow or cord blood transplant (also called a BMT), learning about the donor selection and transplant process can help you make informed choices about your health care.

Searching for an unrelated donor or cord blood unit
If you need an allogeneic transplant (which uses donated cells from a family member, unrelated donor or cord blood unit), and do not have a suitable donor in your family, your transplant center can search the National Marrow Donor Program (NMDP) Registry for an unrelated donor or cord blood unit for you.

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Q: Steps to Donation

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Q: Search Process

1. Your doctor requests a free preliminary search
2. Preliminary search results are interpreted
3. Your doctor refers you to an NMDP transplant center
4. Your transplant doctor starts a formal search
5. Your transplant doctor identifies a donor or cord blood unit
6. Cells are collected and transported to the transplant center

1. Your doctor requests a free preliminary search

Any doctor can ask for a preliminary search of the NMDP Registry. A preliminary search is a one-time snapshot of potential donors and cord blood units on the NMDP Registry that may match you. Your primary doctor can do a preliminary search early while planning your treatment. If you have already been referred to a transplant center, your transplant doctor will do the preliminary search.

When your doctor submits a preliminary search request to the NMDP, he or she will include your human leukocyte antigen (HLA) tissue type. The HLA tissue type is used to match you to potential donors or cord blood units.

A preliminary search of the NMDP Registry is free. Your doctor can submit this request through this Web site. A preliminary search for an unrelated donor can be done while your family is being tested as possible donors for you.

2. Preliminary search results are interpreted

The NMDP sends preliminary search results to your doctor within one working day after he or she has submitted the request. The results show a list of donors and cord blood units that may be a suitable match for you. These early results may show many or few potential matches. Further testing is needed to find out which, if any, of the potential donors or cord blood units are suitable for you.

If your primary doctor does the preliminary search, it is important for him or her to review the results with a transplant doctor who has experience in the donor search process. Your doctor can also talk to HLA experts at a transplant center or the NMDP for help interpreting the search results.

3. Your doctor refers you to an NMDP transplant center

A transplant doctor does the next steps of the search process. If your primary doctor has not already referred you to a transplant doctor, he or she will do so now. If you need an unrelated donor or cord blood unit from the NMDP Registry, you will need to go to a transplant center in the NMDP Network. NMDP transplant centers are required to meet NMDP standards for quality and transplant experience.

The transplant team will evaluate your health, disease stage and other factors to decide if transplant is a good treatment option for you. The transplant team will also tell you more about the transplant process, including how they will search for your donor or cord blood unit and the costs involved. Most transplant centers require approval from your insurance company before starting a formal search. Most transplant centers also require you to identify a caregiver who will help care for you during your transplant and recovery.

4. Your transplant doctor starts a formal search

Further testing is needed to find out whether potential donors or cord blood units listed on the preliminary search results are suitable matches for you. This testing is done through a formal search. NMDP transplant centers can do a formal search by requesting further testing of potential donors or cord blood units on the NMDP Registry. The decision to do a formal search is a formal agreement between you and the transplant center. Because donors may be contacted and lab tests done, there are costs for a formal search.

Some insurance companies cover some or all search costs and others cover none. The transplant costs your insurance covers may depend on your disease, treatment plan and other factors.

A transplant center will test several potential donors or cord blood units to find the best one for you. If an adult donor appears to be a good match, he or she must be contacted to be sure he or she is healthy, able and willing to donate. If one or more cord blood units are suitable match for you, your doctor will also look at the number of blood-forming cells in the cord blood units. The number of blood-forming cells in a transplant needs to be suitable for the size of the patient — larger patients need more cells.

It is your transplant center's job to find a donor or cord blood unit for you. Finding a donor is not your responsibility. Your transplant team will use their experience and research findings to select potential donors to test further. The goal is to find the best donor or cord blood unit for you in the shortest amount of time. It can take as little as a few weeks to as long as two months or more to find a donor or cord blood unit. Sometimes no suitable donor or cord blood unit can be found. If that happens, your doctor will look at other treatment options. These options might include using a partly matched family member (haploidentical donor).

Your treatment during the search

Usually while your transplant center searches for your donor or cord blood unit, you will return to your primary doctor for care. You and your primary doctor and transplant doctor need to keep in contact with each other. If your health or disease changes while you are waiting for a donor to be found or your transplant to take place, you and your primary doctor should tell your transplant center. Your doctors may decide it is in your best interest to delay the transplant. It is important for you to be as healthy as possible when you have your transplant.

5. Your transplant doctor identifies a donor or cord blood unit

When your transplant doctor selects a suitable adult donor, your transplant center will retest the donor's HLA typing to confirm that it matches yours. The selected donor will have more blood tests and a physical exam to ensure that he or she does not have an infection or disease that could be passed on to you through the transplant. The tests also make sure donating will not be too risky for the donor.

Your transplant doctor will also choose whether to ask for marrow or peripheral (circulating) blood cells (also called PBSC) from the donor. Doctors are still trying to find out more about whether one source of cells leads to better transplant results than the other.

The NMDP will explain the donation process to the donor. The donor must understand what is involved before he or she agrees to donate.

If your transplant doctor chooses cord blood as the best source of cells for you, your transplant center will test a sample of blood stored with the cord blood unit to confirm that it matches you. Screening for infectious diseases and other medical problems is done before the cord blood units are stored.

6. Cells are collected and transported to the transplant center

For adult donors, the NMDP works with your transplant center and your donor's donor center to schedule a collection date. The date depends on your health and when you will be ready for transplant as well as on the donor's schedule. On the scheduled date, the marrow or blood cells are collected. A trained courier brings them to your transplant center within 24-48 hours after they have been collected, and you receive your new cells.

If your transplant doctor chooses cord blood for your transplant, the transplant center will ask for the cord blood unit to be shipped. Cord blood is stored frozen and can be delivered to your transplant center within 24 hours. The NMDP will arrange the shipment of the cord blood to your transplant center. When you have finished your pre-transplant treatment (preparative regimen) and are ready for transplant, the cord blood is thawed and you receive your new cells.

Patient and donor confidentiality

You will not know who your donor is at the time of your transplant. The NMDP follows strict confidentiality standards to protect the privacy of both you and your donor. According to these standards, you and your donor cannot learn each other's identities for at least one year after your transplant. Some centers do not ever allow you and your donor to learn each other's identities. If you have a cord blood transplant, you will never learn who donated the cord blood.

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Q: Blood & Marrow

Patient Frequently Asked Questions

This page has answers to questions many patients ask about bone marrow and cord blood transplants (also called BMT). If our website can answer your doubts please contact us with your questions at info@icla.org.

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Q: Leukemia & Lymphoma

Learning More about Your Disease

Leukemia is the general name for four different types of blood cancers. The ways that individuals with leukemia are affected and treated and how the disease progresses are different from one type of leukemia to the other.

This page provides an overview of the different types of leukemia. For detailed information about each disease click on the names listed below.

If you are diagnosed with leukemia, a bone marrow or cord blood transplant (also called a BMT) may be a treatment option for you. A transplant may also be a treatment option for certain immune system and genetic disorders. The diseases listed below are those that may be treated by a bone marrow or cord blood transplant. The list includes diagnoses for which transplant is a standard treatment as well as diagnoses for which the role of transplant is a newer option. To learn more about your disease here or through disease-specific organizations.

To learn more about childhood leukemias and other childhood cancers, visit the National Cancer Institute Web site

The Icla da Silva Foundation offers free, confidential support services to patients, families and their caregivers. Trained case managers are available to help you find the information you need to make informed decisions about your treatments for your disease. OPA offers printed information and can answer questions about marrow and cord blood transplants and diseases that may be treated with transplants.

To contact The Icla da Silva Foundation call toll-free in the United States. The Icla da Silva staff are available Monday - Friday, 9 a.m. to 5 p.m. Central time. You can also send an e-mail message to info@icla.org

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Q: Cancer

What is Cancer?

Cancer develops when cells in a part of the body begin to grow out of control. Although there are many kinds of cancer, they all start because of out-of-control growth of abnormal cells.

Normal body cells grow, divide, and die in an orderly fashion. During the early years of a person's life, normal cells divide more rapidly until the person becomes an adult. After that, cells in most parts of the body divide only to replace worn-out or dying cells and to repair injuries.

Because cancer cells continue to grow and divide, they are different from normal cells. Instead of dying, they outlive normal cells and continue to form new abnormal cells.

Cancer cells develop because of damage to DNA. This substance is in every cell and directs all activities. Most of the time when DNA becomes damaged the body is able to repair it. In cancer cells, the damaged DNA is not repaired. People can inherit damaged DNA, which accounts for inherited cancers. More often, though, a person's DNA becomes damaged by exposure to something in the environment, like smoking.

Cancer usually forms as a tumor. Some cancers, like leukemia, do not form tumors. Instead, these cancer cells involve the blood and blood-forming organs and circulate through other tissues where they grow.

Often, cancer cells travel to other parts of the body where they begin to grow and replace normal tissue. This process is called metastasis. Regardless of where a cancer may spread, however, it is always named for the place it began. For instance, breast cancer that spreads to the liver is still called breast cancer, not liver cancer.

Not all tumors are cancerous. Benign (no cancerous) tumors do not spread (metastasize) to other parts of the body and, with very rare exceptions, are not life threatening.

Different types of cancer can behave very differently. For example, lung cancer and breast cancer are very different diseases. They grow at different rates and respond to different treatments. That is why people with cancer need treatment that is aimed at their particular kind of cancer.

Cancer is the second leading cause of death in the United States. Half of all men and one third of all women in the United States will develop cancer during their lifetimes. Today, millions of people are living with cancer or have had cancer. The risk of developing most types of cancer can be reduced by changes in a person's lifestyle, for example, by quitting smoking and eating a better diet. The sooner a cancer is found and treatment begins, the better are the chances for living for many years. Read More

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Q: Myeloma

What Is Myeloma?

Myeloma is literally an "oma," or tumor, involving the "myelo," or blood producing cells in the bone marrow. The cells that are affected are plasma cells (a type of white blood cell), which are our antibody- (immunoglobulin-) producing cells. A malignant or cancerous plasma cell is called a myeloma cell. Myeloma is called "multiple" since there are frequently multiple patches or areas in the bones where tumors or lesions have developed. A single lesion is called a solitary plasmacytoma.  

Myeloma affects the places where bone marrow is normally active in an adult. This marrow is in the hollow area within the bones of the spine, skull, and pelvic bones, the rib cage, and the areas around the shoulders and hips. The areas usually not affected are the extremities: that is the hands, feet, and lower arm/leg regions. This is very important since the function of these critical areas is usually fully retained.  

Myeloma can be discovered at a precancerous stage. In some cases the myeloma cells build up very slowly in the bone marrow. The very earliest stage is called MGUS. This is not a cancer, but a condition called Monoclonal Gammopathy of Undetermined Significance. In MGUS, the myeloma cells constitute fewer than 10% of the bone marrow cells. The risk of transition from MGUS to active myeloma is very low: only a 1% chance each year of follow-up. Even if the myeloma cells are at a higher level of 10-30% of the total bone marrow, the growth rate can be very slow and represent indolent/smoldering or asymptomatic myeloma. Both MGUS and indolent myeloma can change very slowly over a period of years and do not require active treatment. It is very important to establish the correct diagnosis distinguishing MGUS and indolent myeloma from active or symptomatic myeloma, which does require treatment. Read More

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Q: Anemia

What Is Anemia?

Anemia (uh-NEE-me-eh) is a condition in which a person’s blood has a lower than normal number of red blood cells (RBCs), or the RBCs doesn't have enough hemoglobin (HEE-muh-glow-bin). Hemoglobin—an iron-rich protein that gives the red color to blood—carries oxygen from the lungs to the rest of the body. In people with anemia, the blood does not carry enough oxygen to the rest of the body. As a result, people with anemia feel tired, along with other symptoms, because their bodies are not receiving enough oxygen. In severe or prolonged cases of anemia, the lack of oxygen in the blood can cause serious and sometimes fatal damage to the heart and other organs of the body.

RBCs also are called erythrocytes (eh-RITH-ro-sites). RBCs are disc-shaped and look like doughnuts without a hole in the center. They are produced continually in the spongy marrow inside the large bones of the body and normally last 120 days. RBCs’ main role is to carry oxygen, but they also remove carbon dioxide (a waste product) from cells and carry it to the lungs to be exhaled. White blood cells and platelets are the two other kinds of blood cells. White blood cells help fight infections. Platelets help blood to clot. In some kinds of anemia, there are low amounts of all three types of blood cells.

Outlook

Women and people with chronic diseases are at greater risk for anemia. Many types of anemia can be mild, short-lived, and easily treated. Some forms of anemia can be prevented with a healthy diet, and other forms can be treated with diet supplements.

Certain types of anemia may be severe, long lasting, and life threatening if not diagnosed and treated. People who have symptoms of anemia should see their doctor to find out if they have the condition, its cause and severity, and how to treat it. Read More

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Q: Support

The Icla da Silva Foundation offers support from diagnosis through patient and families survivorship. Our specialists can answer questions about bone marrow and cord blood transplant, meanwhile helping your decisions about treatment options. Through Patient and family support services our case managers are available to provide one-to-one counseling on transplant-related topics and direct patients to other resources.

Our bilingual case managers are available Monday - Friday, 8 a.m. to 5 p.m. To:

Facilitate patients - doctors discussions
Help patients to choose the right transplant center
Help patients and families to understand care giving
Educate patients on managing financial or insurance matters
Prepare patients for life after transplant.
Send you educational material, like free booklets, CDs and DVDs

CALL US NOW

Toll free number 1.866.FDN.ICLA (toll free in the United States) or 1.212.593.1807.

You can also email us at info@icla.org.

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