A Bone Marrow Transplant: the Donating Process

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Cheek Swab Testing

Joining a Bone Marrow Registry

A potential donor’s initial contact with Ezer Mizion’s Bone Marrow Registry begins with a cheek swab sample. This will enable the registry to make a preliminary determination regarding the compatibility between the donor and a patient in need of a bone marrow transplant. His genetic information will remain on the database for decades, available for any patient whose DNA matches his. Some potential donors are contacted for further testing within a year of registration, others not for 10-20 years or not at all.

Once it had been determined that a donor is a possible genetic match, things move quickly. When a patient is in need of a bone marrow transplant, time is of essence. Further testing must be done and it cannot wait. Should the patient’s condition deteriorate, the transplant, his last chance to survive, may no longer be medically feasible.

Often, if a great deal of time has elapsed since registration, the contact info is no longer valid. The internet is then surfed until the donor is located. No effort is too much when a human life is involved.

The donor is then asked if he would like to donate. The procedure is entirely voluntary and the donor has the right to refuse at the outset or at any time. No persuasion is used leaving the decision completely up to the potential donor.

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Stem Cells

In most cases, it is a stem cell transplant rather than a bone marrow transplant that takes place. This is a much simpler procedure which results in a higher percentage of potential donors agreeing to go ahead.

What do we mean by genetic match?

Human leukocyte antigens (HLA) are proteins that are present in most body cells. These antigens help identify tissue types. The immune system utilizes HLA antigens in order to identify the cells that belong in your body and the cells that do not belong in your body. If the immune system detects cells that do not belong on your body, it will reject them, thus resulting in a failed transplant.

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Blood Samples Being Tested

HLA proteins are important in determining the compatibility of donors and patients for a stem cell transplant. In order to match tissue types for a transplant, the compatibility of ten of the donor and patient antigens are checked (generally, A, DR, C, B, and DQ).

Usually, a compatibility of at least 8 out of 10 antigens is necessary in order to approve a donor for a transplant.

In addition to the basic testing, Ezer Mizion’s Bone Marrow Registry is committed to supporting research to enhance results of transplants and the donor may be asked to participate in this research as part of the donation process. The decision whether to participate in the research is up to the donor.

Timing

Three weeks to several months may elapse until the patient’s attending doctor will come to a decision. The Registry staff will call the donor to inform him of the results of the compatibility confirmatory testing.

The donor may be asked to donate immediately or to wait until the patient is ready. Each case is different; the timing of the donation will be based upon what is best for the donor and for the patient. After a date has been set, the preparatory stage will continue.

At the preparatory stage before the donation, the donor will speak with the Registry staff in order to learn about the process and the risks and side effects involved in giving a donation. If he chooses to donate, he will undergo blood tests and a physical examination by a physician. A detailed questionnaire is also required in addition to a signed consent form.

 

Increasing Stem Cells in the Donor

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Donating Stem Cells

On the day of the transplant, blood is taken from the donor, much the same as if he were donating blood. The stem cells are harvested from the whole blood and the remainder returned to the donor through the second arm. The process is repeated for several hours until the required amount of stem cells (depending on the size of the patient) is obtained.  So that a large amount of stem cells be available, the donor receives neupogen injections several days before the transplant to stimulate the release of stem cells from the bone marrow into the blood stream.

 

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Life-saving bag of stem cells

The Transplant

When the required amount has been accumulated, the stem cells are then infused into the body of the patient through a central line, a painless procedure. Within 2 days to several weeks, the new cells will begin to produce red cells, white cells and platelets in place of the defective ones, thus producing a cure for many life-threatening diseases.

Bone Marrow Registry Anonymity

By international law, a registry must maintain confidentiality and strict non-disclosure of donor and patient information. This policy is for the protection of both the donor and the patient.

In order to maintain confidentiality of information, donors and patients receive an identification number. These ID numbers enable doctors to share important medical information without using names or addresses. This high level of privacy is maintained throughout the stages of the process.

Patients are informed only of the age and gender of their donor. Donors are told only of the age, gender, and disease of the recipient patient.

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You saved my life!
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You saved my life!

The patient’s identity may be revealed only after at least a year has elapsed from the date of donation and the patient has expressed his agreement to disclosure and a meeting. This meeting understandably will be highly emotional with the patient and his family trying to express the unexpressable: You saved my life!

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Because of You My Children Have an Abba (Father)

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Success of a bone marrow transplant hinges on genetic matching

Isn’t every child supposed to have both an Abba and an Ima (father and mother)? Two year old Naomi and her baby brother almost didn’t. Now their mother stood there in tears of joy when she met Aryeh. “Because of you, my children have an Abba,” she cried over and over again.

Who is Aryeh? We’ll let Abba tell that story. Continue reading Because of You My Children Have an Abba (Father)

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Two Grandpas: Their Sole Chance of Survival Was a Bone Marrow Transplant

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Would there be a genetic match for Betzalel?

At 61, Betzalel N. was just beginning grandfatherhood. He had three children and several tiny grandchildren. His drawer was filled with lollipops and his mind was filled with future plans: trips to the zoo with Grandpa, graduations, dancing at their weddings…until the day it all came crashing down. Leukemia. There would be no holding the hand of a grandchild as she gingerly feeds a baby goat at the zoo. Weddings would take place but there would be no glowing Zeidy (grandfather) to dance with the chassan (groom). It was over. He’d be gone. The doctors had tried everything and there was only one procedure left. A bone marrow transplant. If a genetically matching donor could be found somewhere in the world, he’d have a chance. If not, … Continue reading Two Grandpas: Their Sole Chance of Survival Was a Bone Marrow Transplant

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Because of You!

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June 2017 – BMDR ACTIVITY SUMMARY
22 lifesaving transplants
17 from personalized donor pools- see below
2,513 total transplants
858,125 members in registry Continue reading Because of You!

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What Are Bone Marrow Transplants?

 

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Donating Stem Cells

OUR AMAZING 21ST CENTURY

Medical science has made great strides with illnesses that, not too long ago, afforded very little hope for the patient. In some cases, even the ‘man on the street’ has become part of the remedy.   Bone marrow transplants are a case in point. Bone marrow transplants have become the cure for a wide variety of life-threatening diseases ranging from many types of cancer to immunodeficiency syndromes and anemias.

WHAT IS BONE MARROW?

Bone marrow is the soft tissue inside a bone which produces the body’s blood cells (red cells, white cells and platelets).

WHAT ARE STEM CELLS?

Stem cells are immature blood cells produced in the bone marrow. They can develop into red blood cells, white blood cells, and platelets.

HOW DOES A TRANSPLANT EFFECT A CURE?

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stem cells

A transplant donated by a healthy person can help patients with serious diseases live longer and healthier lives. If the bone marrow is damaged, the new cells produced will also be damaged. A replacement of undamaged cells will enable the body to produce healthy blood cells, thus creating the cure.

WHAT DISEASES HAVE BEEN FOUND TO BENEFIT FROM A BONE MARROW TRANSPLANT?

AML, ALL, CLL, CML, Juvenile myelomonocytic leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, severe aplastic anemia, Fanconi anemia, Paroxysmal nocturnal hemoglobinuria, Pure red cell aplasia, Amegakaryocytosis/congenital thrombocytopenia, SCID, Beta thalassemia major, Sickle Cell Disease, Krabbe disease, Hurler syndrome, MLD, ALD

EXACTLY WHAT IS TRANSPLANTED?

Three sources of cells used for transplants are:

  • Bone marrow (BM)
  • Stem cells from peripheral blood (PBSC)
  • Blood collected from the newborn’s umbilical cord after its birth (CB)

The doctor doing the transplant chooses the source most appropriate for the patient, taking into consideration the needs and preferences of the donor.

WHAT IS THE DIFFERENCE BETWEEN AUTOLOGOUS AND ALLOGENEIC STEM CELL TRANSPLANTS?

An autologous transplant involves only the patient’s own stem cells which are then transplanted back into the patient several days later after high doses of chemo and sometimes radiation. An allogeneic stem cell transplant is done using cells from another donor.

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DNA

WHY CAN’T ANY KINDLY PERSON DONATE HIS MARROW?

Human leukocyte antigens (HLA) are proteins that are present in most body cells. These antigens help identify tissue types. The immune system utilizes HLA antigens in order to identify the cells that belong in the body and the cells that do not belong in the body. If the system recognizes cells very different from itself, it will reject them.

In one’s tissue-typing system, there are two groups of antigens. One group is inherited from the  mother and the other group from the father.

HLA proteins are important in determining the compatibility of donors and patients for a stem cell transplant. In order to match tissue types for a transplant, the compatibility of ten of the donor and patient antigens are checked (generally, A, DR, C, B, and DQ).

When the transplant center, to which the blood samples were sent, examine the level of compatibility, they check the genetic similarity of the patient’s and the donor’s tissue types. Usually, a compatibility of at least 8 out of 10 antigens is necessary in order to approve a donor for a transplant.

WHY IS GENETICS A SUCH A MAJOR FACTOR?

Strict matching is necessary since the key to a successful replacement is genetics. If the donor matches the recipient, the transplant is not likely to be rejected and the chances of success are excellent. A sibling is a good choice.

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Stem cells ready for transplant

WHAT IF THERE IS NO SIBLING AVAILABLE OR THE SIBLINGS’ DNA DO NOT MATCH?

A request is then sent by the oncology clinic to a universal registry which will search its database for a compatible potential donor. A match may be found among the patient’s neighbors or it may be a resident of a country across the ocean. The potential donor is usually thrilled to become a crucial part of a life-saving medical miracle.

ARE ALL REGISTRIES THE SAME?

If the patient is a member of a minority ethnic group and a Registry which focuses on that ethnic group exists, a request is sent to that Registry thus greatly increasing the chances of finding a match.

HOW DOES THE REGISTRY DETERMINE DNA?

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Genetic testing via cheek swab

The new registrant swabs the inside of his cheek with a Q-tip. The saliva is then analyzed for its genetic components. DNA testing is costly ($50 per test) which is why a registry must put a cap on the amount of registrants it can accept. When donations are made by the public, the increased funding enables the registry to grow, thus boosting the chances of a positive response to each search request.

WHAT IS THE DIFFERENCE BETWEEN A BONE MARROW TRANSPLANT AND A STEM CELL TRANSPLANT?

Both are the same as far as results are concerned. However, the method of harvesting the stem cells differs. Not that long ago, stem cells were obtained from bone marrow taken from the donor. This procedure was painful for the donor and often discouraged the donation. One cannot imagine the devastation by the patient and his family when a perfectly matching donor refuses to go ahead.

WHAT IS THE PROCESS OF STEM CELL DONATION? IS THERE PAIN INVOLVED IN STEM CELL DONATION?

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Donating stem cells

In recent years, the cells are harvested from the donor’s blood. Medication is given to the donor beforehand to increase the stem cells in his circulatory system. Blood is then taken much the same as when donating a pint of blood. The stem cells are extracted from the blood which is then given back to the donor. The process continues for hours but the donor is kept comfortable during the whole procedure.

In some cases, minor discomfort such as muscle aches are felt but these soon disappear. The tremendous emotional satisfaction as he watches that little ‘bag of life’ taken to his soon-to-be blood brother will eradicate any lingering pains.

 Your gift will help save a life!

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Ezer Mizion and The IDF: A Life-Saving Partnership

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Stem Cell Harvesting

In recent years, a bone marrow transplant has been proven to be the cure for a myriad of diseases.  Many forms of cancer including leukemia and lymphoma in addition to other diseases such as sickle cell anemia and SCID are only some of the life-threatening illnesses that have bowed to its power. Like penicillin, a bone marrow transplant can save lives. But unlike penicillin, it cannot simply be purchased at the local pharmacy.

WHY NOT? Continue reading Ezer Mizion and The IDF: A Life-Saving Partnership

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Saving a Life: The See-Saw Remains on Up

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DNA

Everyone dreams about it. Very few ever have the opportunity. I was one of those very few. True, I didn’t jump into the ocean and save a child from drowning or dash into a burning building to save a baby but I did save a life. A forty-year-old cancer patient had only one chance to survive—a bone marrow transplant. A genetic match is vital for success and I was that genetic match. An Ezer Mizion staff member asked me if I would do it. Would I do it???! How could I not do it?! How could I live the rest of my life knowing that because of a little discomfort, a little inconvenience, a young woman was prevented from living the rest of hers? Continue reading Saving a Life: The See-Saw Remains on Up

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Surprise in the Mail

IDF celebration 2016 bLast week, Racheli Klakner (39), a lawyer and arbitrator from Ganei Tikvah, received an unexpected envelope in the mail: An honorary medallion and letter of thanks from Ezer Mizion’s International Bone Marrow Donor Registry for her responding to the call to save a life with her bone marrow donation.

A few years ago, Racheli had gotten a phone call from Ezer Mizion’s registry informing her that she was found to be a good match for a bone marrow donation for a patient who needed her stem cells in order to survive and get better.

Klakner was thrilled by the phone call and felt that a huge privilege had fallen in her lap. Accompanied by her husband and son, she went to a meeting to hear about the options and the procedures. After reading articles and research studies, they decided to make the donation in the operating room under full anesthesia. Last week, she received an honorary medallion from Ezer Mizion for her efforts.

It is very important to Klakner to raise awareness about the importance of donating stem cells and saving lives. She wants to convey this message and tell her story, for the benefit of all the people who are afraid or are put off by the idea.

“If it will encourage others to donate, if they will come to understand the significance and the power of giving, if they will grasp what it is to save the life of another person, or if anyone who is uncertain about donating stem cells will be persuaded by my words to go ahead with it, then I will have succeeded in saving another life, and it is well worth it.”

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