| Q: What is Leukemia?
A: Each year, more than 30,000 children and adults
in the U.S. are diagnosed with diseases such as leukemia and
aplastic anemia for which a hematopoietic (blood forming)
stem cell transplant can be a cure.
Diseases like leukemia and aplastic anemia attack a person's
bone marrow, eliminating its ability to create healthy blood
cells. Stem cells are immature cells that are located in the
bone marrow and are also released in small numbers into circulating
blood. These special cells can develop into red blood cells,
white blood cells or platelets in the blood stream.
Q: How is a donor found?
A: The first place physicians look for a match is
within the patient's immediate family. Regardless of race
or ethnicity, each person has a unique tissue type inherited
from his or her parents, which is why the chances of finding
a match are best among family members. The chances of two
siblings matching each other are one in four.
If no related donor can be found, the search for an unrelated
donor begins. To help match patients and unrelated donors,
the NMDP maintains a computerized Registry that records the
tissue type of individuals who have agreed to donate stem
cells. The computer crosschecks its records to see if there
is a match for the patient. The Registry currently contains
approximately four million potential donors.
Q: Who pays for the donation procedure? How much does
it cost?
A: All medical costs for the donation procedure are
covered by the patient or the patient's medical insurance,
as are travel expenses and other non-medical costs. The only
"costs" to the donor might be time taken off from work.
Q: Can I get tested for a specific patient (i.e., family
member or friend)?
A: The NMDP maintains a Registry of unrelated potential
donors willing to help any patient that they might match.
Individuals can be tested through the NMDP and ask for a copy
of their results at the time of testing. If they are interested
in getting tested only for a specific friend or family member,
they will need to have the blood test done privately. For
private testing, contact the Transplant Center or the patient's
transplant physician for suggestions.
Q: How can I verify that I am on the Registry?
A: Each year, the NMDP and its Network of Donor Centers
mail out an annual publication, The Marrow Messenger, to all
potential stem cell volunteers registered through the NMDP.
If you received the publication, you are on The NMDP Registry.
If you have never received The Marrow Messenger, but have
moved since you originally joined the Registry, you may still
be listed but would need to contact the Hawaii Bone Marrow
Donor Registry toll-free at 877-443-6667 or the NMDP Donor
Center where you were tested in order to verify this.
Q: What are the risks for the stem cell donor?
A: Bone marrow donation is a surgical procedure.
There is minimal risk involved. Serious complications are
rare but could include anesthesia reactions, infection, transfusion
reactions, or injury at the needle insertion sites. With a
marrow donation, donors can expect to feel some soreness in
the lower back for several days or longer following the donation.
Peripheral blood stem cell (PBSC) donors may experience
bone pain, muscle pain, nausea, insomnia and fatigue while
receiving injections of Filgrastim. Bone pain and headaches
have been the two most frequently reported symptoms. These
effects disappear promptly when the collection is complete.
During the apheresis procedure some donors experience a tingling
feeling from the anticoagulant used to keep the cells from
clotting. Others experience chills. These effects are relieved
after the donation is complete.
Q: Describe the stem cell donation process.
A: When you donate marrow, it is removed with a surgical
needle from the back of your pelvic bone. All marrow donors
are given either general or regional anesthesia. Usually,
four to eight tiny incisions are made in the pelvic area.
These incisions are so small that stitches are not necessary.
The procedure lasts between 45 and 90 minutes. Marrow is constantly
regenerating itself and is replaced within several weeks.
For a donation of peripheral blood stem cells, the donor
receives one injection of Filgrastim each day for four to
five days. Filgrastim is a drug that increases the number
of stem cells released from the bone marrow into the blood
stream. The stem cells are collected from the blood stream
through a process called apheresis. During apheresis, which
is done at a blood center or a hospital, your blood is removed
through a sterile needle placed in a vein in one arm and passed
through an apheresis machine that separates out the stem cells.
The remaining blood, minus the stem cells, is returned through
a sterile needle placed in a vein in the other arm.
Q: What is the difference between marrow and PBSC (peripheral
blood stem cell) donation?
A: Unlike marrow donation, a PBSC donation requires
no anesthesia. Marrow donors may experience pain and residual
stiffness up to a few weeks after the procedure. PBSC donors
experience symptoms such as bone pain and muscle pain prior
to the donation while receiving Filgrastim, the drug used
to increase the release of stem cells from the bone marrow.
Q: How will I know whether I'll be asked to donate marrow
or PBSC?
A: If it has been determined you are a complete match
for the patient, you will be told which method the patient's
physician requests prior to your preparation to donate. You
will receive further education about bone marrow and PBSC
donation. You will then be asked to sign an "Intent to Donate"
or "Consent" form. At this point, the donor needs to be absolutely
certain about making the donation because the patient will
begin to undergo treatment to prepare for the transplant.
Q: Which method of donation is easier for the donor?
A: It is not so much a matter of one or the other
being easier. Each method has its own discomforts and side
effects. One individual may feel marrow donation is the easier
procedure, while another may feel that PBSC donation would
be easier.
Q: Does marrow donation hurt?
A: Following the procedure, donors can expect to
feel some soreness in the lower back for a few days or longer.
Some donors have also reported feeling fatigued and having
some difficulty walking.
Q: Does PBSC donation hurt?
A: You may experience bone pain, muscle pain, nausea,
insomnia and fatigue while receiving Filgrastim. Bone pain
and headaches have been the most frequently reported symptoms.
These symptoms disappear promptly after the stem cell collection
is completed. During the apheresis procedure some donors experience
a tingling feeling from the anticoagulant used to keep the
cells from clotting.
For more Frequently Asked Questions, visit the National Marrow
Donor Program website at www.marrow.org
or call the Hawaii Bone Marrow Donor Registry at St. Francis
Medical Center at (808) 547-6154.
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