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Donor information
Stem Cell Transplant
Acknowledgments
The original Dutch brochure was composed by members of the NSV (Nederlandse Stamceltransplantatie
Verpleegkundigen) Working Party. In composing this brochure, information was used provided by the VU Amsterdam,
the AMC Amsterdam, the Erasmus MC in Rotterdam/Dijkzigt location, the UMC in Utrecht, the Stichting Europdonor
foundation and Amgen BV in Breda, the Netherlands. Photographs (Dutch brochure): AVD AMC Amsterdam
Translated from Dutch. The Dutch text shall prevail in the event of any discrepancy between this version and the original.
Translation by: Lia Fletcher (Fletcher Text and Translation Services, Utrecht)
Donorboekje - Engels
Introduction
You have been approached by the attending physician of a relative (usually your brother or sister) with the
request to become a donor for a stem cell transplant. The objective of this brochure is to give you more
insight into what this may involve for you. If you have any questions after reading this brochure, please
discuss these with your relative's attending physician. This is a brochure with general information, so that
there may be minor differences between one institution and another.
Why a stem cell transplant?
With regard to some blood diseases and solid tumours there is a bigger chance of recovery if, after a
number of treatments with cytostatics, the patient undergoes a stem cell transplant. Prior to this stem cell
transplant the patient will be given a very high dose of cytostatics, if necessary in combination with total
body irradiation. This treatment causes considerable damage to the patient's bone marrow, so that the
blood production will be disrupted. Furthermore, the immune system is also damaged as a result of which
the patient is no longer protected against infections.
Healthy donor stem cells can ensure that the blood production and immune system are restored and are
therefore of vital importance for the patient.
The production of blood
The production of blood cells (red blood cells, white blood cells and blood platelets) takes place in the
bone marrow. The basis is the stem cell, which, by splitting and maturing, produces a wide range of socalled progenitor cells (voorlopercellen). All ripe blood cells eventually originate from these progenitor
cells. The ripe blood cells leave the bone marrow and start circulating in the bloodstream. These blood
cells have a limited lifespan. Every day a healthy person produces several millions of cells to keep the
number of blood cells at the right level.
[See the illustration on page 4 in the Dutch brochure]
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Red blood cells (erythrocytes ) carry oxygen from the lungs to all the tissues and organs throughout
the body. A lack of red blood cells is called anaemia.
White blood cells (leukocytes). The various types of white blood cells defend the body against
infections (the immune system).
Blood platelets (thrombocytes) are essential as blood clotting agents.
Human Leukocyte Antigen (HLA) typing
The cell walls of human beings have markers that are unique to the person involved. These markers can
be regarded as the cell's fingerprint and are called HLA molecules (HLA is short for Human Leukocyte
Antigen).
People inherit the structure of these HLA molecules from their parents. There is a 25% chance that you
and your sibling are HLA identical. To be able to undergo a stem cell transplant, it is very important that
the patient is given HLA-identical stem cells. In this way, there is a minimum risk of the patient's body
rejecting the donor cells. You can read more about this subject in the chapter on the Graft-versus-Host
Disease.
To determine whether you are HLA identical to your brother or sister we need to take a small amount of
blood from you for research. This is the first selection. Further tests will be carried out if you prove to be
HLA identical to your sibling.
State of health of a prospective donor
As a prospective donor you need to be in a good state of health to endure the entire procedure. You
should have no blood-transmittable diseases (e.g. hepatitis), because these may affect the patient's
health.
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Additional medical examination
 A general medical examination and, if necessary, a pregnancy test.
 Blood examination: several vials of blood will be taken from you for additional tests. These tests could
include checking for infectious diseases (hepatitis, herpes, the AIDS virus), further tissue typing, blood
group determining and to get a general blood picture.
 Bone marrow puncture (not all centres perform this). A bone marrow puncture involves the physician
drawing out some bone marrow cells from the pelvic bone or the sternum (breastbone). The
procedure takes about ten minutes. Drawing out the bone marrow cells may briefly cause some pain.
The puncture spot may feel tender and sore for a few days after the procedure. This test is done to
determine the condition of your own bone marrow.
Several suitable donors
If several suitable donors are available in your family, a selection will be made on the basis of the medical
examinations set out above, and on gender, age and the state of health of the prospective donors.
Obtaining stem cells
There are two sources from which a donor's stem cells can be obtained:
 from the blood
 from the bone marrow.
It is important to know that only 2% – 3% of your total amount of stem cells will be taken from you.
Collecting stem cells from the blood
Before stem cells can be collected, these cells need to be moved from the bone marrow to the
bloodstream. This is achieved with a so-called growth factor called G-CSF (for example Neupogen®). Five
days before your relative's transplant, you need to give yourself G-CSF injections directly under your skin
twice a day [see the illustration on page 7 in the Dutch brochure]. A nurse will give you instructions before
you start injecting.
The stem cells are collected or 'harvested' from the blood on one day, or on two consecutive days. This
procedure is also called leukopheresis, for which you do not need to be admitted to hospital. The stem
cells are collected via a leukopheresis or cell separator machine to which you will be connected [see the
illustration on page 7 in the Dutch brochure]. An intravenous needle will be inserted in a blood vessel in
both forearms. The blood is transferred from one arm to the machine, where the stem cells are separated
from your blood. The remaining blood is returned via the other arm. Depending on the type of machine,
this procedure may also be carried out with just one needle. The stem cell collection procedure depends
on the institution's rules and regulations. The collection (or harvesting) generally takes about four hours.
Usually sufficient cells are collected in two days, but sometimes a third collecting day may be necessary.
In some cases it is not possible to insert a needle in both forearms. In that case a needle will be inserted
in a large blood vessel in the groin. A blood-diluting agent will be added to prevent the blood from clotting
in the machine.
Possible side effects of the procedure
 Some people experience slight bone and muscle ache when injecting G-CSF growth factor.
Paracetamol gives sufficient relief. Preferably do not use aspirin because it may dilute the blood.
 The blood-diluting agent that you will be given during the leukapheresis may cause a tingling feeling
around the mouth and in the finger tips. This is caused by a (temporary) shortage in calcium in your
blood and usually disappears after drinking a glass of milk.
 The number of blood platelets may drop as a result of the stem cell collection. This may cause your
blood not to clot so well and small wounds may continue bleeding longer. The number of blood
platelets will rise within a few days.
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Collecting stem cells from the bone marrow
As mentioned earlier, stem cells for a transplant can also be collected from your bone marrow. Generally,
one day before the bone marrow is taken you will be admitted to the nursing ward where your relative is
treated.
Because the bone marrow is collected when you are under an anaesthetic, you will see an
anaesthesiologist on the day of admission. In some centres you have the option between a full
anaesthetic or a 'spinal puncture', whereby only the bottom half of your body will be numbed while you
stay conscious throughout the procedure. Some centres may carry out the stem cell collection in the
outpatients' department. At all events, you need to be present before your relative undergoes any
irradiation treatment.
The bone marrow collection takes place in the operating theatre early in the morning. During the
procedure you will be lying on your stomach. Bone marrow (mixed with blood) will be drawn out from the
left and right of your pelvic bone. Interim counting of the number of cells collected will constantly take
place throughout the procedure. As said earlier, the amount of bone marrow cells harvested is only a very
small percentage of your total cells. Furthermore, these cells are regenerated in a short space of time. The
procedure lasts about one hour.
[text under the illustration on page 8 in the Dutch brochure: This is what the stem cells look like after the
leukapheresis].
Possible side effects of the procedure
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Sometimes slight nausea as a result of the anaesthetic.
Low blood pressure during the first hours following admission. For this you will be given extra fluids
intravenously.
The puncture spot may feel tender and sore (a 'bruised' feeling when you walk). This feeling may last
a few days but paracetamol will give sufficient relief.Anaemia, because many red blood cells will be
taken, too. Sometimes you will be given a prescription for iron tablets, which will reverse anaemia. In
exceptional cases, a blood transfusion will be given.
Depending on your haemoglobin level and after the haematologist on duty has checked you, you will be
discharged on the day of the bone marrow collection or the day after. Because you have been given an
anaesthetic and may have a lower haemoglobin level in your blood, we advise you not to drive home
alone.
In the week following the bone marrow collection you may feel more tired than usual. Therefore take
sufficient time to recover. After a few weeks you will be checked once more at the outpatients' department.
The transplant
The stem cells collected from you cannot simply be given to the patient. In the laboratory the stem cells
are counted, purified and processed, if necessary. Subsequently, the stem cells are given to your brother
or sister by intravenous infusion (drip). [See the illustration on page 10 in the Dutch brochure.] Stem cells
that have been collected via the peripheral procedure may also be given on two separate days. The stem
cells will find their way back to the bone marrow via the bloodstream, where they can settle to work on a
healthy blood production and protect the body against infections. The stem cells are not placed directly in
the bone marrow cavity through an operation. In consultation and with permission of your brother or sister,
you can be present during the transplant.
[See the illustration on page 10 in the Dutch brochure.]
Donor lymphocyte infusion
There may be a moment after the allogeneic stem cell transplant that you will be approached again with
the request of whether lymphocytes can be taken from your blood to contribute to the follow-up treatment
to the transplant. This treatment is called a Donor Lymphocyte Infusion (DLI). If this treatment is needed,
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this will first be discussed with the patient. The donor physician will inform you and draw up a planning in
consultation with you. The preparations will comprise a medical examination by a physician, and blood
tests.
The same leukopheresis procedure that we discussed earlier will be followed for the collection of
lymphocytes, for which no growth factors will need to be injected. The collected lymphocytes will be
divided into portions. The first portion will be given freshly to your relative on the same day, while any
remaining portions will be frozen. The frozen portions are used if a situation arises whereby the physician
decides that more infusions (DLI) are needed. The advantage of storing frozen portions is that you do not
need to undergo another leukopheresis procedure.
You can go home after the DLI procedure is finished.
Graft-versus-Host Disease (Reaction of the donor cells)
The body's reaction to being given donor cells is called Graft-versus-Host Disease (GVHD) or an adverse
immunological reaction, i.e. the way the graft (your donated stem cells) responds to the recipient (the
patient). This reaction is caused by the fact that the recipient of the graft has no more immune cells left.
The graft does contain immune cells – T-lymphocytes – which may cause a reaction in the patient's body.
In a number of cases a large part of these T-lymphocytes are removed from the graft. The patient will be
given cyclosporine, a drug that suppresses the immune system of the donor cells. In spite of this, in many
cases the patient gets GVHD to some extent. This usually manifests itself in skin disorders, starting with
redness on the palms of the hands and/or soles of the feet and itching. In some cases the intestines are
affected, which may cause diarrhoea. If the liver is affected, the patient may get jaundice.
In most cases Graft-versus-Host Disease (GVHD) can be controlled with drugs such as prednisone.
Prednisone cream sometimes gives sufficient relief if only the skin is affected. The most common form is
'acute GVHD', which may occur soon after the transplant, usually as soon as the number of leucocytes is
rising. This form of GVHD may disappear by itself or may become chronic. Chronic GVHD usually
surfaces at a later stage (sometimes after several months) and may even occur without being preceded by
acute GVHD. With regard to some diseases a mild form of GVHD may also be useful and even be
welcomed: the donor's T-lymphocytes can fight any leukaemia cells or tumour cells that may still remain.
Mental pressure
You have been asked whether you agree to donating stem cells for your relative. Not everybody considers
it a natural thing to be a donor, for example if the relationship between the donor and the patient is not
optimal. Your sibling's attending physician has explained to you how important this treatment will be for
your relative, but also the consequences of the treatment and the progress of the disease without a
transplant. It is therefore very important to consider the situation carefully. There is no way back once your
relative has been treated with a high dose of chemotherapy, if necessary in combination with total body
irradiation. At that moment your stem cells are of paramount importance. We therefore advise you not to
wait too long if you have any questions or doubts.
Donors are sometimes afraid to catch a cold or become ill prior to the donation. People in your
environment sometimes tend to keep a very close eye on you. Of course you will have certain
responsibilities, but you can live a normal life, go to work and enjoy your hobbies. You can eat and drink in
the way you are used to. We only advise you to try to avoid unnecessary risks and protect yourself a bit
better against infectious diseases. If you become ill, contact the hospital where your relative will have the
transplant as soon as possible.
The emotional pressure associated with the donation of stem cells should not be underestimated. With a
stem cell transplant your relative will be given the best treatment available, but this does not always
guarantee that the disease will be gone and will stay away. The Graft-versus-Host Disease can be mild or
severe and may even be fatal for your relative. These and other complications are aspects that you, as a
donor, can absolutely not prevent.
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Financial arrangements
In principle, the medical costs relating to you as a donor will be covered by the patient's (your brother's or
sister's) medical insurance. Depending on the arrangements the medical insurer and the hospital have
made, the hospital bills will be sent to them or to you. If they are sent to you, you can advance the money
and claim the bills later, or you can forward them to the patient's insurance company.
Some insurers also reimburse the donor's travelling expenses, for which the patient needs to contact the
insurance company.
You can report sick but do not need to take up leave days for tests and examinations in the outpatients'
department, or for the leukopheresis.
Some donors prefer not to discuss the stem cell transplant with colleagues at work or with their employer.
Of course it is entirely up to you, but from experience we know that most employers are very considerate
and understanding. They are usually prepared to grant special leave, so that you do not need to report
sick. The same thing applies to donors who attend school or another institution. If employers or school
heads have questions that you cannot answer, they can contact the attending physician of your brother or
sister. It goes without saying that confidential information such as the results of your examinations or
information about the patient will never be disclosed.
If you need to cancel your holiday due to the transplant, this will only be covered if you have taken out a
travel cancellation insurance. Your sibling's attending physician will issue the required medical statement
on request.
Planning
MUD transplant
About 30% of the patients who need to undergo a bone marrow transplant have an HLA-identical brother
or sister. In some cases it may be useful to conduct more extensive research into the family on the basis
of the tissue type found, in order to find a related donor that is as close a match as possible. In that case
genealogical details will be asked and the patient's uncles, aunts and cousins may also be approached. Of
course, everybody is free to participate in this research and all information will be treated confidentially.
All over the world people have registered to donate stem cells in case there is no matching related donor.
The tissue types of all these people are registered in the Bone Marrow Worldwide database. Every month
this world-wide database of anonymous stem cell donors (with about 8.3 million donors at the beginning of
2004) is updated in Leiden, in the Netherlands, and the physicians and coordinators of transplant centres
can gain access to it via the Internet. Many registered donors have been recruited via the blood banks.
People who were HLA typed with regard to a relative can also register as an unrelated bone marrow donor
via the Stichting Europdonor foundation. Information and registration forms can be obtained from the
hospital where your relative is being treated or via the Stichting Europdonor foundation. This foundation
manages the Dutch bone marrow bank with currently 32,000 registered donors. Refer to
http://www.europdonor.nl for the address and more information about the foundation.
Part of the patients who have no HLA-identical donor qualify for a transplant making use of a Matched
Unrelated Donor (MUD). The Stichting Europdonor in Leiden will carry out searches for an unrelated
donor with regard to Dutch patients. The search for a matched unrelated donor takes three to six months
on average and depends on the patient's HLA-typing, donor availability, additional tissue typing, cellular
tests and whether the donor is medically suitable. Depending on the patient's diagnosis, a donor who is as
close a match as possible will be sought and eventually be asked to donate bone marrow or peripheral
stem cells. Donations take place strictly anonymously, the donor and patient will never meet. The donor
will only be given age and gender-related information of the bone marrow recipient.
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HLA mismatch
A matched unrelated donor is found with regard to a considerable number of patients who need to
undergo a bone marrow transplant. In a number of cases the search is unsuccessful. This may happen
because the patient has a very rare HLA-type or originates from a population group from which very few
donors are registered. In consultation with the attending physician it may be decided to continue the
search for a donor with as close a match as possible but not HLA-identical, a so-called mismatch donor.
This partly depends on the patient's diagnosis. Sometimes an acceptable related mismatched donor can
be found. Searching for a mismatched donor usually takes longer than the 'normal' search.
In conclusion
We would like to stress that you, as a donor, can contact the hospital where your relative will have a
transplant for any questions at any time, even if the actual transplant took place a long time ago.
In addition, you can call on the contact group for patients, donors, relatives and surviving relatives, the
contactgroep Stamceltransplantaties (SCT). Brochures can be obtained from the nursing wards or the
outpatients' department. You can also refer to the following website for addresses and more information:
http://www.kankerpatient.nl/sct/.
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Glossary
Allogeneic transplant
Transplant with donor stem cells.
Anaemia
Lack of red blood cells.
Anaesthesia
Loss of sensation with or without the loss of consciousness.
induced by an anaesthetic.
Anaesthesiologist
A physician who administers anaesthetics.
Bone marrow puncture
Bone marrow is drawn out from the pelvic bone or sternum
(breast bone) under a local anaesthetic.
Cyclosporine
A drug used to prevent rejection.
Cytostatic
A drug that kills tumour cells.
DLI
Donor lymphocyte infusion.
G-CSF
Stem cell growth factor (Granulocyte-Colony Stimulating
Factor).
GVHD (Graft-versus-Host Disease)
Immunological reaction of the graft (donor cells) to the
recipient.
Haematologist
Doctor of internal medicine specialised in haematological
disorders.
Haemoglobin level
Level of an iron-containing protein that is situated in the red
blood cells.
HLA
Human Leukocyte Antigen.
HLA molecules
Markers on the wall of each human cell.
HLA identical
The markers of the patient and donor are identical.
HLA mismatch
The markers of the patient and donor are not identical.
Immune system
The body system that protects against infections.
Leukapheresis
Collecting or 'harvesting' stem cells via the bloodstream.
MUD
Matched Unrelated Donor, an unrelated bone marrow donor
whose tissue type 'matches' the patient's.
Prednisone
Anti-inflammatory drug.
Stem cells
Progenitor cells or mother cells that may develop differently
and eventually mature to become red blood cells, white blood
cells or blood platelets.
Stem cell transplant
Stem cells are given to the patient intravenously.
T lymphocytes
Body cells that play a large role in the immunological
response to infections/viruses.
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Addresses
V.v.O.V.
Vereniging van Oncologie Verpleegkundigen
Postbus 3135
3502 GC Utrecht
Tel: 030 – 291 90 47
Email:
[email protected]
Website: http://www.vvov.org/
SIG N.S.V.
Nederlandse Stamceltransplantatie Verpleegkundigen
p.a. Universitair Medisch Centrum Utrecht
Afdeling Giraf - WKZ KA 04013.2
Postbus 85090
3508 AB Utrecht
Email:
[email protected]
Website: http://www.vvov.org/
[Organisation – SIGs – Stem cell transplant]
Stichting Europdonor
Plesmanlaan 1b
2333 BZ Leiden
Tel: 071 – 568 53 00
Fax: 071 – 521 04 57
Email:
[email protected]
Website: http://www.europdonor.nl
Contactgroep Stamceltransplantaties (SCT)
Plesmanlaan 125
1066 CX Amsterdam
Tel: 0299 – 43 94 81 (for peer patient support)
Email:
[email protected]
Website: http://www.kankerpatient.nl/sct/
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