Allogeneic bone marrow and stem cell transplantation

Document Sample
Allogeneic bone marrow and stem cell transplantation Powered By Docstoc
					              Allogeneic bone marrow and stem cell
              transplantation
             Contents                                                        To prepare you as best we can, we have drawn up this
                                                                             Information Brochure. Before your admission you have
             Preface                                                         already met with your attending doctor and with a
             What is a peripheral stem cell transplantation or bone          nurse, who have told you all about this treatment, and
             marrow transplantation?                                         what to expect during your stay in hospital.
             Stem cell and bone marrow collection                            This brochure is meant to supplement this information,
             Chemotherapy                                                    and to give you the chance to read through the
             Central venous catheter                                         information at your leisure.
             Radiotherapy                                                    We advise you to write down any questions that arise,
             Transplantation                                                 so that you can discuss these with us at the next
             The recovery stage 1                                            meeting.
             • Physical care
             • Oral care                                                     What is an allogeneic stem cell or
             • Medication                                                    bone marrow transplantation?
             • Nutrition                                                     An allogeneic stem cell or bone marrow
             Other care workers                                              transplantation is a procedure that is used to treat
             • Oral hygiene                                                  several forms of cancer, such as leukaemia, Non-
             • Physiotherapist(s)                                            Hodgkin lymphoma, Hodgkin’s disease or Kahler’s
             • Social worker                                                 disease, among many others.
             • Mental health specialist                                      Stem cells are normally present in the bone marrow.
             • Activities supervisor                                         By means of stimulation with a growth factor, they can
             Room facilities                                                 also be present in the blood.
             What to bring with you                                          Bone marrow cells produce red blood cells, white
             Mental and emotional stress                                     blood cells and blood platelets. The red blood cells are
             Your partner and loved ones                                     responsible for the transport of oxygen throughout the
             Visiting hours                                                  body, while the platelets help with blood clotting. The
             After the transplantation                                       white blood cells protect against infection.
             Contact Group
             In conclusion                                                   A stem cell / bone marrow
             Addresses and telephone numbers                                 transplantation consists of several
             Appendix 1: Cleaning and dressing the Hickman/                  stages
             jugularis catheter insertion opening at home                    - Stage 1: Chemotherapy
             Appendix 2: Cleaning and dressing Hickman/jugularis             - Stage 2: Collecting stem cells / bone marrow
             checklist                                                       - Stage 3: Radiotherapy (depending on the
             Appendix 3: List of questions for visit to polyclinic                      Transplantation Protocol)
             Appendix 4: Blood type and transfusion survey                   - Stage 4: The transplantation:
                                                                                        Myeloablative transplantation
             Preface                                                                    Non-myeloablative transplantation
             Soon you will be admitted to ward nr. A5 in connection
             with a stem cell transplantation or bone marrow                 HLA-identical or haploidentical donor transplantation
             transplantation. We are aware that this is will be a very       Risks, side effects and complications
             emotional and intense experience.                               - Stage 5: Recovery
23895-0710




              University hospital Maastricht                             1
Stage 1: Chemotherapy                                            On the whole, these days blood stem cells are used.
Before your transplantation you will have several days           However, for a number of reasons it may be necessary
of chemotherapy, supplemented with radiotherapy if               to still collect bone marrow.
necessary. What form of chemotherapy and, if
applicable, radiotherapy you will get depends on your            Central venous catheter
disease. The chemotherapy consists of one or several             Preceding chemotherapy, a central venous catheter,
medicines that are given for several days via the                known as a Hickman or jugularis catheter, is inserted.
Hickman or jugular catheter, and sometimes in the                This is a flexible catheter with two separate lines,
form of tablets.                                                 which is used to administer chemotherapy, antibiotics,
To prevent sickness you are given medication; however,           blood products and also nutrition if necessary. It can
sickness and vomiting cannot always be prevented.                also be used to take blood samples. Sometimes blood
After the days of chemotherapy, you will not get any             is also drawn from the veins. The insertion of this
chemo for one or two days, to enable you to recover a            catheter takes place at the Surgical Day Centre; this
little.                                                          takes about 2 hours under local anaesthesia. After
Moreover, you will be given a lot of liquids during              insertion a photograph is taken immediately to check if
chemotherapy, to ensure that your body disposes of               the catheter is in the right position. During your stay in
the waste matter from the chemo as quickly as                    hospital, the catheter is cleaned by the nursing staff.
possible. This is necessary to protect your kidneys and
bladder against the harmful impact of these wastes. It is        Stage 3: Radiotherapy (irradiation)
essential, therefore, for you yourself to drink plenty of        Certain treatment programmes involve the use of
liquids. Chemotherapy has an impact on the blood                 radiotherapy in addition to chemotherapy before the
cells; it is not selective and will fight both good and bad       transplant. This means radiation of the entire body.
cells. Because of this the number of white blood cells,          Before admission you will meet with the radiotherapist
red blood cells and blood platelets will be reduced. In          at Maastro, who will inform you about the procedure.
addition to your blood cells, your oral and gastro-              Also on that occasion the radiation fields are
intestinal tracts will also be affected. This manifests          designated with ink.
itself as sickness and vomiting, diarrhoea or                    After radiation of the body, you may develop a fever
constipation, irritation of the mouth and loss of                accompanied by chills; sickness/ vomiting may also
appetite. Furthermore, chemotherapy affects the skin,            occur, as well as myalgia (muscle aches) all over your
which may cause discoloration of the skin, dry skin or           body. To prevent this as much as possible, you are given
acne. Hair loss in case of chemotherapy is usually               medication against sickness before the start of
temporary, and your hair will start to grow back in one          treatment, and upon your return to the clinic you will
to three months after the end of treatment.                      be given Paracetamol as well as an IV-drip to combat
The impact on the reproductive organs is generally               fever, if necessary. The first days after radiotherapy,
permanent sterility.                                             swelling of the mucous membranes of the mouth and
                                                                 throat is quite common. Also reddening of the skin,
Stage 2: Stem cell collection (= aphaeresis)                     comparable to a slight sunburn, is often seen; this will
If you get stem cells from a donor (brother or sister),          diminish in a few days.
stem cell aphaeresis is usually done on the same day as
the transplantation, i.e. the transplantation takes place        Stage 4: Transplantation
within a few hours after the stem cells have been                The transplantation is done immediately following
collected. It is also possible for the donor to donate           chemotherapy and/or radiotherapy.
the stem cells before you have the radiotherapy and/or
chemotherapy treatment. Before the aphaeresis the                The stem cells or bone marrow cells are returned to
donor is given growth factor for several days in order           the body via the Hickman or jugularis catheter.
to ensure that his/her blood contains sufficient stem             The day of transplantation is called Day 0.
cells. If aphaeresis needs to be repeated, this is done on       We know from experience that a transplantation can
the following day. In that case you will get stem cells          be an emotional experience.
from your donor for two or more consecutive days.                For this reason your partner, donor and/or loved ones
                                                                 are permitted to be present on this occasion.
Bone marrow collection                                           If you ask us, we can let you know the time of
If you are given bone marrow from a donor, the bone              transplantation.
marrow is collected on the day of the transplantation.           The stem cells or bone marrow are administered by a
The donor himself will spend one day in hospital.                doctor, with a nurse being present at all times.


  University hospital Maastricht                             2
* Myeloablative stem cell transplantation                       If an HLA-identical donor is used, the immune cells
Myeloablative stem cell transplantation means that              that are expected to fight your disease are known as
chemotherapy is given with the aim to eliminate the             ‘T-cells’. These T-cells have receptors (“feelers”) on the
malignancy, whereby the patient’s own bone marrow is            outside. These T-cell receptors fit precisely on the
also totally destroyed. The literal translation of              various HLA molecules that are present on each of the
‘myeloablative’ is ‘taking away bone marrow’. Often a           cells of your body. These HLA molecules are as it were
high dose of chemotherapy is used, sometimes in                 small trays which present tiny particles of all the
combination with a high dose of radiation of the entire         protein present in and on the cells to the T-cells. With
body, in order to destroy the tumour.                           its T-cell receptor, the T-cell constantly explores these
The purpose of chemotherapy (with or without body               trays on all the cells of the body. If a foreign piece of
radiation) is, in addition to annihilating the tumour up        protein is presented, the T-cells will raise the alarm,
to its very last cell, to make room in the bone marrow          and will kill these cells that contain foreign protein
for new bone marrow, and to shut down the patient’s             particles. Under normal conditions, this is particularly
own immune system. This reduces the risk of the                 important in case of an infection. After all, the viruses
donor’s bone marrow being rejected by your own                  and bacteria that threaten us will invade our cells, as a
immune system. In this way, in the end the patient’s            result of which parts of these viruses and bacteria will
bone marrow and immune system will change into that             automatically end up in the trays. This then creates a
originating from the donor.                                     specific immunity which enables us to overcome the
                                                                infection.
* Non-myeloablative stem cell transplantation
With non-myeloablative stem cell transplantation, the           In case of a transplant using HLA-identical donors, the
purpose is to enable the donor’s bone marrow and                donor’s T-cells will notice minor differences in the
immune cells to take over the patient’s blood formation         protein of the patient’s cells. This is possible because
and immune systems. To make this possible, the                  only the chromosomes that contain the code for HLA
patient’s immune system is suppressed directly before           have to be identical between the donor and the patient;
transplantation with less chemotherapy and/or                   all the other chromosomes can be different. Because
radiotherapy. This treatment means that fewer of the            these proteins also occur in the malignant cells, the
patient’s malignant cells are destroyed, and that the           donor T-cells will also want to kill these cells. Often
bone marrow is not destroyed either. The assumption             this T-cell reaction is stronger against malignant cells
is that the donor’s immune cells will deal with the             than against the healthy cells of the patient.
malignant cells present in the patient, and will nestle         Nevertheless, the patient’s healthy cells may also be
inside the bone marrow. This in turn means that in the          attacked, resulting in ‘graft-versus-host’ disease.
end the patient’s own bone marrow and immune                    Actually, the donor T-cells do not always succeed in
system will be eliminated by the donor immune cells,            killing all the malignant cells. This also depends on the
leaving only the donor-originated immune cells, just as         type of disease, and it is impossible to predict in
would be the case for myeloablative transplantation.            advance for which patient this procedure will or will
                                                                not be successful; only time will tell.
This makes this particular type of transplantation safer        If a haploidentical donor is chosen, it is the donor
during the first few weeks than a myeloablative                  NK-cells rather than the T-cells that will eliminate your
transplantation, because less chemotherapy and                  disease. This is particularly successful in case of acute
radiotherapy are given, reducing the risk of damage             myeloid leukaemia and myelodysplasia – so successful
involving possible complications.                               that the risk of recurrence of the disease is very low.
To what extent these side effects occur depends on              Haploidentical means that only half of the donor HLA
the treatment. On the whole, non-myeloablative stem             molecules are the same as yours; i.e., the other half is
cell transplantation will have less side effects than           completely different.
myeloablative stem cell transplantation.
Despite this intensive treatment, we cannot exclude             Because your own T-cells, but also the donor’s cells,
the risk of recurrence of your disease. In that case an         react very strongly to foreign HLA molecules, special
effective therapy is sometimes still available, but often       precautions are needed to prevent this T-cell
this is not the case.                                           activation. This means that you will get radiation
                                                                therapy and chemotherapy to kill as many of your own
* HLA-identical or haploidentical donor                         T-cells as possible. You will also be given a special
Depending on the nature of your disease, it is decided          protein (usually rabbit or horse protein) that specifically
to perform a stem cell transplantation from an HLA-             kills human T-cells. In this way, in most cases we are
identical or haploidentical donor.                              able to prevent your own T-cells from attacking and


 University hospital Maastricht                             3
eliminating the donor stem cells. To prevent graft-               * Risks, side effects and complications
versus-host disease caused by activation of the donor             The risks and complications of this treatment are partly
T-cells, virtually all the T-cells that are found among the       the same as those you may be familiar with from
stem cells collected from the donor will be removed. In           previous chemotherapy treatments.
this way, graft-versus-host disease can be prevented in           These side effects are:
nearly all cases. A drawback here is, however, that for           • sickness and vomiting
quite some time you will have no T-cells at all. This             • diarrhoea
makes for a fairly high risk of contracting a virus or            • damage to the mucous membranes, particularly of the
yeast infection.                                                    mouth and gastrointestinal tract
In spite of this risk, the outcome of this procedure is           • a heightened susceptibility to infection, which may
generally good; in any case, that is the experience of a            lead to fever
large transplantation centre in Italy. Even though our            • chance of haemorrhaging
own experience with haploidentical transplantation is             • hair loss
still limited, we prefer haploidentical donor stem cell           • infertility
transplantation for certain forms of acute myeloid                In addition to the above-mentioned side effects, there
leukaemia and myelodysplasia, since the use of HLA-               is a risk of:
identical donors is virtually useless in such cases.              • graft-versus-host disease
                                                                  • virus or yeast infection
Why are NK-cells effective in the case of haploidentical
transplantation, but not in case of HLA-identical                 * Graft-versus-host disease
transplantation? This is because the receptors (the               In case of an allogeneic transplantation, there is a risk
‘feelers’) of the NK-cells are different and function             that the donor cells will proceed to attack various
differently than those of the T-cells. The NK-cells must          organs and tissues of the patient. We call this a reverse
‘see’ their own HLA-molecules on all parts of the body.           rejection response or graft-versus-host disease. This
If they do not see them, they will kill such a cell.              disease can lead to inflammation of the skin, lung,
Normally, this only happens with sick cells, e.g. in the          mouth, gastro-intestinal tract or liver. The earliest signs
case of a viral infection, because these cells will start         of this are usually reddening of the skin, appearing on
making less or no HLA. There are three types of HLA               the palms of the hands, soles of the feet and in the face.
molecules for which the NK-cells possess receptors.               This disease may occur as soon as 14 days after the
Each individual has one to three of these types; this             transplantation, but can also occur months later.
depends on the hereditary characteristics transmitted             To prevent this disease, you will be given immune-
to him/her by the father and mother. Actually, not all            suppressive medication for a number of months. If the
the NK-cells possess the same receptors. But each                 graft-versus-host disease occurs, this does not mean
individual NK-cell will always recognize one or more of           that the transplantation has failed.
the patient’s own HLA molecules as its own.
                                                                  Stage 5: Recovery
When a haploidentical transplant is performed, you can            In the period that follows, the bone marrow will need
choose the donor in such a way that he/she has one or             time to recover. You should count on a period of three
two out of the three HLA-types whereas the patient                to four weeks before the bone marrow will again be
does not. In such cases, the donor NK-cells will miss             able to again produce sufficient white and red blood
the HLA-types that the patient lacks. The consequence             cells and blood platelets.
then is that the patient’s cells will be killed by the            During this period you will be highly susceptible to
donor NK-cells. Actually, the donor NK-cells do not               infection due to lowered resistance. To protect you
attack all the cell types of the patient, only the bone           against external infection, a number of protective
marrow cells and blood cells. Because acute myeloid               measures are taken.
leukaemia cells are also bone marrow or blood cells,              These protective measures are:
they will be killed by the donor NK-cells. This reduces           • From the moment you are admitted to hospital until
the risk of recurrence of the disease to virtually zero.            the time when your blood has recovered, you will
The fact that the donor NK-cells also kill possibly                 stay in a double or single room. You are allowed to
healthy bone marrow and blood cells of the patient is               leave the room but you may not leave the ward.
not a problem; after all, the donor stem cells will take          • No sticking tape may be attached to the wall.
over the function of the bone marrow.                             • Objects taken from your home or from the library
                                                                    will first have to be cleaned with household
                                                                    detergents; please let the nurses know.


  University hospital Maastricht                              4
• During this period you may run a fever. In this case you       To prevent or minimize these problems, good oral
  will first be physically examined by the doctor, after          hygiene is required. This means rinsing your mouth
  which a lung X-ray is taken, and a number of                   four to six times a day with salt water, and brush your
  hemocultures (blood cultures) are taken by the nurse.          teeth at least four times a day after meals and before
  You may be started on antibiotics via an IV-drip.              going to sleep. If necessary, your mouth will also be
• To supplement the lack of red blood cells or blood             sprayed by the nurse, and painkillers may be prescribed
  platelets, you will be given regular blood transfusions.       by the doctor.
  The white blood cells cannot be returned to your body,         If you wear dentures, we advise you to wear them as
  but in time they will regenerate of their own accord.          little as possible, to prevent irritation.
• Due to the lack of blood platelets you are more likely         Keep your dentures in a denture tray with
  to develop haemorrhaging and bruising. For this                chlorhexidine gluconate 0.2% in water. The tray and
  reason you must be take extra care not to bump into            liquid must be cleaned daily. Definitely remove your
  or cut yourself on sharp objects.                              dentures before retiring for the night.

You must observe a number of requirements during                 • Regarding to medication
this period:
                                                                 To prevent infection caused by your own body, you are
• Regarding to body care                                         prescribed medication in the form of tablets and
- To minimize the risk of infection you must do the              capsules. This consists of an antibiotic and anti-yeast
  following:                                                     medication. Before you start on this medication, throat
- Wash your entire body daily with Betadine soap (you            and faeces cultures are taken. This is repeated twice a
  will be given this at the clinic)                              week. This enables us to verify whether certain
- Wash your hair/scalp every other day with Betadine             bacteria, yeasts or fungi which can be harmful to you,
  shampoo (you will be given this at the clinic)                 are present in your body and/or excrement. If
- After defecation always clean your intergluteal cleft          necessary, your medication will be adjusted.
  (the cleft between your buttocks) with Betadine                Bacteria and fungi are normally present on everyone’s
  scrub.                                                         skin, mucous membranes and intestines. In everyday
- Do not use any body care products such as makeup,              life, these organisms do not constitute a threat to your
  deodorant, or body milk.                                       body. However, now that your immunity has become
- Wash your hands regularly, in any case before meals            minimal, they may in fact give rise to problems. The
  and after visiting the bathroom.                               medicines that you are given will suppress bacteria and
- Change your underwear every day, your upper                    fungi that could be a threat.
  clothing every other day.                                      You may have trouble swallowing due to pain in your
- Do not walk barefoot, and wear washable slippers.              mouth and throat (caused by the chemo). However, it
- You are not permitted to wear contact lenses during            is essential that you do not stop taking your
  your stay in hospital; bring glasses if necessary.             medication. To alleviate the pain, a painkiller can be
- Cutting your toenails and fingernails is not permitted          given.
  in view of the risk of bleeding; filing them is
  permitted, however.                                            • Regarding to nutrition
- Shaving is only permitted with an electric razor, not          If indicated, the dietician can come to see you; she can
  with razorblades.                                              inform you about low-bacteria nutrition and discuss
- Wearing rings, watches or other jewellery is not               your nutritional preferences with you.
  permitted.                                                     The low-bacteria food is given to you in order to
- Smoking is forbidden at all times.                             minimize the amount of bacteria you get from your
                                                                 nutrition.
• Regarding to oral care                                         Some general rules:
Chemotherapy irritates the mucous membranes, which               - You are not permitted to drink water from the tap,
can cause problems particularly inside the mouth.                  but you may drink bottled water or Spa (you can use
The symptoms may be:                                               tap water to brush your teeth, however);
- Painful gums                                                   - Any opened wrappings or bottles must be replaced
- White discolouration of the mucous membranes                     within 24 hours;
- Infections, aphthae (oral ulcers)                              - There is a refrigerator in your room for beverages
- Changes in saliva                                                and milk products;
- Dry mouth, peeling of the lips                                 - Food and drink must not be kept outside the
- Oedema (fluid accumulation) inside the mouth                      refrigerator for too long (e.g. milk products no more


 University hospital Maastricht                              5
  than two hours), so consume them as soon as                     yourself will decide if you feel the need for further
  possible.                                                       support. This can then be arranged between the two of
- Candy, cookies and such can be brought only in their            you.
  individual wrappings.
- You may be unable to ingest sufficient food due to               Mental Health Specialist
  lack of appetite, sickness or difficulty swallowing.             An appointment for this can be made at your own
  Initially, additional fluid will be administered via an          request.
  IV-drip. If this is insufficient, special nutrition is
  administered via the Hickman or jugularis catheter.             Activities Therapist
- In case of diarrhoea you may not consume any milk               The Maastricht General Hospital offers Activities
  products, but yoghurt is permitted.                             Therapy, the aim of which is to have a positive impact
                                                                  on the mental and social functioning of its patients.
Other care workers                                                The purpose is to make the patient feel less isolated by
In addition to the dietician mentioned above, you will            means of various activities.
meet other care workers as well. They are the:                    These activities will always be based on the patient’s
                                                                  capabilities and limitations.
Ward Doctor                                                       The activities generally take the form of working with
This doctor is responsible for everyday medical                   materials such as paint, paper, wood, textiles, etc.
matters, and is accompanied by a supervisor (i.e. a               You can sign up for this activities therapy through the
haematologist). The ward doctor will come to your                 nurses or attending physician, and the therapy will take
bedside daily. Your attending physician (i.e. the                 place in your own room.
polyclinical doctors) may also come to see you.
However, it is the supervisor who decides medical                 Room Facilities
policy. This policy is then discussed with the
Haematology Work Group.                                           Each room contains a washstand and a toilet.
In consultation with the nurses, a meeting of the                 In addition, each room has a refrigerator, television,
doctor with you and your family can always be                     video, home-trainer, water boiler and facilities for using
arranged, if necessary in the presence of the supervisor.         a laptop. The double rooms do not have showers; the
                                                                  shower is located in a separate shower room in the
Oral Hygienist                                                    ward.
Some time before treatment is begun, you will be                  If you stay in a single room, you will have your own
referred to the Oral Hygienist at the Oral Surgery                toilet and shower facility.
Polyclinic. She gives instructions on oral hygiene, and           Telephone and TV are present in every room. They can
your teeth will be cleaned. Bad teeth can be a source of          be used against payment.
infection. During your stay in hospital, the oral hygienist
will visit you and give advice on oral hygiene.                   What to bring with you
Physiotherapist                                                   Everything you bring with you from home must be
If necessary, the doctor will request consultation with           clean.
the physiotherapist.                                              - A tube of fluoride toothpaste (you will be given new
                                                                    toothbrushes in the clinic)
Social Worker                                                     - Sufficient loose-fitting clothing, preferably with a
Because an admission to hospital for a bone marrow or               zipper or buttons in front (in view of the Hickman /
stem cell transplant demands a great deal from you and              jugularis catheter)
your partner also mentally, you are entitled to help              - A housecoat
from a social worker. To explain what you can expect              - A pair of new, washable slippers
from this, there will be an introductory meeting with             - A comb and paper towels
you, and if you like, also with your partner during the           - Your hairpiece, if applicable
first days of your stay in hospital.                               - Recreational materials, such as: books, magazines,
The social worker can talk with you and help you cope               puzzles, games, embroidery material, videotapes,
with this difficult time in your life.                               music cassettes and/or CDs
He/she can also contact other organisations on your               - You can bring with you any mail, newspapers and
behalf, such as employers or schools, and help them                 magazines that are newly removed from their
understand your situation. After this first meeting, you             wrappings.


  University hospital Maastricht                              6
- A notebook computer / Play station, etc., if required          Children may come along to visit, provided they are
- Do not bring your own pillow                                   not sick, coughing or having a cold, and are able to
                                                                 follow hygiene regulations.
Mental and emotional stress                                      Flowers or plants are not permitted in the ward. All
                                                                 these guidelines can be found in more detail in the
During your stay you may get feelings of restlessness,           information folder provided in your room.
insecurity, claustrophobia, frustration, helplessness,
loneliness and boredom. As your stay extends itself,             ONE HINT: Do make sure that you keep enough time
these feelings may intensify.                                    for yourself and that you do not become overtired by
The planning of activities can help you get through this         too many visitors. It is advisable to arrange a specific
difficult period.                                                 time with the people who want to come and visit. It is
Do not be afraid to talk to somebody about these                 also good to have visitors who are able to sit with you
feelings!                                                        quietly and without talking.
This can be somebody from your own environment,                  Of course our work will continue as usual, also while
but you will also find people willing to listen to you            you have visitors.
within our own team. We are fully aware of the stress
involved in your disease, and see it as part of our              After the transplantation
commitment to give you support and to help you cope
with this.                                                       The next part of this brochure is intended as a
                                                                 guideline for use at home.
Your partner and loved ones                                      On the road back to a normal life, we want to give you
                                                                 some advice and guidelines to take home with you.
Also for the people close to you, this period will not
always be an easy one. After all, they want to help and          Release from hospital
support you, which will require a great deal of energy           You can be released from hospital once your bone
on their part. A feeling of helplessness is not                  marrow is again producing sufficient white blood cells.
uncommon in this situation, because there is not really          In addition, you must be able to eat and drink properly
much that one can do during this recovery period.                again and no longer have to depend on the IV drip for
However, just being there for the other person often             fluids or medication. If you are still dependent on blood
provides a lot of support in itself.                             or thrombocyte transfusions, you will take the
Your partner and/or loved ones may also feel the need            Hickman or jugularis catheter home with you.
to talk to somebody about these things. We therefore
offer the possibility of support by our team or social           Recovery period: leisure and work
workers.                                                         The fact that you are able to go home again does not
                                                                 yet mean that you are fully recovered. The recovery
Visiting hours                                                   stage can last several weeks to months; in your
                                                                 expectations you should take this into account.
Visiting hours at our clinic are 15.00 – 20.00 hrs (3 to 8
PM). This is in view of the well-being of our patients.          Now that you are home again, you can finally start to
Each patient can be visited by no more than two                  think again about things that have nothing to do with
persons at a time. The visitors are not permitted to             the hospital or sickness.
use the toilet in your room! We try to keep your                 Here we will impose as few restrictions as possible,
environment as clean as possible. We ask your visitors           because a social life is important to your recovery.
to cooperate with this. For three weeks following your           However, we do want to offer some practical advice
admission, your partner can use a discount card for the          that you should observe in the coming period.
parking lot, to be requested from the Administrative             - Carefully plan your activities
Management department. In addition he/she can get a              - Listen to your body! You may keep on feeling tired
discount at the restaurant. This can also be obtained              for a long time
from Administrative Management.                                  - For the time being, avoid places with lots of people in
                                                                   cramped spaces (such as public transport, the movie
The people who come to visit must not be sick them-                theatre, cafes, pubs, etc.)
selves (flu, cold or other infectious disease). They must           Gradually expand the range of your activities.
wash and disinfect their hands before entering the
room.


  University hospital Maastricht                             7
Polyclinic                                                       Reduced immunity
After you have been released from hospital, you will             Because your immunity, especially in the initial period
still need to visit the Internal Medicine Polyclinic             (first few months) at home, is not yet optimal, you will
regularly for checkups by your attending physician.              be more susceptible to infection; such as colds
When you are released from ward A5, the nursing staff            accompanied by fever.
will schedule your first check-up at the polyclinic.              How long this period of reduced immunity will last
                                                                 differs per person and per treatment; this will be
Doctor                                                           particularly during the period when you are prescribed
The doctor will evaluate your blood test results, use of         the immune-suppressant drugs (including
medication and physical condition, and will discuss any          Cyclosporine), or during the first twelve months
problems with you.                                               following a haploidentical transplantation. If you have
Depending on the outcome, he will schedule a new                 any questions about this, you can ask your doctor at
appointment in the shorter or longer term; also, you             the polyclinic.
may still be given blood or thrombocytes at the                  If you start running a fever, you may have to be
Internal Day Centre.                                             admitted to hospital briefly, to be treated with
                                                                 antibiotics or other medication. In case of fever or
Medication                                                       other unfamiliar or worrisome complaints, you should
Following an HLA-identical transplantation, you will be          always call your attending physician or the A5 ward.
prescribed one or two immune-suppressant drugs
(Cyclosporine (or Neoral), and sometimes also                    Central venous catheter
Cellcept (or Mycophenol Phenolate or MMF)), intended
to prevent graft-versus-host disease. It is essential that       After you are released from hospital, the Hickman of
you keep on taking them in the prescribed dosage and             jugularis catheter is usually kept in place for some time,
at the indicated times, since this reduces the chance of         in view of possible blood or platelet transfusions.
graft rejection, which is of the greatest importance to          If your blood test results are such that your doctor
you. Should this cause any problems whatsoever (such             does not expect you to need any more transfusions,
as vomiting or diarrhoea), please get in touch with your         the catheter can be removed when you visit the
doctor from the polyclinic. Cyclosporine may affect              polyclinic.
your appetite for food or drink. Try to drink at least           While you have the Hickman or jugularis catheter, it
1.5 to 2 litres of liquid a day. In addition, one or more        needs to be cleaned and flushed through every week to
antibiotics can be prescribed which are intended to              prevent clogging.
prevent certain infections.                                      When you leave the hospital, a first appointment for
After a haploidentical transplantation, no immune-               this is made at the Internal Day Centre.
suppressant drugs will be prescribed, since the risk of          You can make the next appointment yourself at the
graft-versus-host disease is virtually nil. This is due to       Day Centre.
the fact that no T-cells from the donor are
transplanted. This does lead to a heightened risk of             How do you clean the catheter at home?
infection, however, and you will be prescribed several
types of antibiotics for a prolonged period to prevent a         If the adhesive plaster stays on well, you don’t have to
number of infections.                                            do anything about the catheter between checkups. You
                                                                 can just wash and shower (if applicable) normally.
Donor lymphocytes infusion (DLI)                                 If the plaster detaches, you can change it in the way
Depending on the test results, your doctor can decide            you were shown; you are instructed how to change the
that another treatment with additional immune cells              adhesive plaster during your stay in the ward.
from the donor is necessary. DLI consists of one or              If the catheter aperture is red or you feel pain at the
more treatments using donor immune cells. The donor              point of the catheter, contact the Day Centre or your
is also asked to again donate cells through                      attending doctor at the polyclinic.
leukapheresis. This is a brief procedure: the donor only
has to come to the hospital (Dialysis ward) to donate            Blood transfusions
the cells.                                                       On the basis of your blood test results, you may
The cells are administered to you via an IV-drip, after          sometimes require blood platelets or red blood cells.
collection from the donor. You do not have to stay in            In this case, an appointment will be made for you at the
hospital for this; this procedure is done on an                  Internal Day Centre.
outpatient basis at the Internal Day Centre.


 University hospital Maastricht                              8
External changes                                                toothpicks. Here it is important to observe the
                                                                instructions with regard to brushing your teeth.
Skin:                                                           Continue with this as long as is necessary.
For some time your skin will remain drier and more              In some cases you may also be required to keep taking
sensitive than normal (this can last several months).           medication for your throat/mouth after leaving the
More pigmentation of the skin may occur, such as the            hospital.
knuckles of your hands, or your elbows. There is                If you have any questions about or problems with
nothing to be done against this. Avoid sunbathing as            regard to oral hygiene, you can always get in touch with
much as possible; also, we advise against the use of a          the oral hygienist.
sunbed.
Because sometimes the platelets take more time to               Nutrition
regenerate than the red or white blood cells, you will          In principle, you can start eating normally again once
still bruise easily; so take care not to bump into things       you are back home, unless you were already on a
or scratch yourself.                                            special diet before the transplantation, such as e.g. a
During your stay at the hospital you may have                   low-salt or low-fat diet.
developed a rash due to the radiotherapy, fever or              Do make sure that you eat healthy and varied foods;
hypersensitivity to certain medications. Your skin can          this will only benefit your recovery! Alcohol is
still feel itchy or painful, or show some discolouration;       permitted to a limited extent, except in combination
this will take some time to heal.                               with certain drugs; ask your doctor about this in
                                                                advance.
Nails                                                           Due to the chemotherapy, a change in taste or loss of
Chemotherapy slows down the growth of your                      taste may occur; you may dislike things that tasted
fingernails, and they may change in appearance or                good in the past, or vice versa.
consistency.                                                    Often, bitter tastes tend to dominate, while it is more
They may show discolouration, or sometimes even                 difficult to taste sweet things.
drop off. However, they will heal in time.                      This is accompanied by a heightened sensitivity to
                                                                smells, so that you often seem to ‘taste’ a certain smell.
Hair growth                                                     Experience has shown that during the first few weeks
In most case your hair will grow back after treatment.          you often have to force yourself to eat and drink. If you
However, the time this takes can vary from several              find that it is really almost impossible for you to
weeks to several months.                                        consume any food after the first few bites, try to eat
If you have had total body radiotherapy, your hair              small quantities more often during the day; the more
growth may have been permanently damaged.                       you eat, the better. During this period you really do
The new hair will generally be thinner, and may have a          not have to follow the guidelines for normal, healthy
different colour and/or structure than previously.              food; just eat whatever you feel like eating.

Body care                                                       The social worker
Usually, normal everyday physical hygiene is sufficient
once you are home again. Do take care particularly              The transplantation often followed by a period of
with the use of perfumed body care products, in view            uncertainty, when a lot of questions arise:
of the heightened sensitivity of your skin.                     - Will the disease stay away?
If you experience any skin problems such as itchiness,          - When will I be able to do my own housekeeping?
rashes etc., please contact your attending physician.           - Will I be able to get back to work?

Oral care                                                       Both you and your partner will have to get accustomed
By the time you go home most problems will have gone            to the new situation. Sometimes it is difficult to talk
away, but your mouth will remain vulnerable for some            about these changes; you do not want to make it
time. It takes time for the production of saliva to get         harder on the other person.
started, so you may still be bothered by a dry mouth.           Especially in the beginning you will often not yet have
For this reason it is important to continue with optimal        enough energy to do everything that you would like to
oral hygiene (also in view of good dental care). You            do. Sometimes this is difficult for others to understand:
taste may have changed for a long time.                         “After all, you are better now!”.
You can also, in consultation with your doctor, resume          By talking with the social worker, he/she can help you
the use of interdental brushes, dental floss or                  deal with these things by discussing them with each


  University hospital Maastricht                            9
other, and help you ask for understanding.                             made you infertile, the continued use of contraceptives
Also, the social worker can help you by talking with                   is always recommended. Do not hesitate to discuss any
you about your insecurity and fear of the future. If you               problems in this area with your doctor or nurse.
have any questions or problems concerning resumption
of your work or a possible reassessment of your                        When to contact the doctor/the
suitability for work, the social worker can help you                   clinic
with information or advice. In addition, he/she can
contact your employer or other institutions on your                    During your visits to the doctor at the polyclinic, you
behalf.                                                                can of course always ask any questions you may have.
If you would like to talk with the social worker, please               When you are released from hospital, you are given the
tell your attending doctor or the nurse; or contact                    date of your first appointment at the polyclinic. But
social work directly at the Patient Care department of                 when and for which problems should you contact your
Maastricht General Hospital.                                           doctor or the clinic? Below we give the main reasons
                                                                       to get in touch with your doctor or the clinic:
Physiotherapy
                                                                       - Temperature over 38.5 ºC or chills
You do not need to follow a specific exercise schedule                  - Persistent diarrhoea or vomiting (lasting more than
after leaving the hospital, unless expressly prescribed                  48 hours)
by the physiotherapist. Just start by resuming your                    - Skin problems such as a rash or itchiness
ordinary everyday activities at home. This will already                - Sudden severe pain
require more physical effort than you were accustomed                  - Nosebleeds
to in hospital. We recommend going for a walk or                       - Large bruises
bicycle ride every day; it is always better to do this                 - Shortness of breath
twice for a short while than once for too long.
Over the weeks or months, try to do this for longer                    If your problems occur during business hours (between
and longer until you are back at your old level. You may               8:30 and 17:00 hrs. – 8:30 AM and 5 PM), always
also be eligible for our Recovery and Balance exercise                 contact the Cancer Centre Polyclinic first.
programme. Ask your attending doctor or nurse about                    Outside office hours and during weekends or holidays,
this programme.                                                        you can contact the A5 ward.
                                                                       Your family doctor/GP will not be involved, because on
Sexuality                                                              the whole he/she is too unfamiliar with the treatment
                                                                       of patients who have had a bone marrow or stem cell
Medically speaking, there is no reason not to have                     transplantation.
sexual intercourse once you are home again.                            Naturally, your GP will be kept informed of your
However, due to the side effects of the chemotherapy                   treatment.
and the use of other medication, your sexual appetite
may have diminished. Your need for tenderness and                      Contact Group
cuddling, on the other hand, may have increased.
With women it is possible that, due to the                             There is a national Patients Contact Group for people
chemotherapy, the vaginal wall may remain drier than                   who have undergone a bone marrow transplantation.
normal for some time. This is often easy to cure by                    Each region has its own contact person. The nurses at
means of a lubricant (e.g. Sensilube), available at your               your ward or polyclinic can give you an information
chemist or pharmacy.                                                   leaflet of this contact group.
If -in addition- you have also had total body
radiotherapy as part of your treatment, your vaginal
elasticity may also be diminished.
After treatment your periods will most likely stop. It is
also possible, however, that some menstrual blood loss
will still occur, but this is generally likely to be irregular.
If needed, your attending doctor may prescribe
medication to try to prevent bleeding. If you go into
menopause, hormone replacement therapy may be the
best solution for you.
As long as it is not certain that your treatment has


  University hospital Maastricht                                  10
In conclusion
Here at the stem cell transplantation team, we have
made every effort to offer you the best possible
support, information, and care. We are fully aware of
the fact that you have undergone a very intensive and
demanding treatment. If anything is unclear or if you
have any questions or remarks, please do let us know.
Addresses and telephone numbers

Name               Address          City                 Phone number
Maastricht         P. Debeyelaan 25 P.O.Box 5800,        +31 43 3876543
General                             6202 AZ Maastricht
Hospital
A5 Ward                                                  +31 43 3874510
                                                         +31 43 3876510

Internal                                                 +31 43 3874250
Medicine Day
Centre
Stem Cell                                                +31 43 3875009
Transplantation                                          +31 43 3877025
Coordinators
Cancer Centre                                            +31 43 3874600
Polyclinic

Integral           Parkweg 20       P.O.Box 2208,        +31 43 3254059
Cancer Centre                       6201 HA Maastricht
for Limburg
Province (IKL)
Patient                                                  +31 43 3874567
Information Dpt.
at Maastricht
General
Hospital
Social Work                                              +31 43 3875118
Dpt. at
Maastricht
General
Hospital
Oral Hygienist                                           +31 43 3877619

Bone Marrow        Plesmanlaan 125 1066 CX
Transplant                         Amsterdam
Contact Group




 University hospital Maastricht                                           11
Appendix 1: Cleaning and Dressing the Hickman/
Jugularis Catheter Insertion Opening at Home

The insertion opening should be cleaned and dressed if
the adhesive plaster has become wet or has detached.
What you will need

- Sterile gauze pads (10 by 10 cm)
- Transparent adhesive foil
- Disinfectant fluid
- Betadine scrub
- Broad-sized Micropore

What to do
Cleaning and dressing can be done by the patient him/
herself or by the visiting nurse.

• Wash your hands with Betadine scrub and dry them.
• Remove the plaster
• Open the wrapping containing the gauze pads in a
  sterile way
• Pour a little disinfectant fluid on the gauze pads
• Using one hand, lift the catheter as high as possible at
  both ends, so that the underlying skin is exposed for
  disinfection.
  - Clean and disinfect the skin with the other hand as
    follows:
  - Using a pad of gauze, clean and disinfect the
    insertion opening and the catheter over a area of
    appr. 15 cm.
• Using a new gauze pad, do the same with the
  surrounding skin.
• Let the disinfectant dry
• Paste the transparent adhesive foil over the insertion
  opening
• Fix the catheter using the narrow-sized Micropore
• Paste a strip of broad-sized Micropore on to the
  plaster
• Attach the catheter on to this
• Wash your hands.




  University hospital Maastricht                             12
Appendix 2: Cleaning and Dressing Hickman/
Jugularis Checklist

Day                     Date          Spraying                 Changing               Changing Plugs          Spraying
                                      Hickman/Jugularis        Plaster                                        Porth-a-cath

          /                       /   Once a week              Once every two weeks   Once every four weeks   Once every four weeks




 University hospital Maastricht                           13
Appendix 3: List of Questions for Visit to Polyclinic




 University hospital Maastricht                         14
Appendix 4: Blood Type and Transfusion Survey

Blood Type:

Date of transfusion:   Remarks



Date of transfusion:



Date of transfusion:



Date of transfusion:



Date of transfusion:



Date of transfusion:



Date of transfusion:



Date of transfusion:



Date of transfusion:



Date of transfusion:



Date of transfusion:



Date of transfusion:



Date of transfusion:



Date of transfusion:



Date of transfusion:



Date of transfusion:



Date of transfusion:



Date of transfusion:



Date of transfusion:




 University hospital Maastricht                 15
Contact Information
Visiting address:
P. Debyelaan 25, District 29, Maastricht
[the Netherlands]

Correspondence address:
P.O.B. 5800
6202 AZ Maastricht

T: +31 43 387 6543

W: www.azm.nl

E: Info.Patientenvoorlichting@mumc.nl

Compiled by:
Erwin Vanderhoeft, Head of Department A5
Marielle Janssen, Transplants Coordinator




 University hospital Maastricht             16

				
DOCUMENT INFO
Shared By:
Categories:
Tags:
Stats:
views:4
posted:9/28/2012
language:Unknown
pages:16