Allogeneic Bone Marrow & Peripheral Blood Stem Cell Transplant
This information has been designed to discuss and explain various aspects of bone marrow and peripheral blood stem cell transplantation. In some areas only general information is given. No two patients are alike and it is therefore impossible to answer every persons individual questions. Specific individual treatments may vary from those outlined on this page. Please ask your doctor or nurse if you have any questions or require more information.
General aspects of transplantation
What is a transplant?
To understand transplantation you need to know something about the function of the bone marrow. The bone marrow is the soft material inside the cavities of bones which makes various components of the blood and immune system. Certain cells known as stem cells are usually found in the bone marrow, they produce the following components of the blood:
Red blood cells
Red blood cells act as a transport system carrying oxygen and nutrients around the body. When your red blood cell level is low, you experience a condition called anaemia. This is corrected with transfusions of red blood cells.
White Blood Cells
White blood cells help prevent and fight infection. There are several types each with a different function. The white cell most active in fighting infection is called the neutrophil. When your white cell count is low you are at increased risk from infection.
Platelets are cells which help control and prevent bleeding. A low platelet count increases the risk of bleeding and bruising. This can be corrected by platelet transfusions. Chemotherapy and radiotherapy suppress the production of all cells in the bone marrow.
Following conventional doses of treatment the bone marrow recovers, given time, and produces normal numbers of blood cells. However high dose chemotherapy and radiotherapy, given to increase the chance of curing the disease, suppresses the function of the bone marrow so severely that it can not recover. Insufficient numbers of blood cells are then produced. This would result in the patient becoming anaemic and having an increased risk of life threatening infection and bleeding.
It is possible to restore bone marrow function by transfusing bone marrow or peripheral blood stem cells collected from a donor. These are transfused after the high dose therapy is given. When the transplanted cells establish themselves in the bone spaces they restore production of normal blood counts. This procedure is called either a bone marrow transplant or a peripheral blood stem cell transplant.
Types of transplant
An allogeneic bone marrow/peripheral blood stem cell transplant replaces diseased bone marrow with new, healthy, cells taken from a donor. Potential matched donors are identified by a complicated system of blood tests. A donor is someone whose tissue type most closely matches the patients. This person is usually a brother or sister. Alternatively, a donor may be found from a national registry.
There are various types of transplant, each defined according to the source of the stem cells transplanted.
Bone Marrow Transplant (BMT)
Bone marrow is taken from the donor and is transfused transplanted into the patient after the patient has received high dose chemotherapy and/or radiotherapy. After a period of time the bone marrow engrafts (grows) and normal blood counts are restored.
Peripheral Blood Stem
Cell Transplant (PBSCT)
PBSCT is a relatively new form of transplantation, which in some patients can be used as an alternative to bone marrow transplantation.
Only very small numbers of stem cells are usually found in peripheral blood. Following injections of growth factors large numbers of stem cells can be pushed from the bone marrow into the peripheral blood. These can then be collected by a machine, similar to a kidney dialysis machine, and stored. Following high dose chemotherapy and/or radiation treatment the stem cells are re-infused transplanted. After a period of time the stem cells engraft (grow) and normal blood counts are restored.
The transplant team will discuss with you which method of transplantation is selected for you.
Identifying a donor is carried out by blood tests alone. This is a complicated process which identifies the tissue type of each individual. The donor is either a family member (brother or sister) or an unrelated donor (identified from a national register).
He or she will be given a thorough medical check up to ensure that there is no risk to his/her health. This will be performed at an outpatients appointment approximately three to four weeks before the planned transplant date. Various blood tests will be taken and a chest X-ray and ECG will be carried out.
There are two methods of obtaining stem cells (the cells used for transplantation) from a donor. The doctor will explain which method will be used.
Bone marrow donation
The donor is assessed by the transplant team in the Outpatient Department. Various blood tests are taken. A unit of blood is removed and stored (in the same manner as blood donation). This is returned at the time of the operation (see pages 1415 for more detail) when the bone marrow is harvested. This ensures that the donor is not exposed to any significant risk. The donor will be admitted for 48 hours for the bone marrow collection. Afterwards there is no restriction on his/her activity, although he/she will be advised to take an extra week off work. He/she will feel some pain in the area from which the marrow has been taken and may need to take mild painkillers for a few days.
Peripheral blood stem cell
Again the donor is assessed by the transplant team in the Outpatient Department. He/she is given an injection of a growth factor drug twice daily for four days prior to the collection of the stem cells. He/she is then admitted to the ward and the stem cells, circulating at very high levels in the blood stream, are collected by a process of cell separation using a machine similar to a kidney dialysis machine. This is a complex procedure which will be explained in detail by the intravenous nurse specialists. This procedure will take one to two days.
Why do I need a transplant?
Transplantation may be a treatment option for patients when:
- malignant disease affects the function of the bone marrow;
- the bone marrow is not functioning, e.g. aplastic anaemia;
- it is necessary to give high doses of chemotherapy/radiotherapy in the attempt to cure certain tumours.
Other factors that the doctors will take into account when considering whether to recommend a transplant is the age and the general health of the patient as the procedure is demanding, both physically and psychologically.
What are the risks of transplantation?
The main risks associated occur during the period when your marrow is recovering, i.e. two to three weeks after the transplant. At this time, you are at risk from potentially life threatening infections and bleeding .
Allogeneic transplantation (from a donor) carries a higher risk because of the possibility of graft versus host disease and graft rejection. Immunosuppressive drugs are given to prevent graft versus host disease and rejection, but a side effect of these drugs is increasing the susceptibility of the patient to infection. Unfortunately, despite the powerful effect of the high dose chemotherapy/radiotherapy, this treatment is not a guarantee of cure. Some patients will relapse following transplantation.
The treatment may be unpleasant and carry significant risks but there is also the possibility of great benefit.
There are a variety of blood tests and investigations which you will be required to undergo prior to the doctor confirming your suitability for transplantation. The combination of tests will include some or all of those listed below. These will be organised by the BMT Co-ordinator, after discussion with you, at your clinic appointment. The tests will be completed on an outpatient basis and there is no need for you to be admitted to the hospital. The results will be used by the doctors to select your treatment plan of chemotherapy/radiotherapy.
Various routine blood samples are taken at the clinic appointment. These include a full viral screen which includes HIV and hepatitis tests. These are routine blood tests for anyone contemplating transplantation.
A bone marrow sample or a CT scan may be performed at some point to assess the status of your disease.
Glomerular filtration rate (EDTA)
This investigation measures how your kidneys are working. You will be given an injection into a vein in the arm. A blood sample will then be taken four hours later. You may leave the department between the injection and the blood sample.
Cardiac blood pool
This test measures how your heart is functioning. The investigation involves two injections into a vein in your arm at an interval of 20 minutes. A series of pictures of the heart is then taken with a gamma camera while an ECG recording is made. You will be lying at rest on a couch.
Lung function tests
This test measures various aspects of your lung function. You will be required to blow or suck air and hold your breath at various points. The test takes approximately 20 minutes. If you normally take inhalers you should inform the technician of this.
Female patients will be offered a cervical smear test which would be repeated at regular intervals following the transplant. This is part of a study to ascertain if those women who receive immunosuppressive therapy are at increased risk of cervical cell changes.
Some patients will be required to have a complete dental examination. Decayed teeth and gums can be a common source of infection in patients undergoing high doses of chemotherapy and/or radiation therapy. It is important that any potential source of oral infection be treated before your transplant. If necessary the doctors will refer you to the Department of Oral Surgery.
Some patients will already be infertile as a consequence of previous treatment. If you are not already infertile it is very unlikely that you will be able to have children following transplantation. There are some rare reports of patients recovering fertility but this seems dependent on their sex, age at transplant and previous therapy.
For men there is the option of sperm banking. For women, unfortunately, the storage of eggs is more difficult. There is the possibility of storing embryos, i.e. eggs fertilised by sperm. If fertility is an issue you must discuss this with a member of the transplant team before your admission to hospital.
This can be a major cause for concern. A social worker is available to offer guidance and support related to this issue. You may well be entitled to help that you were unaware of. The Bone Marrow Transplant Co-ordinator will be happy to arrange an appointment for you if required.
Alopecia (total hair loss) is an inevitable side- effect of high dose therapy. The loss is usually temporary and the hair will start to grow back within two to three months of completing therapy. The loss of hair can be very distressing. Wigs are available, (free to NHS patients), and if you have not already got one you may wish to arrange this before your admission to hospital. Alternatively, you may wish to purchase one from a hairdresser or department store. It is also advisable to bring in hats, scarves or turbans as you may find that it is too hot to wear your wig in hospital.
After your discharge from hospital you may be prescribed numerous medications. Unless you are exempt from charges this can become very expensive. You can obtain a form from your pharmacist which will enable you to apply for a card which, for a set fee, will cover all prescription charges for four months. Ask the Bone Marrow Transplant Co-ordinator if she would advise you to obtain one of these cards.
If you do not already have a central line, prior to starting your treatment you will have a central venous catheter inserted. This is a soft, flexible, hollow tube inserted through the skin of your chest into a large vein. The purpose of this is to make the administration of your treatment easier. There are several advantages to having line. It can be used to administer all cytotoxic drugs, blood products and other drug therapies you may require. In most people, blood samples can be taken via the line, however some may still need to be taken from your arm.
The line is usually inserted on the ward by a doctor or in X-ray by a radiologist. Local anaesthetic will be injected into the insertion site to numb the area. It is inserted into a central chest vein through a small incision just under your collar bone. The line is then stitched in place and an X-ray is taken to ensure that it is in the correct position. The line, if uncomplicated by infection, can stay in place for weeks or months if necessary. You may go home with the line still in place and will therefore be taught how to care for it by the nurses on the ward prior to your discharge. Stem cell harvest (only necessary in a minority of patients). Prior to the transplant some patients will have stem cells collected from either the bone marrow or peripheral blood stream. This process is termed a harvest.
Bone marrow harvest
This is always carried out under a general anaesthetic in the operating theatre. The bone marrow is taken from the hip bones and occasionally the breast bone (sternum). Approximately one to two pints of marrow is collected. The volume depends on the number of cells required. The marrow is then taken to the haematology laboratory to be stored.
After the harvest you will receive two units of blood to replace the volume of marrow removed. Most people experience some discomfort for two to three days. This is usually well controlled by mild painkillers. If you are not going to proceed immediately on to transplantation, you should be well enough to go home the day after your harvest.
Peripheral blood stem cell harvest
Only very small numbers of stem cells are usually found in the peripheral blood. To enable us to collect sufficient numbers of stem cells for transplantation, it is necessary to administer a single dose cyclophosphamide chemotherapy followed by daily injections of growth factors. Over a period of approximately ten days, high numbers of stem cells are produced and subsequently move from the bone marrow into the peripheral blood. These can then be collected, stored and subsequently used for transplantation. This procedure necessitates two short admissions to the ward.
A single dose of cyclophosphamide chemotherapy is administered over one to two hours as an intravenous infusion. You will receive additional intravenous fluids for a period of approximately 24 hours. The side-effects of cyclophosphamide chemotherapy are:
- nausea and vomiting (usually well controlled by anti-sickness drugs);
- alteration in taste (this will return to normal in time);
- hair thinning or alopecia (total hair loss).
The day after the chemotherapy you will be given an injection of growth factor (GCSF). These injections are given by small needles into the fatty tissues. You will need to continue these daily until re-admission for stem cell collection. The nurses will teach either you, or a member of your family, to give these injections. If this is not possible, alternative arrangements can be made.
You will then be discharged home for a period of approximately 10 days. You will be given specific instructions by the ward staff concerning potential side-effects whilst at home. They will also instruct you how to contact the ward if necessary. During these ten days your blood count needs to be monitored daily. The Bone Marrow Transplant Co-ordinator will make the necessary arrangements for this prior to your admission.
Once the white blood cell count has reached a sufficiently high level, you will be re-admitted to the ward for the stem cell collection. This will be confirmed at very short notice (1224 hours) by telephone.
The stem cells, circulating at very high levels in the peripheral blood, are collected by a process of cell separation using a machine similar to a kidney dialysis machine. This is a complex procedure which will be explained in detail by the intravenous nurse specialists. This procedure will take two to three days. During this admission you should feel fit and well, and suffer no side-effects from the treatment. Your stem cells are collected and are then stored in the freezer.
This is the terminology used for the chemotherapy and/or radiotherapy prescribed to treat your disease and permit engraftment of the transplanted cells. The chemotherapy and/or radiotherapy is given to you during the first week of admission. During this week you should feel well enough to get up, shower and dress and you may go off the ward for short periods if you wish.
There are many side effects of chemotherapy and radiotherapy. The majority of these can be prevented or treated, and therefore made more tolerable. They will occur at different times during your admission.
This is a side-effect associated with chemotherapy and total body irradiation. However, it can usually be controlled, or greatly reduced, by using anti-emetic (anti-sickness) drugs.
Radiotherapy and certain cytotoxic drugs can cause this to occur during the first week of admission. To ensure it is treated promptly, inform the nurses as soon as it occurs. When the doctors know that there is no infection causing the diarrhoea, they will prescribe medication to reduce the symptoms. There are many other side effects of chemotherapy and radiotherapy but these tend to occur after the transplant i.e. during weeks two to four of admission.
This takes place approximately 24 hours after completing chemotherapy. The day of the transplant is called day 0.
Your donor is admitted to hospital the day prior to your transplant (usually a Sunday) and his/her bone marrow/peripheral blood stem cells are harvested the following morning. When the stem cells are taken from the donor they may need to be treated in the laboratory prior to infusion into you. These are given to you via your central line in the same manner as a blood transfusion and whilst in progress the nurse will record regular observations. This process takes two to six hours depending on the volume of cells to be given.
This is a drug given to suppress your immune system, to prevent rejection of the graft and graft versus host disease. It is commenced 24 hours prior to you receiving your transplant and is given intravenously via your central line. It is continued throughout your treatment and for at least six months after transplant. Prior to your discharge home you will be commenced on tablets of Cyclosporin to replace the intravenous infusions.
Cyclosporin is known to cause side-effects. These include:
- raised blood pressure (for which you may require tablets);
fine tremors affecting your hands;
altered kidney function.
You will be carefully monitored for the development of any of the above and treated if necessary.
You may experience some or all of these at various times throughout your admission.
Alopecia (total hair loss)
This is an inevitable side effect of all conditioning regimens. Loss of body hair occurs initially from the head but also from the eyebrows, eyelashes, underarm and pubic area.
The loss of hair can be distressing. It often falls out in clumps from the head when brushed or is rubbed off on your pillow. Some people will prefer to allow it to fall out slowly whereas others will prefer to have it shaved of as soon as patching occurs. The nurses on the ward can do this for you if you wish.
As stated previously wigs are available, free to NHS patients, and if you wish this can be arranged during your first week of admission. Alternatively, you may wish to purchase a wig from a hairdresser or department store prior to your admission. You should also bring in hats, turbans and scarves in preparation for the hair loss.
The loss is temporary and regrowth will start with the head and underarms initially, approximately two to three months after completing chemotherapy. Eyebrows and eyelashes grow more slowly and regrowth may take longer. Re-growth may be slightly different in colour and texture, initially.
NB One drug called Busulphan, which is given to certain patients may cause permanent Alopecia. This risk should be discussed with you in detail by a member of the transplant team.
Mucositis (Pain and Ulceration of Mouth and Throat)
As a consequence of the conditioning therapy, your mouth and throat may become tender, swollen and ulcers may form. This can be a very distressing side-effect. Unfortunately it is impossible to prevent, but usually the associated pain is controlled by oral or intravenous pain killers. You can help to reduce your discomfort and the risks of infection by performing mouth care regularly, as instructed by the nurses. When suffering from mucositis you will probably find that your appetite decreases and you may be unable to eat and drink. A dietician is available to give you advice and to supply high protein/high calorie dietary supplements. If you are unable to eat, it may be necessary to give you artificial feeding in the form of Total Parental Nutrition (TPN). This is an infusion of nutritional supplements given to you through your central line. It is a common occurrence and a specialist nutrition team will liaise with the medical staff to devise an appropriate feeding regimen for you.
As stated previously, this can occur at the time of the conditioning regimen itself. Additionally it might occur at any time throughout your admission or indeed even after you have been discharged from hospital. Medication can be prescribed to reduce the symptoms, if it is known that infection is not causing the diarrhoea. To ensure that it is treated promptly please inform someone as soon as it occurs.
As the chemotherapy and radiotherapy kills the rapidly dividing cells in the bone marrow we expect to see a drop in the number of circulating white and red blood cells and platelets shortly after treatment. Your new bone marrow or stem cells will establish themselves and slowly regenerate. The process of regeneration can take between two to five weeks, depending on the type of transplant. This is termed engraftment.
You will certainly feel tired for a variety of reasons, one of which is that you will inevitably become anaemic, periodically, whilst your bone marrow is not making adequate amounts of red blood cells. This will be corrected by blood transfusions as necessary. It is not uncommon to require blood transfusions after discharge from hospital.
Whilst your bone marrow does not produce platelets you may find that you bleed very easily, from your nose or gums or develop a petechial rash. Petechiae are areas of small purple/red spots (tiny bruises) which may develop on your body when your platelet count is very low. Platelet transfusion will be prescribed to prevent bleeding until your transplanted bone marrow engrafts and produces sufficient number of platelets. These transfusions may need to continue following your discharge from hospital.
With a reduced white cell count you are at an increased risk of infection and fevers. There are many routine precautions taken to prevent infection including nursing you in a side room, restricting your diet, strict mouth care and prophylactic antibiotic medication.
Despite these precautions almost every patient will develop a temperature at some point during their admission. If your symptoms suggest the presence of infection a series of observations, blood tests, and investigations will be taken. If these indicate infection, you will be given intravenous antibiotics. This process may occur several times during your admission.
There are numerous nursing and medical interventions needed while your blood count is low including blood products and antibiotic infusions, regular observations of your temperature and blood pressure as well as daily examinations and investigations.
This occurs in only a small number of patients. It is caused by the chemotherapy/radiotherapy.
The disease affects the liver and results in abnormal liver function. This, in turn, causes jaundice (yellowing of the skin, eyes and urine). The disease can be treated, but in a proportion of patients may prove fatal.
Having a transplant is very demanding, physically and emotionally. Your family and friends too, may find this a very stressful time. You are likely to experience a wide range of emotions during your hospital admission such as anger, fear, boredom, frustration, depression, and tiredness. These feelings happen to everybody in varying degrees and can be complicated by circumstances at home. You should not be too concerned; there are various people who may be able to help you e.g.. the nurses on the ward, family, friends, social worker, counsellors, BMT Co-ordinator, and if necessary physiologists and specialists. If you have particular concerns before your admission for transplant it may be helpful to talk to someone who has already undergone this treatment. The BMT Co-ordinator may be able to arrange this if you think it would be helpful.
The term engraftment is used to describe the process of bone marrow recovery and the production of sufficient neutrophils to fight infection. This process occurs at various times, depending on the type of transplant. Following Allogeneic transplantation engraftment occurs approximately three to five weeks after the transplant.
During this period, blood tests are taken regularly to assess when you need blood and platelet transfusions and determine when engraftment occurs.
This can mean the waiting period is boring, frustrating and difficult to tolerate. Some of the side effects of treatment are at their worst during this period, e.g. sore mouth and infections.
You will probably find that your powers of concentration become very much reduced at this time. We suggest that you bring plenty of things to help pass the time, e.g. books, videos, knitting, sewing, or model making. Most people do feel well enough to get up, shower, dress, chat with visitors etc. Family and friends can organise a rota for visiting to ensure that only two to three people visit per day.
Your blood cell count should slowly start to recover and when your white cell count has recovered sufficiently and there are no other complications of transplantation the doctors will discuss possible discharge dates with you.
Allogeneic transplantation carries the risk that cells from the donor (graft) will react against the patients tissues (host). This is called Graft versus Host Disease (GvHD). Patients are given a drug, Cyclosporin A, before and after transplantation to prevent GvHD. But, despite this a percentage of patients will develop this complication. There are two types of GvHD :
Acute GvHD this develops in the first 100 days after transplantation.
Chronic GvHD this develops > 100 days after transplantation
There is a possibility you may develop either one, or both forms of GvHD. If GvHD occurs it does not mean the transplant has failed. It may even be of benefit, as some cells involved in the reaction may also attack any diseased cells that have survived the treatment.
The tissues GvHD most commonly affects are:
skin, causing a mild to severe form of
the gastro intestinal tract, causing mild to severe diarrhoea and abdominal pain;
the liver, causing abnormal liver
The treatment of GvHD is high dose steroids. If you do develop this complication it will be discussed in more detail at the time.
The expected duration of hospital admission and absence from employment
These are general guidelines only. Each patient will differ from another. Your return to work should be discussed with the doctor. The average inpatient admission following transplantation is :
related donor four to five weeks
unrelated donor six to eight weeks
Every patient will need a period of recovery after discharge from hospital. Again, each patient will differ from another. The recovery following allogeneic transplantation does take time. One should plan for approximately six months absence from work.
The role you play during your admission
We cannot predict which of the side effects you will have or how serious they will be. There are medications we can give to try and remove some of the symptoms. It is important that you tell us how you are feeling. In this way, you can help us to care for you.
The focus of care is engraftment (new growth) of the bone marrow. Before engraftment, your white cell count drops to as low as zero. This is termed neutropenia. Whilst neutropenic your resistance to infection is low. There are many measures which you can take to reduce the risk of infection developing.
Lying in bed for long periods can increase your risk of developing chest and urinary tract infections. If you are active you will be able to participate in your own care. It is very easy in hospital to feel that your life has been taken over by your disease and nursing/medical staff. This can make you feel helpless and frustrated. Keeping active getting up and dressing in day clothes each day taking advantage of the exercise bicycle available on C10 and participating in your own care can give you back a little control over your daily routine.
This involves being particularly careful about hygiene measures you probably already take, i.e. showering daily, changing clothes (day and night) daily, wearing slippers/shoes when out of bed and thoroughly washing and drying hands before eating, touching your central line, doing your mouth care or after using the toilet/commode.
One source of infection is certain foods and drinks. Food from the kitchen should be eaten straight away as it cannot be reheated. Ready prepared foods such as frozen pizza or shepherds pie should be of a well known brand and should be stored and cooked (following instructions on the packet) well before the best before date.
If you are unable to eat your meal, inform your nurse. An alternative meal or high calorie drinks may be provided. If you are unable to maintain adequate nutritional intake, the doctors may prescribe artificial feeding. This is called total parenteral nutrition. It is a carefully prepared combination of proteins, sugars and fats which is given as an intravenous infusion.
The chemotherapy/radiotherapy may alter your taste sensation, reduce the amount of saliva produced and affect your appetite. One or more of these problems may continue after you have been discharged from hospital. To prevent significant weight loss, it is important that you inform a member of the transplant team as early as possible. The dietician will be contacted and will be able to advise you appropriately.
Foods to avoid with a low white cell count:-
Foods best to avoid
Freshly cooked hot meat/ poultry and vacuum packed cold meats / poultry.*
Raw or partly cooked meat / poultry /cold meats, e.g. chicken, pork, salami (sold loose), pate and pork pies.
Freshly cooked fish*.
Tinned fish or tinned meat *.
Ready made cook / freeze or cook / chill meals, (Marks and Spencer only )*.
Shellfish, e.g. prawns, shrimps, crab.
Raw fish, e.g. sushi.
Hard boiled eggs or well cooked omlette and scrambled eggs.
Products containing uncooked eggs, e.g. home-made
mayonnaise, meringue, mousse, cheesecake.
Pasteurised / sterilised / UHT milk*.
Unpasteurised milk-cows, goats, sheep.
Tinned evaporated / condensed milk *.
Skimmed milk powder in cooking.
Baby milks -ready to feed.
Butter / margarine -pre -packed portions (in hospital ).
Hard cheeses (cooked or individually wrapped)
Processed cheese (individually wrapped )
e.g. Dairylea triangles, plain Philadelphia.
Pasteurised youghurt / fromage fraise and dessert*.
Ice craem -individually wrapped portions from major
producers e.g. Walls, Lyons Maid.
Soft and ripened cheese eg cottagecheese, cream cheese,Brie,Camembert. Blue cheeses, eg Stilton, Danish Blue .
Large tubs / jars of cheese spread .
Live yoghurt ,fromage frais.Artificial cream / topping.
|Bread - Cereals
Bread / chappatis / pitta .
Breakfast cereals, eg cornflakes, branflakes,Weetabix,
Porridge. Pasta / Rice .
Cereals containing nuts and dried fruit, eg museli.
|Fruit and Veg
Cooked or tinned fruit and vegetables, potato.
Well cooked pulses, eg baked beans, lentils.
|Fruit and Veg
Fresh raw fruit.
Fresh raw salad vegetables,e.g.tomatoes, lettuce,
cucumber, coleslaw, potato salad.
Freshly baked / tinned puddings* and cakes e.g.rice pudding, custard sauce, sponge, fruit cake, ready prepared custards*.
Jellies - made up in individual portions.
Individual tubs of mousse, fruit fools, jelly, fresh cream trifle.
Cakes and puddings decorated with dried fruit.
Puddings made with cold milk,e.g.Angel Delight,
|Sweets - Snacks
Jam / marmalade - individual portions whilst in hospital.
Sweets, e.g. boiled sweets, toffees, mints, plain or milk
chocolate - individual double wrapped portions, e.g.
Funsize Mars, Penguin, Kitkat, Club (well known brands).
Soups, tinned * / dried / home-made.
Crisps - individual portions.
Dry roasted peanuts - individually wrapped .
Crackers / biscuits - individual portions .
|Sweets - Snacks
Large packets of biscuits open to the air.
Cream filled chocolates,e.g.orange or coffee creams.
Chocolate containing nuts or dried fruit, e.g. Bounty,
Fruit & Nut, Snickers.
Tap water- allow tap to run ideally for 3 minutes first.
Tea / coffee / Maxpax drinks.
Canned / UHT tetra pak drinks e.g. fruit juice, squash*.
Canned fizzy drinks -pour into a glass.
Alcohol - (speak to your doctor first), e.g. wine, spirits,
tins of beer, cider, lager.
Ice - only from the ward.
Large carton / bottles of sqash or fruit juice.
Draught and bottled beer, cider and lager .
Complan / Build up, made up and drunk in less than two hours.
Ensure Plus* , Fortisip*, Maxijul *, liquid Polycal*.
Maxijul powder - sachets or small tubs.
Spicy dishes - e.g. curry, chilli .
Jars or cans of baby food *.
Uncooked herbs and spices, e.g. pepper.
Mouth care Inflammation and ulceration of the mucosal membrane (lining of the mouth and gastrointestinal system) will lead to pain and discomfort. It also causes susceptibility to infection. Good mouth care helps to keep your mouth clean, moist and comfortable. It will also help reduce the risk of developing an oral infection.
We advise you to adhere to the following guidelines.
1. Use a small headed, soft toothbrush and toothpaste for cleaning your teeth. Use gentle horizontal strokes to protect delicate gums. If your gums become sore, use mouth washes only.
2. If you wear dentures, they should be removed at night, cleaned and then soaked in Corsodyl. It may also be necessary to remove them if you suffer from mouth ulcers (remember to remove them prior to using your mouth wash).
3. After cleaning your teeth, rinse your mouth thoroughly for one minute using one capful of Corsodyl solution. Then spit out the solution do not swallow.
Mouth care should be performed four hourly initially and two hourly when you become neutropenic (your nurse will inform you of this) or if your mouth becomes sore.
When your mouth becomes sore you can use an additional mouthwash called Difflam. This has a numbing effect and can be used before washing with the Corsodyl. It is not a substitute for Corsodyl as it has no antibacterial properties.
Soluble Paracetamol mouth wash is fairly effective for a sore mouth and may be used in conjunction with Difflam and Corsodyl. Paracetamol gargles should not be swallowed as it may mask a fever.
If your mouth remains painful do not hesitate to tell the nurse who is looking after you.
You will be prescribed various medication to help prevent infection (antibiotics, anti viral drugs and anti fungal drugs). These will vary from patient to patient. The nursing staff will be able to explain the use of each. It is important to take the tablets prescribed to you. If you have any problems taking them or you do not understand the reasons for taking them, please ask one of your nurses or your doctor.
Fresh flowers, pot plants and fresh fruit are not permitted on the unit because they carry bacteria. You are allowed silk flowers and can eat tinned fruit. Visitors should wash their hands with Hibisol before entering your room. People with colds, flu or any other infection are not allowed to visit, neither should people who have been in contact with shingles, chicken pox, measles or any other childhood diseases.
Some infections cannot be prevented despite all precautions. Whilst neutropenic any symptoms of infection are noted and treated promptly.
The medical and nursing staff will be observing closely every day for signs of infection e.g. raised temperature, pulse and low blood pressure, the condition of your mouth is inspected and regular samples and specimens are taken.
You can help by reporting any symptoms that could suggest an infection for example a sore throat, feeling hot or shivery, a sore central line site, diarrhoea or pain on passing urine.
We are aware that you may be overwhelmed by the volume of information given. We encourage you to ask your doctors or nurses any questions you might have concerning this information.
Return home following a transplant is a very special time for you and your family. It may be both exciting and worrying. Having spent many weeks in hospital most patients feel a degree of anxiety. Family members, too, may be concerned with the responsibility of caring for someone without the constant presence of hospital staff. Feeling confident and comfortable at home is a process that takes time. The need for continued precautions in the months following transplantation may add stress to your family life.
This is a time of convalescence and recovery. You and your family may expect you to feel and act as you did before the onset of your illness and the beginning of your treatment. This will not happen immediately. Many patients have feelings of fatigue and weakness and many also have a decreased appetite. If will take time to regain your strength. Please remember, during this stressful time, you can always phone and discuss problems or ask any questions you may have.
When you are discharged from hospital your care will continue on an outpatient basis. An appointment date and time will be given to you prior to discharge from Ward C10. The objectives of your clinic visits are:
1. Checking your physical and mental
2. Taking and monitoring blood samples.
3. Checking for any signs of infection
4. Altering any medication you may be taking.
5. An opportunity for you to ask questions.
If you require hospital transport please speak to nursing staff on C10, Maggie (C10 Ward Clerk), or the out-patient reception desk. To provide hospital transport we usually require at least 48 to 72 hours notice. If you find it difficult to meet the cost of travelling to outpatient appointments, please ask to be referred to a social worker who may be able to help.
If anything is particularly worrying you, or if you have a specific problem, please do not hesitate to discuss this with either the doctor, BMT Co-ordinator or clinic nurse. We can only help if you make us aware of the problem.
The frequency of appointments depends on the type of transplant you have received. You may also need to have further platelet and blood transfusions for a short period after discharge from the ward.
NB Any patient on Cyclosporin A must have their blood sample taken before 10.45 to enable analysis of the sample in the laboratory. Therefore please attend for your appointment before 10.30 am.
To ensure accurate analysis of levels you MUST NOT take your Cyclosporin on the morning of your clinic appointment. the tablets with you and take your dose after the blood sample has been taken.
When discharged home you are responsible for caring for yourself. It is important that you are aware of the potential complications you may encounter. Infections remain a matter of concern until your immune system is completely recovered. Risk of bleeding may also be of concern until your bone marrow has recovered. The risk of potential complications lessens in time. It is important that you report any abnormal symptoms to a member of the transplant team.
Transplant recipients remain at risk of infection for six months to one year after the transplant. This differs according to the type of transplant.
It is important that you are aware of the symptoms of infection. Prior to being discharged home you will be taught how to take your temperature. Whilst your blood counts remain abnormal you should take your temperature, orally, morning and night. If you have any reason to suspect an infection i.e. sore throat, shivers, cough, discharge from a line site, generally feeling unwell etc then take your temperature and contact the transplant doctor, the BMT Co-ordinator or Ward C10, immediately whether your temperature is raised or not.
Avoid contact with people who have colds and flu. You should avoid contact with anyone who has chicken pox, measles or shingles or if they have received MMR/Polio vaccinations for two weeks following their diagnosis/vaccination.
Make sure your pets are kept clean, free of fleas and that you do not have close facial contact with them. You should not keep birds as pets.
Depending on the chemo/radiotherapy you have received you may also be given specific antibiotics to prevent certain infections which may occur after transplantation. All patients who are given a donor transplant will be commenced on Penicillin. This must continue for life and will protect against certain chest infections.
If you suspect that you may have shingles, (i.e. any pain, tingling, burning sensation or rash on one side of the body) you must contact the transplant team immediately. Do not visit the ward or the outpatient department as you may then infect other vulnerable patients.
You may continue to require platelet transfusions after discharge from hospital. You should contact the Ward immediately if you develop any of the following:
abnormal bruising or bleeding, blood in your urine or stools;
small blood spots (petechiae) on your body;
a headache which does not respond
a persistent nose bleed.
You may experience symptoms of anaemia e.g. feeling tired, listless, breathless, or dizziness on standing. It is not uncommon for some patients to need blood transfusions after discharge from hospital.
NB If you are given any blood products after the transplant these must be CMV negative and Irradiated.
You should continue to adhere to the food restrictions until the
doctors discontinue your ciprofloxacin antibiotics. If you have any doubts about resuming
a normal diet the nursing and medical staff will be able to discuss this. You should
continue to take sensible precautions
be meticulous about food hygiene;
comply with food storage instructions and expiry date;
avoid take-aways, soft cheeses, pate, and unpasteurised products;
use fresh fruit, vegetables, bread and milk.
If you experience any eating difficulties such as lack of appetite, taste alterations, or a sore mouth please do not hesitate to discuss this with the BMT Co-ordinator or clinic nurse who will be able to refer you to the dietician.
Continue with a daily bath or shower, using a mild soap. Your skin may become drier and more sensitive than normal due to the treatment you have received. If this occurs you may need to use a non irritating oil or lotion e.g. baby oil. If your skin develops and itch, rash or becomes red contact the transplant unit immediately.
For a few months following treatment, your mouth may be drier and more sensitive than normal. Your saliva production may be reduced. These problems will resolve themselves in time. If you remain neutropenic or you are prescribed Cyclosporin A you should continue a regular programme of mouth care as performed in hospital, at least three times a day.
When your hair re-grows, it will initially be very fine and fragile. Use a gentle shampoo (not medicated or dandruff shampoo).
If your line remains place after discharge from hospital the nurses on the ward will instruct you in how to care for it and give you appropriate information.
Following bone marrow transplantation we advise you to maintain a high standard of dental care in order to prevent dental decay and gum disease.
Most routine dental care required after your transplant can be carried out by your own dentist. Your dentist and dental hygienist will advise you on a programme of dental hygiene including advice on brushing, flossing and use of mouthwashes as well as suggesting any care you might be advised to take with your diet.
We recommend that you avoid fizzy drinks, except those made with carbonated water, maintain a low sugar diet and reduce acid in the diet such as fruit juices.
You will normally have your teeth checked about every six months but it is best to discuss with your dentist how often you should attend for screening.
When you have your routine check up please ask Dr Marcus, or a member of his team, if you require antibiotic cover for any procedures which may need to be carried out. We will liaise with your dentist on any special precaution that have to be taken.
If there are any difficulties with your dental care the oral surgeons at the hospital will be happy to advise you and can assess you if required.
You will feel tired and lethargic when you are discharged from the ward. Remember this is normal and to be expected. It takes time to build up endurance. Try to do a little exercise each day walking is a good form of exercise. You may find that you need to sleep during the day.Returning to work Do not contemplate going back to work until you feel fully able to cope. You should discuss your return to work with a doctor.
Although chemotherapy and radiotherapy affects your ability to have children it does not affect your ability to enjoy sexual activity. You should be able to engage in normal sexual activity after your transplant. Resuming sexual contact depends on how you feel. Cleanliness and lubrication are important during intercourse to avoid irritation and possible bleeding or infection.
A womans vagina may be drier than usual, initially, so a lubricating jelly for example KY jelly should be used to avoid possible problems. Females will experience a premature menopause. For this reason we recommend use of hormone replacement therapy after transplant. This will be discussed with you at your clinic appointment.
Males may notice a temporary decrease in sexual desire. This may be related to a temporary decrease in hormonal level and will resolve itself as hormonal levels return to normal.
If you are concerned about your libido please discuss this at your clinic appointment. We can take blood samples to assess your hormone levels and may be able to resolve the problem quickly with medication. The use of contraceptives should be discussed with the doctor as different treatments have varying effects on fertility.
You should avoid people with viral infections, hence it is wise to avoid, enclosed, crowded, smoky places i.e. pubs, busy shops, cinemas at peak of viewing etc. until your blood counts have fully recovered. If you have been in contact with someone who then develops chickenpox, shingles or measles, please contact the transplant team immediately.
You should not plan a holiday immediately after discharge from hospital. If you wish to go abroad, you should consult with the medical staff. They will be able to give you advice on immunisation. You must not have any live vaccines. If necessary they will be able to arrange medical supervision in the area you wish to visit.
When you do go abroad you should ensure that you have comprehensive medical insurance. If you are an EC citizen travelling within the EC you should obtain a charges exemption certificate before you leave the UK.
You should not use a public swimming pool for six months following your transplant.
Graft versus host disease
Despite medication to prevent it, there is a chance that you may develop this complication within the first six months of transplantation. It can be successfully treated if reported promptly.
By the end of the first year your immune system will probably have returned to normal, and the bone marrow will be manufacturing blood normally. You should continue to be vigilant and you will continue to have regular check-ups, which may include a bone marrow sample or a CT scan. You may get infections such as shingles and chest infections, and if so you will need prompt treatment. If is very important to keep in close contact with the doctors and discuss any problems and worries.
Potential late complications of transplantation (two 12 months after transplant)
You may be dismayed by the list of potential complications below, please remember most of these are uncommon. We have included a full account of them to ensure that you are fully informed prior to undergoing such a major treatment intervention.
Graft failure and rejection
Occasionally blood counts may fall weeks to months after transplant. If rejection is suspected a bone marrow sample will be taken. Drugs may then be used to stimulate the graft.
In allogeneic transplantation drugs may be used to suppress your immune system further or your own bone marrow or stem cells may be returned to restore bone marrow function. This obviously extends the period of time that you are unable to produce normal blood cells. If this does occur, youll be kept fully informed of the treatment plan.
See previous notes.
Lung tissue changes
As a consequence of some chemotherapy and TBI, the tissues in the lungs may be affected following the transplant. This may result in a higher risk of suffering from certain types of infections, or an inflammation of the lung tissue itself. Prior to discharge you should be given instructions to report any abnormal symptoms i.e. breathlessness or persistent cough to the transplant centre. If necessary we may organise repeat lung function tests and commence steroid therapy.
As stated previously it is very unlikely that you will be able to have children following transplantation. For some, this may not be an issue before transplantation but may become one in the years following recovery. Fertility treatments are rapidly evolving. We hope that you will feel able to discuss this aspect of your life with a member of the transplant team so that we can offer guidance, support and referral as appropriate.
The vast majority of women will experience a premature menopause as a result of conditioning therapy. As a consequence we recommend that you commence hormone replacement therapy, after transplant, to counteract those symptoms associated with the menopause.
Many people experience difficulty resuming a sexual relationship following transplantation. This may be due to a variety of reasons for example following a long period of hospitalisation, fears for their health, feelings of anxiety about their appearance, hormonal imbalance, loss of libido etc. On resuming sexual contact you may initially feel more tired than normal but this should gradually improve. If you are experiencing specific problems please try and discuss this with a member of the transplant team with whom you feel comfortable. Someone should be able to help, or refer you to a person who can. It may be embarrassing to discuss private matters but the problems do not always resolve themselves, the solution may be something as simple as altering hormone therapy. This applies to both men and women.
Acute Graft versus Host Disease has already been discussed. Chronic GvHD can develop three to six months after the transplant. It can cause symptoms such as dry eyes, dry or sore mouth, thickened skin and gut lining, and liver and lung problems. It can usually be treated without admission to hospital and will often resolve completely in time. Occasionally a minority of patients may experience considerable problems with long term chronic graft versus host disease.
This information booklet was written as previous transplant patients had expressed a wish that they had been given some written information prior to undergoing transplantation. We feel that you have the right to be fully informed prior to contemplating any major treatment intervention and therefore the information is very frank. It is a general overview only, the risks and side-effects discussed will not apply to all patients. We hope that the booklet is helpful and informative and enables you to prepare for the transplant procedure. It may not have answered all your questions. Please make use of the space provided to write these down and discuss either at your next out-patient appointment or by contacting the BMT Co-ordinator.
When to call the transplant team?
Please contact a member of the transplant team immediately if you have any of the following symptoms :
fever of 38ºC;
skin irritation or rash;
any evidence of shingles (i.e. any pain, tingling, burning sensation or rash on one side of the body);
diarrhoea or abdominal pain;
any cough or breathlessness after walking short distances;
any cold sores;
persistent nose bleed;
headache which is not responsive to Paracetamol;
blood in urine or stools;
symptoms of anaemia.
Please do not be too anxious if you have to be re-admitted to hospital, for some patients this is expected.
If you are admitted to another hospital for any reason, please ask the doctors to inform a member of the transplant team.
Any questions ?
Please use this space to make a note of any questions you might like to ask.
Leukaemia Research Fund
43 Great Ormond Street
London WC1N 3JJ
Tel: 0171 405 0101
Leukaemia Research Fund in Scotland
37 Whittinghame Drive
Glasgow G12 OYH
Tel: 0141339 1101
Devotes all its resources to research into the causes, treatment and cure of leukaemia, lymphomas and myeloma. Provides a patient information service and booklets on the diseases and their treatment.
BACUP (British Association of Cancer
3 Bath Place
Tel: 0800 181199 (outside London)
0171 613 2121 (from 0171 &0181 districts)
Offers advice, information about the illness, its treatment or the practical and emotional problems of living with disease. The service is free and confidential and is open 10 am to 7 pm, Monday to Thursday, and 10 am to 5:30 pm on Friday.
Leukaemia Care Society
14 Kingfisher Court
Devon EX4 8JN
Tel: 0392 464848 Fax: 0392 460331
Groups throughout the United Kingdom. Offers support, befriending and companionship to patients and their families. Limited financial assistance is available and a small number of holiday caravans.
Hodgkins Disease Association
PO Box 275
Bucks HP17 8JJ
Tel: 01844 291500 (9am10pm seven
days per week)
Gives emotional support, advice and information on all aspects of Hodgkins disease and non-Hodgkins lymphoma.
Anthony Nolan Bone Marrow Trust
PO Box 1767
The Royal Free Hospital
London NW3 4YR
Tel: 0171 284 1234 (Donor Dept)
Runs Europes largest register of fully tissue-typed volunteer donors. Anyone wishing to be a bone marrow donor should contact the Donor Department.
17 Britannia Street
London WC1X 9JN
Tel: 0171 833 2451
9 Castle Terrace
Edinburgh EH1 2DP
Tel: 0131 228 5557
Offers support and information on all aspects of cancer in response to telephone and letter enquiries. Acts as a resource to over 370 cancer support and self-help groups throughout the UK and publishes a range of publications on issues about cancer.
Cancer Care Society
21 Zetland Road
Bristol BS6 7AH
Tel: 01272 427419/01272 232302
Offers emotional support and practical help where possible through support groups around the country. Telephone and one-to-one counselling, telephone link service, holiday accommodation and information on other charities and cancer-related organisations.
Cancer Relief Macmillan Fund
1519 Britten Street
London SW3 3TZ
Tel: 0171 351 7811
Provides home care nurses through the Macmillan Service and financial grants for people with cancer and their families.
Marie Curie Cancer Care
28 Belgrave Square
London SW1X 8QG
Tel: 0171 235 3325
Runs eleven centres (hospices) throughout the UK, and a nation-wide Marie Curie nursing service, providing hands-on care for patients in their own homes throughout the day or night, free of charge.
Further general information Your doctors and specialist nurses are in an ideal position to give you relevant information on your disease and treatment as they know your individual circumstances. Cancerbackup has a help line (0808 800 1234) and a prize winning video available in English, Italian, Urdu, Bengali, Gujarati & Hindi explaining Radiotherapy & Chemotherapy. Cancernet.co.uk has over 500 pages describing cancer, its management, practical tips and tool which patients, their carers and their doctors have found helpful during the cancer journey.