A practical guide to tests and treatments

Transcription

1 A practical guide to tests and treatments

2 Contents 1 Contents About this booklet 2 What is a donor stem cell transplant? 5 Stage 1: Planning and preparation 17 Stage 2: The conditioning treatment 31 Stage 3: Collecting stem cells from a donor 39 Stage 4: Transplant 45 Stage 5: Engraftment 49 Stage 6: Recovery after a transplant 73 Further information 97

3 2 Understanding donor stem cell (allogeneic) transplants About this booklet This booklet is about having a transplant using stem cells (early blood cells) from another person (a donor). This is called a donor stem cell transplant. The medical term for this is an allogeneic transplant. It s also sometimes called an allograft or a bone marrow transplant. We use the term donor stem cell transplant in this booklet. A donor stem cell transplant can be used to treat cancers such as lymphoma, myeloma and leukaemia. It is also sometimes used to treat some other diseases of the bone marrow or immune system. Donor stem cell transplants can be carried out in adults and children. This booklet is mainly for adults who are having a donor stem cell transplant. If you have a child who is going to have a donor stem cell transplant, we hope the booklet helps you understand the different stages of treatment. You may find that the approach used by specialist children s units is different from that used in adult units. Many organisations can support and advise the parents of children who have cancer; some of them are listed on pages The Children s Cancer and Leukaemia Group (CCLG) also has a booklet called A parent s guide to children s cancers. In this booklet, we ve included some comments from people who ve had a donor stem cell transplant. Some are members of our online community (macmillan.org.uk/community) and others have chosen to share their story with us via macmillan.org.uk/cancervoices

4 About this booklet 3 We can t advise you about the best treatment for you. This information can only come from your doctor, who knows your full medical history. If you d like to discuss this information, call the Macmillan Support Line free on , Monday Friday, 9am 8pm. If you re hard of hearing, you can use textphone , or Text Relay. For non-english speakers, interpreters are available. Alternatively, visit macmillan.org.uk Turn to pages for some useful addresses and websites. You can write down any notes or questions for your doctor or nurse on page 112. If you have found this booklet helpful, you could pass it on to your family and friends. They may also want information to help them support you. Some transplants use a person s own stem cells. This is called an autologous stem cell transplant, or high-dose treatment with stem cell support. We have a separate booklet about this type of transplant.

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6 What is a donor stem cell transplant? The bone marrow and stem cells 6 What is involved? 8 Making your decision 10 Research trials 14

7 6 Understanding donor stem cell (allogeneic) transplants The bone marrow and stem cells To understand stem cell transplants, it helps to know a bit about the bone marrow and stem cells. The full name for stem cells in the blood and bone marrow is haematopoietic stem cells, but in this booklet we shorten it to stem cells. Bone marrow is part of the immune system, which protects us from infection and disease. The bone marrow is in the spongy material found inside our bones. The main bones where it is found are the hip bones, breast bone, arm and leg bones and the ribs. Stem cells are made inside the bone marrow. Stem cells are blood cells at the earliest stage of development. All blood cells develop from stem cells. Millions of blood cells are made each day. They stay inside the bone marrow while they are developing. When they are fully grown, the blood cells leave the marrow and go into the bloodstream. The number of blood cells in your blood is measured by a blood test called a full blood count (FBC).

8 What is a donor stem cell transplant? 7 Bone Bone marrow Red blood cell Stem cell Platelets White blood cell The bone marrow, a stem cell and blood cells The three main types of blood cell are: red blood cells, which carry oxygen around the body platelets, which help blood to clot and prevent bleeding white blood cells, which fight and prevent infection. There are several types of white blood cell. The two most important types are neutrophils and lymphocytes.

9 8 Understanding donor stem cell (allogeneic) transplants What is involved? The aim of a donor stem cell transplant is to replace your bone marrow and immune system with that of a donor s. This will give you a new, healthy bone marrow, and an immune system that can fight any remaining cancer cells. A donor stem cell transplant is a very specialised and complicated treatment. But it can be broken down into stages. In this booklet, there is a chapter for each stage. You can use the diagram opposite to quickly find the chapter you need. The chapters also match the colours in the diagram. If a donor stem cell transplant is advised for you, your hospital team will explain the risks and benefits. If you agree to have a transplant, they can look for a donor and start to plan and prepare (Stage 1). You will have high doses of chemotherapy, and possibly radiotherapy, before the transplant (Stage 2). This is called conditioning treatment. At the same time, your donor s stem cells will be collected (Stage 3). When you re ready to have your transplant (Stage 4), you ll be given the cells through a drip (infusion). The cells will find their way to your bone marrow. They will then settle into place (engraft) and start to make new blood cells (Stage 5). You ll need lots of medical and nursing support while the stem cells engraft. When your blood cells have recovered and you re well enough, you can go home (Stage 6). The hospital staff will explain how you can look after yourself and you ll have regular follow-up appointments.

10 What is a donor stem cell transplant? 9 The stages of a donor stem cell transplant Stage 1 Planning and preparation (See pages 17 29) Stage 2 Conditioning treatment (See pages 31 37) Stage 3 Collecting donor stem cells (See pages 39 43) Stage 4 Transplant (See pages 45 47) Stage 5 Engraftment (See pages 49 71) Stage 6 Recovery after a transplant (See pages 73 94)

11 10 Understanding donor stem cell (allogeneic) transplants Making your decision You will need to think about the benefits and risks of this treatment very carefully before deciding to go ahead with it. A donor stem cell transplant may increase the chance of curing your cancer or leukaemia, or of getting you into remission, than any other treatment. But, you will need to weigh this against the risks. I made the decision to go ahead with the transplant, even though I feel completely well and normal right now. It s very hard to voluntarily undertake a procedure that you know is going to make you feel unwell AND put your health at risk. But I felt that the alternative, which is constantly living in fear of it returning, wasn t an option I could live with. Jackie There have been many improvements in looking after people after a transplant but some people still have serious side effects or may die. Your specialist will talk to you about this. While this information can be upsetting to hear, your specialist needs to make sure that you re fully aware of all the risks. You ll need some time to think about your decision, and you may want to talk things over with your family and friends. Most units have a nurse specialist, transplant coordinator, social worker or counsellor who you can talk to. It s a good idea to have someone with you when talking to the hospital team. They can support you and help you with the information you ve been given. You don t need to rush into making a decision about having a transplant.

12 What is a donor stem cell transplant? 11 If you have questions, ask your hospital team. It s important to have all the information you need before making your decision. You can also choose not to have the treatment. The staff can explain what may happen if you don t have it. It s essential to tell a doctor or the nurse in charge, so they can record your decision in your medical notes. You don t have to give a reason for not wanting treatment, but it can help to let the staff know your concerns so they can give you the best advice. Our booklet Making treatment decisions has information that might help you decide. Risks involved with a donor stem cell transplant A donor stem cell transplant is a very specialised treatment. It can have many side effects and possible complications. Your doctor will consider your general health before advising you to have a transplant. There are likely to be times when you feel very unwell. It can take many months to fully recover, and some people may not get back to the same level of health they had before their transplant. The main risks include: serious infections and bleeding when your blood counts are very low (see pages 52 53) graft-versus-host disease (GvHD) if the donor s cells attack some of your body s tissues and organs (see pages 62 66) the donor stem cells may not produce new blood cells (graft failure see page 67). Your doctor can tell you more about what these side effects may mean for you.

13 12 Understanding donor stem cell (allogeneic) transplants Questions you might like to ask your doctor What are the benefits of a donor stem cell transplant for me? What are the risks? What are the possible long-term side effects? How will it affect the way I live? Will I still be able to have children after the treatment? How long will it be before I get back to my daily routine? What happens if the cancer comes back after my transplant? What may happen if I decide not to have the transplant? What other treatments can I have? Do I need the transplant now or could I have it later if my disease comes back? I didn t have to decide whether or not to have a transplant as my consultant pretty much told me that without a transplant, the cancer will come back and spread. It was my only chance of a complete remission and a cure. Kat

14 What is a donor stem cell transplant? 13 Getting a second opinion Your multidisciplinary team (MDT) uses national treatment guidelines to decide the most suitable treatment for you. Even so, you may want another medical opinion. You might decide to do this if you re concerned about the treatment that has been recommended for you. If you want a second opinion, you can ask your specialist to refer you for one. You can have a second opinion through the NHS so you don t have to pay, or you can choose to have one privately. You ll need to go to a different hospital for a second opinion. You may have to travel some distance as only specialist units carry out transplants. If you do go for a second opinion, it may be a good idea to take a relative or friend with you and have a list of questions ready. This can help make sure your concerns are covered during the discussion. Consent If you decide to have the transplant, you will need to give permission (consent). Your doctor will ask you to sign a form saying that you give consent for the hospital staff to give you the treatment. No medical treatment can be given without your consent. You will also have to give consent for your information to be shared between members of the healthcare teams.

15 14 Understanding donor stem cell (allogeneic) transplants Research trials Research trials or studies can be used to get information about new and better ways of carrying out transplants. Areas of research in transplants include looking at: the best forms of conditioning treatment ways of preventing GvHD ways to speed up bone marrow recovery time. Trials and studies are the only reliable way to find out whether a different type of treatment is better than what is already available. Taking part Many transplant studies involve hospitals across the UK and other countries. You may be asked if you would like to take part in one. You ll be carefully monitored during and after the study. If you decide not to take part, your decision will be respected and you don t have to give a reason. There will be no change in the way you re treated by the hospital staff, and you ll be offered the standard treatment for your situation. We have a booklet called Understanding cancer research trials (clinical trials), which describes research trials in more detail.

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18 Stage 1: Planning and preparation Finding a donor 18 Getting prepared 22

19 18 Understanding donor stem cell (allogeneic) transplants Finding a donor The first step in finding a donor is taking a blood test from you to identify your tissue type. Your tissue type is the combination of proteins on the surface of your cells called human leukocyte antigen (HLA) markers. Your immune system uses your HLA markers to recognise cells in the body as your own. Blood tests usually identify 8 10 markers. Once your tissue type is known, other people can have their blood tested to see whether their tissue type is the same as yours. Having a close match to your tissue type increases the chances of the transplant being successful. The closer the match, the less risk of the donor s cells attacking your cells (see pages 62 66), or of graft failure (see page 67). You don t have to be the same blood group as your donor. After the transplant, your blood will change to their blood group. Related donor Brothers and sisters (your siblings) are most likely to be a match for you. They will be contacted to ask if they are willing to be tested. This will be done by a different medical team from the one looking after you. Your siblings can be tested even if they live abroad. Their blood sample can be taken by their doctor or local hospital. Each sibling has a 1 in 4 (25%) chance of having the same tissue type as you. If one of your siblings is completely matched to you, they are known as an HLA identical donor. But the match is unlikely to be exactly the same unless you are identical twins.

20 Stage 1: Planning and preparation 19 For some markers, doctors may accept small differences to improve the chances of finding a donor. This is known as a mismatched transplant. Parents, half-brothers and half-sisters will not usually be a good match. Volunteer unrelated donor If you don t have a match among your relatives, your doctors can look for a volunteer unrelated donor (VUD). There are donor registries in the UK which have lists of possible volunteer unrelated donors (see pages ). There are a large number of registries in other countries that your doctor can also search if there s no suitable UK donor for you. But this can take time and a suitable match is not always found. Stem cells from cord blood Another source of stem cells is blood from an umbilical cord. This is the cord that connects a baby to its mother during pregnancy. Cord blood can be donated after birth and frozen and stored in a cord blood bank, so it s available for people needing transplants. There is no risk to the mother or baby. All cord blood is tested to make sure it is safe to use. It may be possible to use cord blood for people who don t have a suitable donor. With cord blood, you don t need to have as close a match as with an adult donor. And because it is already stored it can be accessed quickly. Your weight is important when deciding whether a cord blood transplant is suitable. People who are heavier need more stem cells for a successful transplant, and it s not always possible to get enough stem cells from cord blood.

21 20 Understanding donor stem cell (allogeneic) transplants Sometimes doctors can use cord blood from two different cords in one transplant if they are both a close match. This is called a double cord blood transplant. Likelihood of finding a match About 9 out of 10 (90%) of white people from northern Europe find a match from a related or unrelated donor, or from cord blood. People from black, Asian and minority ethnic groups, without a related donor, often have difficulty finding a good match from volunteer registries because most people registered are white. Tissue types rarely match across the different ethnic groups. Black, Asian and minority ethnic groups have about a 4 in 10 (40%) chance of finding a suitable match from a registry. This figure is lower if you re mixed race. Organisations and charities are trying to recruit more donors from all ethnic groups. Cord blood banks have increased the chances of black, Asian and minority ethnic groups finding a suitable donor. Matches can now be found for most people.

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23 22 Understanding donor stem cell (allogeneic) transplants Getting prepared Having a donor stem cell transplant is very physically demanding. It s important to make sure that you re fit enough to have the treatment. The doctors will assess any medical conditions you have that could cause complications after your transplant. They will ask you some questions about your health and lifestyle before treatment begins. Smoking If you smoke, you will be advised to stop. Smoking increases your risk of complications and long-term side effects. Smoking can be a difficult habit to break, especially when you re stressed. But there are organisations and groups that can help you. Your GP can give advice and prescribe nicotine replacement therapies, such as nicotine patches, gums and inhalers. You might also find it helpful to read our booklet, Giving up smoking. Dentist Your doctor or nurse will advise you to visit a dentist for a check-up and to have any necessary treatment. If your teeth or dentures are in good condition, this reduces the risk of possible problems with your mouth during treatment (see page 55). Fertility In most cases, conditioning treatment causes women s periods to stop and affects sperm production in men. The effects on your fertility will depend on the intensity of the treatment you have. Your specialist will be able to advise you on how the treatment is likely to affect your fertility. Your doctors may have talked to you about fertility in the past, before other treatments for your cancer.

24 Stage 1: Planning and preparation 23 It s important to talk to your specialist before treatment starts. If you are still fertile, there may be ways of preserving your fertility so that you may be able to have children in the future. Fertility is a very important part of many people s lives, and not being able to have children can seem especially hard when you already have to cope with cancer. Some people may find it helpful to talk through their feelings with a trained counsellor. If you need more specialised help, your doctor can arrange this for you. Being told it would be unlikely that I d be able to have children after treatment was devastating. I m still dealing with this reality now and it s very hard. Melissa Men You can usually store sperm before having treatment. Sperm can be stored by males who have reached puberty. It can be used later, along with fertility treatment, when you re ready to have a family. Women It may be possible to store fertilised eggs (embryos) that can be used in the future when you re ready to try to get pregnant. If you don t have a partner, it may be possible to store unfertilised eggs. Sometimes, small pieces of tissue containing eggs can be taken from an ovary and frozen and stored. After treatment, the tissue can be put back into the body to allow eggs to develop. This is still very experimental but might be considered for girls who haven t reached puberty. We have booklets about cancer treatment and fertility, including one for young people.

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26 Stage 1: Planning and preparation 25 Central line While you re in hospital, you will have regular medicine into your veins (intravenously) and will have several blood tests. To make this easier, a plastic tube (central line) can be put into a vein in your chest. Your central line will be put in before your transplant. This will be done by a specially trained nurse or a doctor in the hospital. The man in the photograph opposite has a central line. Different types of central line are available including Hickman lines and Groshong lines. A central line can be used to: collect blood samples give the stem cells give drugs, fluids, blood and platelets. A central line is usually put in under a local anaesthetic. The doctor or nurse makes a small cut (incision) in the skin over your chest. They thread the line under your skin and into a large vein in your chest. It may feel sore or uncomfortable for a couple of days after the line has been put in. Regular painkillers will help. The central line has a small cuff that can be felt under the skin just above where the line goes in. The tissue under the skin grows around this cuff and holds the line safely in place. Until this happens, you will have a stitch to hold the line in place. This stitch is usually taken out after three weeks. When the line is in place, you will see a thin flexible tube coming out from your chest. This tube may divide into two or three tubes, called lumens. This allows different treatments to be given at the same time. Each lumen will have a cap on the end that syringes or drips can be connected to.

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28 Stage 1: Planning and preparation 27 PICC line If you can t have a central line for any reason, your doctors may arrange for you to have a PICC (peripherally inserted central catheter) line. This is a long, thin, flexible tube which is put into one of the large veins of your arm, near the bend of the elbow. It is then threaded into the vein until the tip sits in a large vein just above your heart. The picture opposite shows a man with a PICC line. Our website has two animations that explain PICC lines and central lines. Visit macmillan.org.uk/ havingapiccline and macmillan.org.uk/havingacentralline Tests You ll have a number of tests before treatment starts. Your doctor or specialist nurse will explain what they are and why they re needed. They may include: blood tests to check your general health and whether you have any infections or viruses (including hepatitis and HIV) a blood test to check if you are cytomegalovirus (CMV) positive or negative (see page 57) a chest x-ray to check your lungs and heart breathing tests to check how well your lungs work kidney tests to see how well your kidneys are working heart tests such as an ECG (electrocardiogram) or ECHO (echocardiogram) to check that your heart is healthy

29 28 Understanding donor stem cell (allogeneic) transplants a CT (computerised tomography) scan or bone scan to check for any problems in your bones a bone marrow biopsy to check that you are in remission (no active cancer cells) swabs and samples to test for infection a pregnancy test if you are a woman of childbearing age. Some of the tests you have depend on the type of cancer or condition you have. Our booklet about your specific type of cancer or leukaemia will have more information on some of the tests mentioned here. Visiting the unit You ll usually be able visit the unit or ward before your transplant. You can talk to the doctors and nurses who will be looking after you. They will tell you what to expect and give you advice on how to prepare. It s a good idea to take a relative or friend with you. Your unit may also have a counsellor who can help you cope with any worries you have before your transplant. They can also support you during your stay in hospital. Some people find it helps to discuss things with someone who has already had a transplant. Your specialist or the support organisations listed on pages might be able to put you in contact with someone suitable. You can also use Macmillan s online community to meet people who are going through similar experiences to you visit macmillan.org.uk/community

30 Stage 1: Planning and preparation 29 Teenagers and young adults Some hospitals have teenage and young adult cancer units (sometimes called TYA units). These are specially designed for younger people. There may be computer games, DVDs and music to help you feel more at home. You may have access to a computer so that you can keep up with your studies if you feel well enough. Sometimes education specialists will come in to help support you while you re having treatment. Visit macmillan.org.uk/youngpeople for information for teenagers and young people. There s also an online group for people aged where you can talk to others who understand visit macmillan.org.uk/community Getting organised Once you understand what the treatment involves, you can take time to think things over and start to make practical arrangements. You will know in advance the date you go into hospital to start your treatment. This will help you to plan. As you are going to be in hospital for a few weeks, you might have a few things to do, which may include: letting your work or college know organising child care organising pet care arranging for bills to be paid making sure your house is secure if it s going to be empty. We have more information about these and other practical issues on our website visit macmillan.org.uk

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32 Stage 2: The conditioning treatment Going into hospital 32 The conditioning treatment 35

33 32 Understanding donor stem cell (allogeneic) transplants Going into hospital About a week before your transplant date, you will be admitted to hospital to start your conditioning treatment. Arrangements vary between transplant units, but you ll usually have your own room. Because you may have to stay in your room for a long period of time, you might want to bring special items from home to make you feel more comfortable. What to take with you The nurses will give you ideas of what you can bring with you to help pass the time and make you more comfortable. This can vary between different units. It s a good idea to take a laptop, some books, magazines, pens and paper. You can also take a radio, MP3 player, audiobooks or relaxation CDs. You may be able to take films, computer games, games or a hobby, such as knitting. Many hospitals supply TVs and DVD players. Some also have internet access. I m planning on taking a guitar and headphone amp with me, along with books, music and my computer. Apparently the rooms have a Wii and TV. Ian

34 Stage 2: The conditioning treatment 33 You might like to have personal things with you such as photos, pictures and possibly a special blanket or pillow that has been cleaned. You will also need to take comfortable, loose fitting clothes with you. Soft, cotton materials are best, and tops with buttons will make it easier when you re being examined. Ask the nurses for advice on the kind of toiletries you should bring with you. Questions you might like to ask: What can I bring to make my stay more comfortable? Is there a TV I can watch? What about a DVD player? Can I bring my mobile phone? Is there a telephone I can use, and will I need coins or a phone card? Can I bring in a laptop, and will I have access to the internet? How many visitors can I have and how long can they stay? Is there anyone who shouldn t visit, such as children? What precautions will visitors have to take when they come to see me? Do I need to follow a special diet? Are there any foods I should avoid? Can I bring in food or snacks? Will there be a fridge I can use?

35 34 Understanding donor stem cell (allogeneic) transplants Visitors Visitors, especially close family and friends, are important. They give you support and help you keep in touch with life outside hospital. Some units have rooms for family members to stay overnight. This is useful if your relatives have a distance to travel to the hospital. Most hospitals are flexible about visiting, but different hospitals have different rules. You may be restricted to a certain number of visitors each day to help protect you from infection (see pages 52 53). The nurses will explain more about this to you.

36 Stage 2: The conditioning treatment 35 The conditioning treatment Before a donor stem cell transplant, you ll be given treatment to get you ready for your donor s cells. This is called conditioning treatment. During this time, the doctors may talk about days as numbers. The day of your transplant (stem cell infusion) is Day 0. The days before the transplant are counted as Day -8, Day -7, and so on, until Day 0 when you have the transplant. The days after the transplant are counted as Day +1, Day +2, and so on. Your conditioning treatment will be completed hours before the transplant (Day -2 or Day -1). You will usually have several different chemotherapy drugs for your conditioning treatment. These can be given in different combinations. Some people also have radiotherapy to the whole body, which is known as total body irradiation, or TBI. The conditioning treatment is given: to prepare your immune system to accept the donor stem cells to reduce the risk of your immune system attacking the donor stem cells to remove any remaining cancer cells from your body. Conditioning treatment can take up to a week. The conditioning treatment starts before the donor s stem cells are collected. If your donor is a relative, their cells will be collected on Day -1 (the day before the transplant). If the donor is not related, their cells will be collected on Day -2 (two days before the transplant date). This is to make sure you re ready for the transplant soon after the stem cells are available.

37 36 Understanding donor stem cell (allogeneic) transplants There are different ways of giving conditioning treatment and also different levels of intensity (strength) of treatment. The treatment you have will depend on the type of cancer or leukaemia you have, your general health and any chemotherapy or radiotherapy treatment you ve had in the past. Full-intensity conditioning High-dose chemotherapy, sometimes with total body irradiation, is given to destroy your bone marrow and immune system. You are then given donor stem cells to replace your immune system and to attack any remaining cancer cells in your body. Reduced-intensity conditioning This uses less intense doses of chemotherapy or radiotherapy, which should mean fewer complications. Reduced-intensity conditioning weakens your immune system enough to allow the donor stem cells to grow in your bone marrow. When both your donor s cells and your own cells are in your system, this is called mixed chimerism (see pages 60 61). The donor stem cells will gradually replace your immune system and attack any remaining cancer cells in your body. Chemotherapy Chemotherapy is given through your central or PICC line (see pages 25 27) with plenty of fluids. The treatment is usually given over several days. We explain some of the possible side effects on pages You ll be given drugs to help control them. Our booklet Understanding chemotherapy explains the treatment and has information on how to cope with side effects. We also have information on individual drugs and drug combinations.

38 Stage 2: The conditioning treatment 37 Radiotherapy Radiotherapy uses high-energy rays to destroy cancer cells. You may be given total body irradiation (TBI) as conditioning treatment before your transplant. TBI may be given twice a day for 6 8 sessions over 3 4 days. If you re having radiotherapy as part of a reduced-intensity regimen, only one or two low doses of TBI may be needed. If you re having radiotherapy, you will go to the radiotherapy department for a planning session a few days before the treatment begins. The doctor will explain what will happen during your radiotherapy, and you can ask any questions you may have. Before each session, the radiographer will position you carefully and will make sure you re comfortable. You ll have to change position a few times during the session. The radiographer will explain this to you. During the treatment, you ll be left alone in the room, but you ll be able to talk to the radiographer, who will be watching you from the next room. Each session lasts about 40 minutes, but the radiotherapy only takes about minutes. You can bring some CDs to listen to during your treatment. Radiotherapy isn t painful, but you do have to keep still while your treatment is being given. Many people find that they don t have many side effects from total body irradiation. This is because the treatment gives a relatively low dose of radiation to all parts of the body. Possible side effects include tiredness, feeling sick (nausea), diarrhoea and a sore mouth. We explain more about these on pages Our booklet Understanding radiotherapy has more general information about radiotherapy.

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40 Stage 3: Collecting stem cells from a donor Before donating stem cells 40 Collecting stem cells from the blood 41 Collecting stem cells from the bone marrow 43

41 40 Understanding donor stem cell (allogeneic) transplants Before donating stem cells Before donating stem cells, donors are given counselling so they know what s involved. Donors will then be asked to sign a consent form. Even after signing a consent form, the donor has the right to change their mind about going ahead with the donation. All information about the donor will be kept confidential. No information can be shared without their permission. These rules apply to related donors and unrelated donors. Donors are looked after by different doctors from the one looking after the person waiting for a transplant. The donor will have tests to make sure that the procedure is safe for them. These can include a chest x-ray, an ECG and a weight check. Blood tests are then taken to check their general health and to check for infections including HIV, hepatitis and cytomegalovirus (CMV) (see page 57). Female donors may be asked to take a pregnancy test before donating. Stem cells can be collected either straight from a donor s blood or from their bone marrow.

42 Stage 3: Collecting stem cells from a donor 41 Collecting stem cells from the blood Mobilising the stem cells The donor has daily injections of a growth factor (G-CSF) for several days before collection. Growth factors stimulate the bone marrow to make stem cells and increase the number of stem cells which move from the marrow into the blood (mobilise). The growth factor is given as a small injection under the skin (subcutaneously). The donor can be taught to inject themselves, or they can go to their GP or hospital to have injections. The donor s blood is checked around five days after the start of the injections. When there are enough stem cells in the blood, they are collected. We can send you more information about the growth factor G-CSF.

43 42 Understanding donor stem cell (allogeneic) transplants Collecting the stem cells The collection takes 3 4 hours, and can usually be done as a day patient. A nurse or doctor puts a short, thin tube (cannula) into a vein in each of the donor s arms. Each cannula is connected by a line of thin tubing to a machine called a cell separator. The donor s blood goes out from one arm through the line into the cell separator. As the blood travels through the cell separator, it is spun to separate out the stem cells, which are collected in a bag. The rest of the blood is returned to the donor through the cannula in their other arm. The collected stem cells are counted to make sure there are enough. If more stem cells are needed, the donor may have to come in for another collection the next day. The stem cells will be collected a day or two before the transplant date. My 22-year-old daughter had a stem cell transplant. Her brother was a match, he was 18 at the time and the process for him as a donor was a piece of cake!. He even played 90 minutes of football the evening of the day he donated. Nikki

44 Stage 3: Collecting stem cells from a donor 43 Collecting stem cells from the bone marrow Although it s more common for stem cells to be collected from the donor s blood, sometimes they are collected straight from the bone marrow. This is usually from the pelvis (back of the hip bones). It is done under a general anaesthetic. The donor will usually stay in hospital overnight. The doctor uses a special needle and syringe to collect the marrow. They pass the needle through the skin and into the bone. Bone marrow is taken up through the needle into the syringe, and transferred into a sterile container. The doctor may do this a few times, taking bone marrow from different parts of the pelvis. Usually about one litre of bone marrow is removed from adult donors. This is about 10 15% of the body s total. This still leaves safe amounts of bone marrow for the donor. Usually, their body will replace what has been removed within a few weeks. The donor will have blood tests to check their blood counts have returned to normal. The donor may feel sore for a few days after having some of their bone marrow taken. They can take regular painkillers to help. There may be some bruising around where the bone marrow was taken, which may last for a few weeks.

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46 Stage 4: Transplant Having the stem cells 47

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48 Stage 4: Transplant 47 Having the stem cells A nurse will give you the donated stem cells through your central or PICC line (see page 25 27) one to two days after finishing your conditioning treatment. This is like having a blood transfusion. Fresh donor cells are usually given within 48 hours of collection. If you are having a cord blood donation, it will be brought to the unit on your transplant date, thawed and given to you through your line. Some people have mild side effects while the stem cells are given, such as feeling sick and breathless. You ll be closely monitored during and after having the cells. The stem cells travel through your blood to your bone marrow, where they ll engraft and start to make blood cells. It can be at least 10 days and up to three weeks before some of the new blood cells are released into the blood. You may be given growth factors (see page 41) by injection. This will stimulate your bone marrow to start making new blood cells more quickly. Getting growth factors can reduce how long you re at risk of side effects. We have more information about growth factors.

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50 Stage 5: Engraftment Daily routine 50 Possible side effects 52 Graft-versus-host disease (GvHD) 62 Less common problems 67 Your feelings during treatment 69 If you re a relative or friend 70

51 50 Understanding donor stem cell (allogeneic) transplants Daily routine While you are waiting for the stem cells to engraft, you will usually stay in a single room to protect you from infection. This is especially important when your blood count is at its lowest, for about 2 4 weeks after the transplant. Although you may expect to have a lot of time on your hands, your days may be quite busy. Much of your time will be taken up with daily routines and checks by the doctors and nurses looking after you. This will include having: blood taken from your central/picc line (see pages 25 27) medicines given into your central/picc line by a drip fluids given by a drip your temperature, pulse and blood pressure taken your chest and tummy examined and central/picc line checked fluid balances (measuring the fluid you take in and the fluid you pass out) a daily weight check. You will also be seen regularly by the dietitian, physiotherapist and other members of the team looking after you.

52 Stage 5: Engraftment 51 I didn t have the patience or concentration to do anything much post-transplant. I spent a whole lot of time sleeping on and off between trips to the bathroom and the frequent interruptions from the medical professionals. Ian How you can help yourself Being involved in your care can help you feel more in control. You could: Get up every day, have a shower and change your clothes. Ask if you can do things like keeping a note of how much fluid you re drinking or what you re eating. Try to eat regularly even if you don t have much of an appetite. Do any exercises you ve been shown, and walk around your room. When you re feeling better and your blood counts are up, you might be able to take short walks around the unit. Some units have exercise bikes you can use. Ask for regular updates on your progress and write it down in a notebook or journal. Understanding your illness and treatment makes it easier to cope with. If there s anything you don t understand about your treatment, its side effects and possible outcomes, it s important to ask. It s also important to tell the doctors and nurses if you have new side effects or changes in your mood.

53 52 Understanding donor stem cell (allogeneic) transplants Possible side effects The side effects you have will depend on the type of conditioning treatment you have had (see pages 35 37). If you have had a reduced-intensity transplant, side effects may be less severe. Your hospital team will tell you more about what to expect. You ll have blood samples taken every day, including a full blood count. Your blood cell numbers will be low for some time. Risk of infection The number of white blood cells in your blood (particularly a type called a neutrophil) will be low for some time. This is called neutropenia, or being neutropenic. During this time, you ll be at risk of infection, even from the bacteria that live on your skin and in your digestive system. These bacteria are normally useful to our bodies, but when the immune system isn t working as well as usual, they may cause infections. You will have drugs to prevent and treat infections. Treatment to prevent problems is called prophylaxis. The nurses and doctors will also take your temperature regularly, and check for signs of infection. They ll ask you to tell them if you feel cold and shivery or have a sore throat, a cough, pain when passing urine or any other symptoms of an infection. The hospital staff will try to protect you from possible sources of infection. But most people at some point will develop a high temperature and need antibiotics while their immune system recovers.

54 Stage 5: Engraftment 53 Keeping clean Your room will be cleaned daily and your sheets will be changed. In most units, you ll have a toilet and a shower of your own. It s important to keep your skin clean. The nurses will give you advice about showering and washing your hands. They can help you with personal care if you re feeling very tired. They ll also show you how to look after your mouth (see page 55). Being careful with food During your time in hospital, there will be rules about what you can eat. This is to help you avoid food that contains bacteria. Each hospital will have its own guidelines. Your nurse or dietitian can explain them to you. They may include: Avoid soft cheeses, pâté and unpasteurised foods. Don t eat lightly cooked or uncooked eggs. Fruit and vegetables need to be washed and peeled. Hot meals should be freshly prepared and well cooked (not reheated). Avoid takeaway foods. Visitors The ward nurses will tell your visitors how to protect you from infections. Visitors will have to wash their hands and wear an apron before going into your room. People who feel unwell or have an infection will be asked not to visit.

55 54 Understanding donor stem cell (allogeneic) transplants Anaemia The number of red blood cells in your blood may be low at times. This is known as anaemia and can make you feel tired and short of breath. You may need blood transfusions until your body starts to make enough red blood cells again. For several months after your transplant, any blood (or platelets) you re given will first be treated with radiation (irradiated). This is to prevent problems caused by white blood cells called lymphocytes, which may be in the donated blood. Irradiated blood isn t radioactive and won t harm you or anyone you come into contact with. Some people may continue to need any blood or platelet transfusions to be irradiated for the rest of their lives. Bleeding The number of platelets in your blood will be low after the transplant. You re likely to need platelet transfusions to reduce the risk of bleeding or bruising. Platelets will be irradiated before they are given to you. The doctors and nurses will examine you regularly for bruises or little red spots on the skin (petechiae). Let them know straight away if you have a nosebleed, bleeding gums or notice blood when you go to the toilet. Feeling sick The nurses will give you anti-sickness drugs (anti-emetics) regularly. If you still feel sick, tell your nurse or doctor. They can change the anti-sickness drug to one that works better for you.

56 Stage 5: Engraftment 55 Sore mouth Chemotherapy and radiotherapy can cause painful mouth ulcers. If your mouth is sore, you ll be given painkillers. While your white blood cell count is low, you re at risk of mouth infections including thrush, which is a fungal infection. Keeping your mouth clean is important to prevent infections that can spread to other parts of your body. The nurses will tell you how to look after your mouth and teeth. Gently clean your teeth or dentures morning and night and after meals. Use a soft-bristled or children s toothbrush. Your nurse might ask you to rinse your mouth regularly or use mouthwashes. It s important to follow any advice you are given and to drink plenty of fluids. Eating problems During treatment, it s important that you don t lose too much weight. Try to eat small meals and snacks regularly. If your appetite doesn t improve, tell your nurse or dietitian. They can help you add more calories into your diet. They may give you food supplements to try. If you have a sore mouth, this can make eating difficult. You may be given nutritional drinks until you can eat properly again. Occasionally, people may need to have liquid food through a thin, soft tube that goes down the nose into the stomach (a nasogastric feeding tube). Some people may be fed through their central or PICC line with a special liquid feed called total parenteral nutrition (TPN). Once you start to eat more, the amount of food you re given through the line is gradually reduced.

57 56 Understanding donor stem cell (allogeneic) transplants Diarrhoea This can sometimes be severe. If you get diarrhoea, samples will be taken to check for infection. You ll be given medicines to either treat any infection or help control the diarrhoea. Let the nurses know if it doesn t get better or if your bottom gets sore. Try to drink at least two litres (three and a half pints) of fluids every day. If you can t manage this you may need fluids through a drip. There is more information in our booklet Eating problems and cancer. There s also lots of information online at macmillan.org.uk/eatingwell Bladder irritation Some chemotherapy drugs may irritate your bladder and cause discomfort when you pass urine. You may be given fluids through a drip (infusion) and some drugs to help prevent bladder irritation. Drink plenty of fluids at least two litres (three and a half pints) each day. It s also important to empty your bladder regularly and try to pass urine as soon as you feel the need to go. Tell your doctor or nurse straight away if you feel any discomfort or stinging, or if you notice any blood when you are passing urine. Effects on the lungs Having a transplant can sometimes cause changes to the lungs. This is more likely if you already have lung problems. Always tell your doctor if you notice wheezing, a cough, or feel breathless. You should also tell them if any existing breathing problems get worse.

58 Stage 5: Engraftment 57 Cytomegalovirus (CMV) CMV is a viral infection that many people will have had as a child. It feels like mild flu. The virus never fully leaves the body but is kept under control by the immune system. After a transplant, the virus can start to grow (reactivate) as the immune system is too weak to fight it. CMV infection can be serious and can affect different parts of the body including the lungs, bowel, eyes and occasionally the brain. You ll have a blood test to check for CMV before your transplant. Your donor will also be checked. Where possible, you will be matched with a donor with the same CMV status as you either CMV positive or negative. After your transplant, you ll have regular blood tests to check for the virus. Even if you and your donor are both CMV negative, you ll still be checked in case a new infection starts. If CMV levels begin to rise, finding out early makes the virus easier to control. If the levels quickly start to rise after your transplant or become too high, you will have anti-cmv treatment. This may be tablets or sometimes drugs through a drip.

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60 Stage 5: Engraftment 59 Hair loss This is a common side effect of chemotherapy. You usually lose all the hair on your head. Your eyelashes, eyebrows and other body hair may also thin or fall out. It is almost always temporary and your hair will grow back. Our booklet Coping with hair loss has useful information and tips on using hats, scarves and wigs. There s also a video of someone sharing their experience of hair loss at macmillan.org.uk/hairloss Tiredness You ll probably feel very tired and spend a lot of time sleeping. Sometimes you may feel too tired to concentrate enough to read or even watch television. At times, you may not feel able to have visitors or to see them for too long. Let them know how you re feeling so they don t disturb you if you want to rest. You ll probably get tired easily for some months after your treatment, but this will gradually get better. It s not going to be the same for everybody, but I imagine a lot of people find similar frustrations where the physical restrictions on them mean they can t get around but their heads are active. Michael

61 60 Understanding donor stem cell (allogeneic) transplants Exercise Although you re tired, it s a good idea to try to do some gentle exercise, such as stretching. The physiotherapist can give you some suggestions. These help reduce the chances of getting a blood clot, and keep your muscles working and toned. Some transplant units may have an exercise bike that you can use, when you re feeling better and your blood counts have improved. Some units also have exercise programmes that you can continue with when you go home. There is more information about tiredness and exercise on page 78. Starting to recover Most side effects are worse when your full blood count is at its lowest usually during the first two weeks after transplant. When your blood count goes up, the side effects will start to improve. You ll be at less risk of infection and won t need so many blood and platelet transfusions. Your appetite will improve, and you ll start to feel better. Mixed chimerism Chimerism is a measure of how well your donor s cells have engrafted. You will have regular blood tests to measure the numbers of donor cells and your original cells. Your doctors might talk about this as a percentage (%). The aim is that you will get 100% (total) chimerism. This means your blood and bone marrow will be 100% the same as your donor s. If you develop a side effect called graft-versus-host disease (GvHD) (see pages 62 66), you are more likely to have total chimerism. This is because the donor cells will have destroyed any remaining cells of your own and you will have total engraftment.