Allogeneic stem cell transplants

Transcription

1 Allogeneic stem cell transplants Freephone Helpline The knowledge to challenge lymphatic cancers

2 About our publications: The Lymphoma Association is committed to the provision of high quality information for people with lymphoma, their families and friends. We produce our information in accordance with nationally recognised guidelines. These include the DISCERN tool for information about treatments, the NHS Toolkit for producing patient information, and the Campaign for Plain English guidelines. Our publications are written by experienced medical writers, in close collaboration with medical advisers with expertise in the appropriate field. Textbooks and professional journals are consulted to ensure that information is as up-to-date as possible. References are provided where they have been used. Some publications are written by professionals themselves, acting on guidance provided by the Lymphoma Association. Our publications are reviewed every two years and updated as necessary. Our publications are reviewed by a panel of volunteers with experience of lymphoma. Publications are also reviewed by members of the Lymphoma Association helpline team, who have many years collective experience of supporting those with lymphoma. In some instances, our publications are funded by educational grants from pharmaceutical companies. These sponsors do not have any involvement in the content of a publication. They are not invited to see the content and have no editorial input. The information in this booklet can be made available in large print

3 Acknowledgements This booklet is a revision of the 2008 edition. It was based on articles commissioned from members of our medical advisory panel and other medical and nursing professionals with experience in transplantation. It has been updated in the light of recommendations from our panel of expert medical advisers and with reference to the current leading textbooks in the field and recent journal papers. We are grateful to the following people for reviewing and contributing to this booklet: Ms Kim Roberts, Transplant Team Leader and Allogeneic BMT Coordinator, University College London Hospitals NHS Trust Ms Denise Wareham and Ms Mandy Ellis, Bone Marrow Transplant Coordinators, Oxford Radcliffe Hospitals NHS Trust Dr Adrian Bloor, Consultant Haematologist, Christie Hospital NHS Foundation Trust Dr Paul Revell, Consultant Haematologist, Mid Staffordshire NHS Foundation Trust Dr Kirit Ardeshna, Consultant Haematologist, University College London Hospitals NHS Trust and Mount Vernon Cancer Centre We would like to acknowledge the continued support of our many expert advisers and patient reviewers, whose ongoing contributions help in the development of our publications. 1

4 How to use this booklet This booklet aims to explain what donor stem cell transplants are, and what you might expect of your treatment. This booklet describes transplants using stem cells from a donor. This is also known as an allogeneic stem cell transplant. If you are having a transplant of donor bone marrow then this booklet is for you, too. Although the booklet refers to stem cells, the same applies to donor bone marrow. Some people will have transplants using their own stem cells. These are known as autologous stem cell transplants. This booklet has been divided into four parts. You don t have to read it all at once. You might like to read a bit at a time and come back to it when you want to find out more. Important! Read this bit Freephone Helpline We produce a separate booklet about autologous stem cell transplants. The different sections are as follows: The Introduction discusses what donor stem cell transplants are and how they work Part One discusses what happens before your transplant. This includes information about your transplant coordinator, your donor, the collection of donor cells and the tests that you have before treatment begins. Part Two discusses what happens while you are in hospital. This includes a discussion of your treatment, the transplant of donor cells, and supportive care before going home. Part Three discusses your treatment after you go home. This includes ongoing monitoring and adjustment of medications.

5 You will see things written in different ways throughout the booklet. This is what they mean: The arrow bullet points give you directions to other parts of the booklet with more information on a particular subject. Freephone Helpline The telephone helpline symbol indicates that you can call our helpline for more information on this subject on Words written in boxes like this are to emphasise important things to remember about a particular subject. Words written in a paragraph like this are summaries of the section above. You might want to use these bits of the booklet to get the most important points. 3

6 Contents 6 Flow chart 7 Introduction Donor stem cell transplants 7 What are stem cells? 8 What are donor stem cell transplants? 8 How do transplants work? 12 When are donor stem cell transplants used for lymphoma? 13 Summary 15 1 Part One Before your transplant 15 First steps 19 Your donor 22 Tests and other preparations 31 Summary 33 2 Part Two While you are in hospital 33 Conditioning 35 Stem cell infusion 36 Engraftment 37 Side effects and supportive care 43 Graft-versus-host disease and other complications 48 CMV and PCP 50 Veno-occlusive disease (VOD) 50 Being in isolation 50 Daily routine 55 Summary 4

7 57 3 Part Three After you go home 57 Going home 59 Initial follow-up 63 Longer-term follow-up 67 Getting back to normal 71 Your feelings 72 Summary 74 Further information 77 Selected references 78 Glossary 5

8 Example of donor transplant pathway When What Part Weeks months before transplant Information Arrange donor cells Preparation Tests Prep treatment days before transplant Chemotherapy Conditioning Possibly total body irradiation Day zero Transplant Infusion of donor cells days after transplant Close observation and management of side effects Waiting for engraftment Prevention and management of graftversus-host disease Gradually switch from IV medicines to tablets 1 6 months following transplant Going home and continuation of treatment Continued monitoring and management of infection and GVHD Adjust medication and treat infections Readmission to hospital as needed months onwards Ongoing monitoring Getting back to normal Thinking about life in general

9 Introduction Donor stem cell transplants You may be considering treatment with a donor stem cell transplant because your medical team has suggested that you might be helped by this type of treatment. Perhaps someone close to you is having this treatment. Whatever your situation, you are not alone. Although donor transplants are less common than some other lymphoma treatments, there are still many people having a donor transplant every day in various parts of the UK. In recent years, important developments have taken place to make donor stem cell transplants safer and more effective for people with lymphoma. This section of the booklet will discuss: What stem cells are What donor stem cell transplants are How they work How they are used in lymphoma treatment What are stem cells? Stem cells are the building blocks of all our body cells. They are primitive cells that can transform to become any of the body s many cell types. The stem cells used in lymphoma treatment are haematopoietic stem cells. This means that they are programmed to turn into blood cells bone marrow cells, red blood cells, white blood cells and platelets. They are the source of all your blood cells, replacing those that die off 7

10 naturally or are killed. Haematopoietic stem cells are found in the bone marrow and, in small quantities, in the blood and the spleen. What are donor stem cell transplants? A donor stem cell transplant means having anti-cancer treatment followed by a transfusion of stem cells from a donor. You might also hear this referred to as an allogeneic stem cell transplant. Transplant means that living tissue is taken from one place and moved somewhere else. If it is an allogeneic transplant it means the tissue being transplanted is from someone else. In an allogeneic stem cell transplant the cells are collected from your donor, kept in storage and then given to you after chemotherapy or radiotherapy, or both. You might also hear this treatment referred to as an allograft. This is because the new cells graft onto your bone marrow. A donor stem cell transplant is not just about having treatments and donor cells. A crucial part of the process is the supportive care you have after your donor cells are transfused, including the care you have after you leave hospital. Supportive care means medicines and other treatments to deal with side effects and prevent complications. These include drugs to prevent infection, drugs to prevent and treat graft-versus-host disease and top-up transfusions of blood cells to boost your blood counts. You will find these subjects discussed in greater detail in Parts Two and Three. How do transplants work? Donor stem cell transplants are different to other lymphoma treatments you might have had in the past. Conventional treatments use chemotherapy and radiotherapy to kill the lymphoma cells. To some extent this is also the case with a donor stem cell transplant. 8

11 But there is an added benefit of having blood cells from your donor. The transfused cells themselves are an anti-lymphoma treatment. They give you a new immune system that not only boosts your immunity to things like infection, but also attacks any lymphoma cells left in your body after earlier treatments. New immune system Experts suspect that people who get lymphoma have a faulty immune system. The faulty immune system has allowed the cancerous lymphoma cells to develop instead of killing them off when they first appear. Your donor stem cell transplant will replace your faulty immune system and give you the immune system of your donor. Hopefully this immune system will be better at finding and killing lymphoma cells. Graft-versus-lymphoma effect After transfusion, the donor stem cells move from your blood back to your bone marrow, to start making more bone marrow and blood cells. This includes the white blood cells of the immune system. Donor stem cell transplants should work like this: + Chemotherapy / radiotherapy Replacement of faulty marrow and immune system + Graft-versus-lymphoma effect = Control of underlying disease 9

12 The new immune cells will be different from your own cells. They will have your donor s genetic material. They should treat your lymphoma cells as foreign and mount an attack to kill them. This is known as the graft-versus-lymphoma effect. The graft-versus-lymphoma effect should continue to pick up any leftover lymphoma cells for months after your transplant. So, a donor stem cell transplant replaces potentially faulty marrow with new marrow, and also provides a built-in anti-lymphoma treatment. Balancing act However, having someone else s immune cells can cause complications. The new blood cells can attack other cells of your body, apart from your lymphoma cells. This is called graftversus-host disease (GVHD), where your body is the host. Your own remaining immunity might also reject the new cells trying to graft onto your bone marrow. This is called graft rejection. Graft rejection is uncommon. There are also other complications that happen as a result of prolonged suppression (damping down) of your immune system. These include the risk of getting an infection and the risk of old viral infections flaring up again. A donor stem cell transplant is a balancing act. The supportive treatments you are given will aim to encourage the good effects of your donor cells and reduce the undesired effects. They will aim to: Complications, including GVHD are discussed on pages reduce the risk of graft-versus-host disease prevent graft rejection limit the risks of infection but also maintain the graft-versus-lymphoma effect. 10

13 A donor stem cell transplant means a prolonged process of having regular tests and adjustments to your medications. A lot of this goes on after you go home. This means that you can expect to have ongoing treatment for some time after your discharge from hospital. You will have to travel to and from the transplant centre for most of this. Your care after discharge is discussed in Part Three. Myeloablative or high-dose conditioning Conditioning means the anti-cancer treatment given before your infusion of donor cells. Myeloablative conditioning means anti-cancer treatment given in doses high enough to kill all the cells of your bone marrow. If you have high doses of conditioning your own immune system will not be able to reject the cells from your donor. Your donor cells can then start to make a replacement immune system. Myeloablative conditioning for lymphoma is not common. It is usually only offered to people who are relatively young at the time of their treatment. This is because high-dose treatment is associated with more risks and side effects, and these risks increase with age. Reduced-intensity conditioning Most people who have a donor stem cell transplant for lymphoma will have reduced-intensity conditioning. Reduced-intensity conditioning means that the anti-cancer treatment is given in reduced doses that do not kill all of your own marrow. Doctors have discovered that reduced doses of conditioning can mean you get the same anti-lymphoma effect without some of the risks of high-dose therapy. Because the risks are lowered, this makes donor stem cell transplants suitable for more people. 11

14 You might hear this referred to as a mini-transplant or a reduced-intensity conditioning transplant. The kind of conditioning you have will depend on your individual situation. When are donor stem cell transplants used for lymphoma? Donor stem cell transplants are usually offered to people who have already had more than one course of treatment for their lymphoma. Donor stem cell transplants provide hope of prolonged remission for those who are unable to have other treatments. They are used in different situations: They can be used to treat people who have relapsed following earlier treatments. They can be used for people who have failed to respond to earlier treatment. They can be used for people who have relapsed after an earlier autologous transplant, or for those who are not suitable for high-dose therapy. They may be used in a clinical trial. Donor stem cell transplants are not always successful. It will not be possible to make any guarantees. It will not be possible to say how long a remission will last. You will be asked to consider the risks and benefits of a donor stem cell transplant carefully before making the decision to go ahead. 12

15 Summary Donor stem cell transplants involve anti-cancer treatment followed by a transfusion of stem cells from a donor. The transfusion of stem cells is followed by a prolonged period of supportive care, and medication to prevent and treat complications. Donor stem cell transplants work by replacing a faulty immune system with a new immune system the same as your donor s. Your lymphoma cells are foreign to the donor immune cells. The donor immune cells should hunt out your lymphoma cells and kill them. This is called the graftversus-lymphoma effect. Most people having a donor stem cell transplant for lymphoma will have what is known as reduced-intensity conditioning. This means chemotherapy and radiotherapy in reduced doses that do not kill all of your own marrow. This can have the same anti-lymphoma effect as high doses of chemo and radiotherapy but with fewer complications. Donor stem cell transplants are offered to people who have already had other lymphoma treatments. 13

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17 Part One Before your transplant 1 This section of the booklet will discuss what happens before your transplant: The initial steps and meeting your transplant coordinator Your donor Tests and other preparations First steps So, your consultant has suggested that you might be suitable for a donor stem cell transplant. You now begin the process of preparation finding out about the treatment, making decisions, finding a donor and making a timetable. All of this can take a long time. It might be weeks or months before the transplant itself. The first step will be to identify where your treatment will take place. You and your consultant will discuss this. If you are already being treated at a large cancer centre, you might have your transplant at the same place. Otherwise, you will be referred to a regional centre that provides transplant services for a larger area. Inpatient or outpatient? Most people who have a donor stem cell transplant in the UK will be admitted to hospital for their treatment. This means coming to hospital for a stay of 3 6 weeks. Most people will be in a room of their own for some or all of this time, although you will be allowed visitors. 15

18 Some hospitals will offer part of your treatment as an outpatient. This means that you have your conditioning and perhaps your donor stem cells before you are admitted to hospital. You can come into hospital when you need more care and closer monitoring. Because lots of people will have their transplant at a large centre some distance from home, this accommodation may be a room at a hostel on site or sometimes a nearby hotel. Your transplant coordinator Most hospitals have a member of staff called a transplant coordinator. The transplant coordinator is an experienced nurse or other health professional with particular knowledge of stem cell transplants. Your transplant coordinator is responsible for providing you with information and making sure you understand the treatment. He or she will also organise your donor, your preliminary tests and the transplant itself. Your transplant coordinator will be an important point of contact for you. They might see you during your hospital stay and in the clinic after you go home. The transplant coordinator will make contact with you, and arrange to meet you for an initial discussion. At this meeting you will talk about timescales, further tests, finding a donor and treatment. There will be a lot of information to take in at this meeting. You might want to take someone along with you, to help you remember what is said. Make a note of questions you d like to ask. You will also be given lots of information to take home. This will include information about what the treatment involves, what side effects to expect and what happens in the longer term. You will be given information about the hospital itself, key members of staff, hospital policies on visiting and what to bring with you. You might want to keep all this information together in one file or folder. 16

19 You can always contact your coordinator at any time if you have any questions or concerns. You don t have to wait until you have a meeting. You will be given information about how to get in touch. Informed consent A donor stem cell transplant is a complicated treatment associated with risks and side effects. Although the doctors had said they thought this was the right time to have a transplant it was very much my decision. Nobody could say whether it was the right course to take or not Unfortunately nobody can really answer the question that everybody wants answered and that is will this work for me? You will be made aware of the risks and potential benefits of a donor stem cell transplant. Your team is obliged to make sure you are explicitly informed about the treatment. Sometimes this means listening to things that you might find upsetting or discouraging. Although it is difficult and upsetting to hear about the risks of having a transplant your doctors are not trying to scare you. They will explain that the risks of treatment are balanced against the greater risk of the lymphoma. You should be given some idea of the likelihood of the treatment being successful. It will be impossible to be precise about this or to give you any guarantees. It may not be possible for your team to say whether or not a transplant is the right choice. The decision will be up to you. It may help you to talk through the decision with someone who has been though a similar experience. Your medical team or the Lymphoma Association might be able to assist with this. Don t be afraid to ask questions your team will expect you to. Bear in mind that some questions will be difficult to answer. Ask about other possible treatments. Ask if a transplant will influence any treatment you might need in the future. Freephone Helpline If you would like to talk to someone about having a transplant, please telephone our helpline. 17

20 People say that it helps to have the information in advance even the upsetting information. Knowing the risks can make you better prepared for the potential problems ahead. Your medical team will give you lots of information about what a donor transplant involves before you decide to go ahead. They won t be able to make any guarantees. It will be your decision. Clinical trials The decision to offer a transplant comes before the decision to offer a clinical trial. Some donor stem cell transplants take place as part of a clinical trial. Your transplant coordinator might discuss clinical trials with you. You do not have to take part in a trial if you do not want to. Making a timetable Your donor stem cell transplant will take up a lot of the year ahead. As far as possible, your treatment will be planned to fit in with important events in your life. You and your team will spend some time planning the coming months. You will be given a timetable of when things will happen. This will enable you to make arrangements with your employer or with your college or university. You might also need to arrange extra support for those you care for, in particular elderly relatives. Remember... Freephone Helpline For more information about clinical trials please telephone our helpline. An example timescale for a donor stem cell transplant is in the flow chart on page 6. Carers and next of kin Those closest to you will have a vital role to play over the coming months. Your treatment will have big implications for the day-to-day lives other people for a while. The people who will look after you and support you after your transplant will be involved in the planning of your treatment. You don t have to share information with them if 18

21 you don t want to, but it will help you afterwards if they know what to expect. Sharing information and giving those close to you a chance to ask questions might also help them to feel less worried. Unknown to me, my parents got hold of some really scary literature, and instead of discussing it with my doctor, they just really worried and it was an even harder time for them. It s good for them to understand and discuss things. Other practical preparations are discussed on pages Your donor Your transplant coordinator will begin the process of finding you a donor. Your team will try to find a donor with a tissue type as close as possible to your own. The closer the match, the more successful your transplant is likely to be. You won t be told who your donor is; you will only know where they are from, their age and their gender, Your BMT coordinator will be able to discuss this with you in more detail. You may recall from our discussion earlier that there is some risk of your immune cells rejecting the cells of your donor, or of the donor cells attacking your own tissue. These risks are reduced if your donor has a tissue type as close as possible to yours. Tissue typing Your tissue type is something like a fingerprint. With the exception of identical twins, no two people have the same tissue type. Your tissue type is defined by genetic markers on your white blood cells. These markers are called antigens, and they come in pairs one from your mother and one from your father. The antigens act as a kind of uniform for the cell to let other cells know what it is and what it should be doing. 19

22 Finding a donor will involve looking at one particular group of antigens called human leucocyte antigens (HLAs). A blood test will be used to find a donor with HLAs as close as possible to your own. Your tissue type is different from your blood group. Your blood group refers to your red blood cells. Your blood group is considered when finding a donor although it is less important than the HLA type. Finding a donor Your brothers and sisters (siblings) are the people most likely to have a tissue type similar to yours. This is because they inherit their tissue type from the same parents. There is a 1 in 4 chance that your sibling s tissue type will match your own. If blood tests show that they are not a good match, or if you have no siblings, then your medical team will find a matched unrelated donor (MUD), sometimes called a volunteer unrelated donor (VUD). Around half of all donor stem cell transplants use unrelated donor cells. Unrelated donors are found using a bone marrow register. A bone marrow register lists the tissue types of people who have volunteered to donate bone marrow or stem cells. If a match for you is found, the donor will be contacted and invited to donate bone marrow or stem cells. Unrelated donors can come from anywhere in the world. The process of finding an unrelated donor and then preparing them for the donation procedure will take time. It can take several weeks. Unfortunately it is not possible to find a donor for all patients who need a transplant. Two other potential sources of stem cells are: umbilical cord blood stem cells taken from the umbilical cord after a baby s birth family members other than brothers or sisters (for example parents) know as haploidentical transplants. For information about becoming a stem cell donor, you can contact Anthony Nolan. You will find their details at the end of this booklet. 20

23 Clinical studies are investigating the use of both of these sources of stem cells for transplants. Collecting stem cells from your donor Stem cells can be collected in two ways. Sometimes, whole bone marrow will be taken from your donor s pelvis. This involves a short surgical procedure under general anaesthetic and the donor can usually go home later the same day. It is a safe procedure from which they should recover very quickly. There is likely to be some discomfort in the hip region for a few days afterwards. They will be given full information about the procedure including advice about suitable pain relief. Stem cells can also be collected from your donor s blood. You might hear these stem cells referred to as peripheral blood stem cells because the bloodstream is peripheral to (outside) the bone marrow, where the blood cells come from. Collection of stem cells from the blood is known as peripheral blood stem cell harvest. Your donor will have a few days of treatment to prepare them for the stem cell harvest. This involves a short course of injections of a growth factor called G-CSF. G-CSF stimulates the production of stem cells and helps them to move from the bone marrow to the bloodstream. This process is called mobilisation. Once the stem cells have moved into the bloodstream, your donor will come to hospital to have the cells harvested. Stem cell harvesting is done using a machine called a cell separator. A constant flow of blood is taken from one arm, passed through the machine, and then given back into the other arm. The cell separator collects the stem cells and transfers them at intervals to a collection bag before returning the remaining cells. Harvesting from a healthy donor usually takes one session lasting a few hours. Occasionally the donor will be asked to come back the next day to give a bit more. 21

24 If your donor is not related to you, their marrow or stem cells will be collected near to where they live. The cells will be sent to your treatment centre by courier. Tests and other preparations There are other preparations to make before your transplant, both medical and practical. Tests and investigations You will need to have other tests before your treatment begins. Many of these will be tests you have had before. The information collected before your transplant serves a number of purposes. It is used to find out about your general health and whether or not you have any underlying health problems that need to be taken into account. It will provide information about your lymphoma, so that your team can measure the success of your transplant. It is also important to know what is normal for you, so that changes that occur as side effects of treatment can be measured. Blood tests Blood tests will include your blood count, your blood group in case you need a blood transfusion in the future, your blood chemistry and tests to show how well your liver and kidneys are working. Blood tests will also find out if you have had any viral infections in the past that could flare up when your immunity is low. For example, you will be tested for the presence of a particular virus called CMV, or cytomegalovirus. You will find CMV discussed in greater detail on pages Re-staging If you have active lymphoma, or disease that has not responded to initial treatment, you might need to have restaging tests. These tests will measure the extent of your lymphoma before your transplant. This might include scans and a bone marrow biopsy. 22

25 Lung function tests Some hospitals will arrange lung function tests. These tests measure how much air your lungs hold, how fast you can breathe in and out, and how well your lungs move oxygen and carbon dioxide to and from your blood. As you might expect, lung function tests involve a lot of breathing in and breathing out. Sometimes this means breathing normally and sometimes you will be asked to blow as hard as you can, or do breathing exercises. Sometimes your lung function will be tested while you exercise. Lung function tests also involve blood tests so that the amount of certain gases (such as oxygen) dissolved in your blood can be measured. Lung function tests take about 1 hour. There should be no side effects, but you might feel a little tired afterwards. Echocardiogram or MUGA These two tests measure the efficiency of your heart. They test the fitness of the heart muscle and the amount of blood pumped with each beat. An echocardiogram uses high-frequency sound waves or ultrasound to take pictures of your heart s chambers and valves. It is painless and takes about minutes. You will be asked to strip to the waist and you will be given a gown. A jelly which will feel cold is applied to the left side of your chest. An instrument like a fat pen will be moved over the jelly to take pictures which show up on a small screen next to you. In a MUGA scan you are given an injection of a dye. The dye shows up in your bloodstream as pictures on a screen as your heart moves the blood around. You will be given two injections into a vein, half an hour apart. The scan involves lying on a couch with the camera over your chest. It takes about an hour and a half. You should have no tea or coffee for 4 hours before the scan. 23

26 Kidney tests All hospitals will do tests to measure how well your kidneys are functioning. One such test is called a GFR test (short for glomerular filtration rate test). This test involves injecting a dye into a vein and taking blood samples to measure how well the kidneys drainage tubes are filtering out the dye. You are given the injection of dye, usually in the morning, and then you have blood tests 2, 3 and 4 hours afterwards. Your central line (see below) might be used for the collection of blood samples. A similar kidney test measures something called the creatinine clearance. This involves collecting your urine for a period of 24 hours and having a blood test. Central line You will have a central line inserted if you do not already have one. A central line is a soft rubbery tube that is put into a vein. The line goes in through your skin, usually on your upper chest below your collarbone, into a vein under the skin there. The tip of the tube is moved forward until it sits in a larger vein closer to your heart, deep inside your chest. Freephone Helpline For more information about central lines, please telephone our helpline. A central line is a more permanent intravenous tube than those that go into the back of your hand when you have a drip. It can remain in position for the duration of your treatment and for some time afterwards. Central lines make it easier to give treatments and to take blood samples without the need for repeated needles. You might hear a central line referred to as a Hickman or a Groshong line, depending on its brand. Central lines are inserted by a doctor or specialist nurse under a local anaesthetic. Sometimes a general anaesthetic will be used. The position of the tube needs to be checked on an X-ray before it is used. A clear dressing will be put over the top of the tube at the place where it goes into your skin. You will be given information about taking care of your central line. 24

27 Your central line may be a combination of two or more separate tubes or lumens. Each lumen will have its own plug so that blood can be taken from it or a tube connected to it. Having more than one lumen means that you can have more than one tube attached to you at a time for treatment. Chemotherapy You might have another course of chemotherapy before your stem cell transplant. The chemotherapy you have and when you have it will depend on your individual situation. If you have relapsed following previous treatment, or if you have residual disease, this chemotherapy will aim to reduce your lymphoma as much as possible. You might hear this referred to as salvage chemotherapy or remission induction. This chemotherapy is in addition to the conditioning chemotherapy given before the transplant. Radiotherapy planning Some people will have total body irradiation as part of their conditioning. This might mean you receive an additional outpatient appointment to see a radiation oncologist to discuss this. Your radiotherapy team will need to measure your height, weight and body shape to calculate your radiotherapy dose. You will be positioned on a bed, and your body will then be padded with squishy bags. The bags are to make your body into a block shape. This ensures that all parts get an even dose of radiotherapy. You will find more more information about conditioning and total body irradiation on pages You will also be given a test dose of radiation. Small measuring devices, taped to your clothing, measure how much radiation reaches different parts of your body during the test dose. Other preparations There will be a number of things to think about and organise before your transplant. Your transplant coordinator will discuss these things with you, depending on your individual situation and the kind of treatment you are having. This could include some of the following considerations. 25

28 Stop smoking If you smoke you should stop. Smoking will significantly increase your risk of complications. It will increase the risk of long-term side effects. Your hospital or GP will have information and advice about giving up. If other members of your family smoke too, perhaps you could all try giving up together. Fertility and contraception Your treatment might have an impact on your fertility. You might be offered storage of sperm. Eggs can also be stored in some centres but this is more difficult and can be unreliable. Some people might be offered storage of embryos before their treatment but this might not be possible. Talk to your transplant coordinator about your options. Women who have a coil or IUD should have it removed before treatment begins. Women who are still having periods are sometimes prescribed hormone medication to stop their periods. This is to avoid the risk of heavy bleeding when you have a low platelet count after your transplant. You should avoid pregnancy before your transplant. Continue to use reliable contraception. The dentist You might be advised to see your dentist for a check-up. This is to check for any teeth problems that could be made worse by treatment, or that could be a potential cause of infection. Family and friends You will have information about the coming months and what to expect. Share this with those close to you. Explain to people that when you are in hospital there might be days when you don t feel well enough to have visitors. And let people know that your treatment doesn t end when you go home from hospital. In fact, a big part of your treatment will take place in the weeks and months after you go home. This information will help them to support you while you recover. 26

29 Many people have stem cell transplants some distance from home. You might have to consider travel and accommodation for those close to you. Your transplant coordinator can provide information about local facilities and what the hospital can provide or recommend. Financial and social support Give some thought to the different roles in your life and arrange help in advance to support you over the coming months. If you live alone, and particularly if you are over 65, find out about what support might be available to you after you come home. If you care for someone else, find out what support will be available for that person. You might be entitled to financial assistance. You could be eligible for benefits, and some organisations provide grants to people in need. You will find further sources of information about benefits and financial support in the Further Information section at the end of this booklet. Ask whether the hospital can provide a social worker for further advice. You can also contact your local council social services department. This will be listed in your phone book under your district council. Work and study Explain your treatment to your employer, your school or university. Explain that it will be several months before you feel back to normal. Students should discuss the situation with their tutors, who might suggest delaying parts of your course, or extending deadlines for coursework. They will usually be as flexible as they can. Macmillan also produce a booklet called Work and Cancer. You will find their details in the Further Information section at the end of this booklet. 27

30 Things to take to hospital You are likely to be spending a lot of time in a room by yourself, so think about things to make it more comfortable. Hospitals have their own rules about what you can bring with you. The rules are made to keep your room clean and reduce the risks of infection. Ask about what your hospital recommends. The table below offers some suggestions. Things to take to hospital Things to cheer up your room Things to pass the time This might include photographs of friends and family. Perhaps you have a favourite painting, or a child s drawing. You might want to bring in a colourful throw for your bed, provided it can be properly laundered beforehand. Ask the nurses what you are allowed to bring. Some people take books, but there will be times when you will find it hard to concentrate on reading. Try shorter stories, or other reading material that is not too demanding, such as magazines. MP3 players and ipods are popular. You might like to take other things to listen to, like audio books or relaxation CDs. Bring a variety of things to listen to, so you don t associate one artist or song with your hospital stay, which might put you off them in future. A television is likely to be provided in your room, but you may have to pay for it. Ask about the costs as you may need to budget for it. 28

31 You may have a DVD player so you can bring in favourite programmes, movies and games. Some people take in hand-held games consoles or games to hook up to the hospital television. Ask if you can bring in a laptop and, if so, whether you can connect to the internet. If you have a hobby, get supplies. You might want notebooks and pens for journal writing or drawing. Maybe you enjoy card games, knitting or tapestry. Things to wear Take in some lightweight, comfortable clothing, preferably in natural fibres. Take plenty of clean underwear. Dressing in your own things can make you feel brighter and more comfortable. Get a supply of loose-fitting pyjama or tracksuit bottoms, shorts, socks and soft tops. Try to get tops that button up the front, as this will make it easier for doctors to examine you, and for nurses to care for your central line and give you your treatments. Slippers should be machine washable. Don t bring anything too valuable, as some of the medicines or treatments might stain clothing. Things for personal hygiene Get yourself a toothbrush with very soft bristles. Ask what your hospital recommends regarding mouth care and skin care. You may wish to take some soothing body lotion with you, but take advice on this. 29

32 Get a supply of soft toilet roll. Some units recommend flushable wet wipes. Ask for advice about soaps and shower products. Some units may recommend the use of antibacterial products. Communication Ask about telephones and whether you will have your own. Ask about what it will cost, as this will add up over the course of your stay. Ask about whether you can use a mobile, or whether you will have internet access for . If you will have a telephone, consider taking an answer machine with you, so people can leave a message if you don t feel like answering. 30

33 Summary You will be put in touch with the transplant coordinator at your treatment centre. He or she will provide you with lots of information about your donor stem cell transplant. You may need to take someone with you to meetings to help you recall what is said. You can contact your transplant coordinator with any questions. It will be up to you to decide whether or not to have the donor stem cell transplant. You will be made aware of the risks and possible benefits. Some of this information might be upsetting, but you need to have this information before you make your decision. The transplant coordinator will begin finding a suitable donor. Your donor will be someone with a tissue type as close as possible to yours. Your brothers and sisters will be tested first. If they do not match, or if you have no siblings, the transplant coordinator will try a bone marrow register to see if a match can be found from a list of national or international volunteers. You, your family and your team will make a timetable for the coming months. It might be many weeks before the transplant itself takes place. As far as possible things will be planned to fit in with your life. You will need to have further tests. You may need further chemotherapy. You will have a central line inserted. There will be practical preparations to make too. Find out about what help will be available to you after you leave hospital, particularly if you care for other people. Think about what to take to hospital and start putting it together. 31

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35 Part Two While you are in hospital 2 Once all of the initial preparations are taken care of, you will be ready to begin your treatment. This part of the booklet deals with the first stage of your donor stem cell transplant. It will discuss: Conditioning Infusion of stem cells and engraftment Side effects and supportive care Graft-versus-host disease and other possible complications Being in isolation Conditioning You might hear your doctors and nurses talk about your conditioning. Conditioning is the word used for the anti-lymphoma treatments that you have before your transfusion of donor cells. Conditioning does a number of things: It reduces your lymphoma. It suppresses or eliminates your own bone marrow to allow room for the healthy replacement cells. In many cases conditioning will include drugs to prevent you from rejecting your donor cells, and to reduce graft-versus-host disease. 33

36 There are many different conditioning treatments in routine use. The conditioning you have, and the sequence and timing of treatment, is called a protocol. A protocol is like a set of instructions that maps out what drugs are given and on what days. The protocol you have will depend on your individual situation. You will be given information about the treatment you will be having, when you will have it, and what side effects it will cause. Conditioning usually means having one or more chemotherapy drugs. It might include total body irradiation. It might include drugs to reduce the numbers of your own immune cells, or to reduce the immune cells from your donor. Conditioning is usually given over a period of 5 8 days, immediately before the transfusion of donor cells. Chemotherapy Chemotherapy will be given via your central line. Some of the drugs may be injections straight into your line and others will be given mixed up in a bag and dripped in slowly through your line. Bags of fluid may be fed through a machine to regulate the flow. Don t worry if the machine beeps from time to time. Flow will be stopped until the glitch is sorted out. Some chemotherapy might be covered by a black bag. This is because the drugs are sensitive to light. You may have extra bags of fluid to go with chemotherapy. You will be given drugs to prevent side effects, before and during your chemotherapy. You can experience side effects soon after having your chemotherapy, but most side effects begin after a few days. Side effects are discussed in further detail on pages

37 Total body irradiation Some people will have total body irradiation (TBI) as part of their conditioning. TBI is different from standard radiotherapy. Your whole body is treated at the same time and the dose is given over a shorter period. TBI schedules can vary. Some centres give two treatments a day, morning and afternoon, for 2 4 days. In some cases treatment will be shorter. You will be told about your treatment schedule beforehand. You will be carefully positioned, and your body will be padded with bags a bit like small sandbags. You will need to remain as still as possible for the time it takes to give you your treatment. Each side of your body will be treated separately. The bed will be rotated so you won t have to change position. It takes about minutes each side. You can bring CDs to listen to and the radiotherapy room will have something to play them on. You will be on your own in the room during treatment, but the team will be in the next room, and you will be able to talk to each other. Wear lightweight and comfortable clothing with no zips. Be sure to remove all jewellery beforehand. If you are having TBI it will usually be given just after your chemotherapy and immediately before the transfusion of stem cells. Stem cell infusion The transplant of your donor stem cells is much the same as a blood transfusion. The bag of cells will be brought into your room, thawed out if necessary, and then given to you through your central line. It takes about 40 minutes. Many people say that the transplant itself is a bit of an anticlimax after all the preparation. 35

38 If you are having a transfusion of whole bone marrow, the bag will be bigger and might take longer to transfuse. You will be carefully monitored during the infusion of the stem cells. Be sure to tell someone if you feel unwell. You may experience some side effects from a chemical used in the preservation of the stem cells. This chemical is called DMSO. It can cause a change in your taste sensation and you can feel flushed. These side effects don t last long. It also has a distinctive smell some people say it smells like sweetcorn. Your breath might smell like this for a short time. You might hear your team refer to your transplant day as day zero. This is because they measure your recovery starting from this day. Engraftment 36 Once they are inside your body, your donor stem cells make their way from your blood to your bone marrow. Then they graft onto your marrow, and start dividing to make new bone marrow and blood cells. This process is known as engraftment. Engraftment varies from person to person, but it usually happens between 10 and 21 days after your donor stem cell infusion. The first and most important cells to engraft are the cells that form the neutrophils. Neutrophils are white blood cells that fight bacterial infection. The cells that form platelets are the next to engraft. Platelets are the cells that enable your blood to clot and so they help prevent bleeding. The final cells to engraft are the cells that form red blood cells. Red blood cells carry the oxygen in your blood. Don t worry if this seems to be happening in a different order from this everyone s engraftment is different. You might be given drugs called growth factors to encourage the production of new blood cells.

39 Side effects and supportive care A donor stem cell transplant is a complex procedure. It is also associated with significant risks and side effects. A team of experienced nurses and doctors will support you during the period immediately after your transplant. You will have lots of medication and treatments to keep you as safe and as comfortable as possible. Some transplant centres can provide other therapies, such as counselling, aromatherapy and relaxation exercises. Your supportive care will aim to: encourage engraftment treat side effects prevent and treat bacterial and viral infections prevent and treat graft-versus-host disease. Low blood count You will have a low blood count for some time after your transplant perhaps even months. This means that your blood cell counts will be below the normal level. There are a number of problems that can happen when your blood count is low. You might have a shortage of red blood cells called anaemia. Your red blood cells carry oxygen to your body s other cells. Anaemia can make you feel tired. It can also make you short of breath. Freephone Helpline For more information about the blood count, please telephone our helpline. You might have a shortage of platelets, also known as thrombocytopenia. Thrombocytopenia will mean you are more at risk of bleeding until your platelet levels recover. You should tell your nurses if you notice any signs of bleeding, such as blood when you pass urine or after a bowel movement, bleeding gums or a nosebleed. 37

40 You might need transfusions of blood cells at some point during your recovery red blood cells take about 3 4 hours per bag, and platelets about half an hour per bag. You will be observed regularly during transfusions. It can take some time before your blood cell counts return to normal. You might still have anaemia and thrombocytopenia for some time after you go home. Another significant risk of a low blood count is the risk of infection. Risk of infection You will have a low white blood cell count too, which is known as neutropenia. This means you will be at increased risk of infection. You will be at increased risk of infection for some months after your transplant. This means that an important part of your supportive care will be the prevention and treatment of infection. The rules and regulations about your hospital environment will also aim to reduce the risk of infection as far as possible. You can get infections from the organisms that normally live harmlessly in your body. We all have bacteria that live in various places, such as in our digestive systems and on our skin. The same goes for viruses most people carry viruses that don t usually cause problems. But a reduced immunity means that your body does not have the ability to keep these organisms under control. Normally harmless bacteria and viruses can flare up and cause problems. Infection can also come from outside such as from food, from your immediate environment, or from other people. Your room will be cleaned every day and your bedlinen will be changed. You will need to shower regularly, even on the Freephone Helpline For more information about neutropenia, please telephone our helpline. 38

41 days when you don t feel up to it. You can usually sit down in the shower if you don t have much energy. Regular mouth care is essential. You will need to take particular care to wash your hands after using the toilet and before eating. Take care not to injure yourself. Small cuts or scratches can cause problems. Avoid shaving and take care when trimming fingernails and toenails. You will be given information about food. Some foods are not recommended, as they are more likely to carry bacteria. The hospital might have rules against having fresh flowers in your room because the water in the vase encourages mould and bacteria. There may also be restrictions on visitors on how many you have or the age of permitted visitors. You will be at increased risk of infection for some months after your treatment. It will be months until your body starts to make white blood cells in normal quantities. In addition, the drugs you have to prevent or treat graft-versus-host disease will also reduce your ability to fight infection. You will be closely monitored to check for signs of infection. Your temperature and pulse will be monitored at regular intervals, including at night. You should tell someone straightaway if you have any signs of infection, such as: raised temperature, sweats, shivering sore mouth or difficulty swallowing sore throat or earache rashes, or spots on your skin red, inflamed areas cough or shortness of breath pain when passing urine diarrhoea. 39

42 It is possible to give transfusions of white cells, in the same way as red cells and platelets are transfused, however this is rarely used as it is difficult to give a big enough dose to be effective. You will be given antibiotics and antiviral drugs to prevent and treat infections. Some of the anti-infection medications will be given in your drip. You will also have tablets to take after you go home. Infection is common after a donor transplant and most people will get infections both in hospital and after they go home. Don t panic if this happens to you. It is important to remember that infections can be treated. But it is particularly important that you seek help straightaway if you have a temperature or any other signs of an infection. Don t forget... Nausea, vomiting and diarrhoea You are likely to have nausea and diarrhoea at some point during your treatment. You might also experience vomiting. These can be caused by the chemotherapy or radiotherapy, which will damage the cells of your digestive system. Infection in your gut or graft-versus-host disease can also cause nausea and diarrhoea. Other medicines can cause these problems too. 40 You will be given medications to help. If these don t work, tell someone. There are usually alternative anti-sickness medications to try, and you might have to try a couple to find one that works. Some people have continuous anti-sickness medications through a syringe attached to a small pump. If you have diarrhoea, you might find that incontinence pads or sanitary towels give you added protection if you find it hard to get to the loo in time. The unit might be able to provide these, but your family might have to bring them in. Ask your nurses about this. In many units you will have your own toilet and shower. Freephone Helpline For more information about coping with side effects, please telephone our helpline.

43 Sore mouth You can develop a sore mouth or mouth ulcers after your treatment. This is called mucositis if it is severe. Good mouth care can make a big difference. You will be given information about mouth care. Your team will be able to recommend a mouthwash. Many units will provide mouthwash. If you don t like the taste there is usually an alternative. Freephone Helpline For more information about mouth care, please telephone our helpline. If your mouth is painful, ask for pain relief. Tell someone if it doesn t work. A sore mouth can put you off eating and so interfere with your nutrition. See the section on dietary problems below. Dietary problems You will lose your appetite for some of the time. A sore mouth might make eating painful. Food will taste different, too. You will be offered food at regular intervals. Eat what you can but don t worry if you can t manage the whole portion. Big portions of food can be off-putting if you have no appetite. You might find it easier to divide larger portions and eat smaller portions from a separate, clean plate. If you have visitors at mealtimes, perhaps you could eat together. Ask your nurses for detailed information about what food you are allowed to eat and what food isn t safe. Occasionally people will be offered a feeding tube as a shortterm measure. The feeding tube is a soft tube that goes in your nose and down into your stomach. It means you can be fed with specially prepared nutritious liquid without the discomfort of swallowing. Some people may be prescribed intravenous feeding if their mouths are too painful. Eating problems should only be short-term. You may be offered nutritional drinks to support you until you can eat more normally. You may need advice from the hospital dietitian. 41

44 Hair loss Some chemotherapy can cause temporary hair loss. It may come out when you brush your hair, or on your pillow overnight. Some people prefer to have their hair cut short or to shave their heads before their hair starts to fall out. You can lose body hair too, and eyebrows or eyelashes. Let the staff know if you are getting sore eyes. Your hair will begin to grow back after a couple of months. Sometimes it grows back looking different from the hair you had before. Freephone Helpline For more information about coping with hair loss, please telephone our helpline. My hair was straight ginger and it has now grown back curly and brown! Talk to your team about this. You might want to bring scarves or hats to hospital with you or you might want to organise a wig. Remember to take care of your scalp after you go home. You will need to protect it from heat and cold. Hats are advisable in both sunny and cold weather. Your skin will be more sensitive to the sun after chemo and radiotherapy and you will need to wear a hat and high-factor sun cream for at least a year afterwards. Bladder problems The drugs cyclophosphamide and ifosfamide can cause irritation and bleeding from the lining of the bladder and the kidneys. You will have to drink lots of extra fluid with these treatments and you might be given extra fluid through your drip. A drug called mesna is given to prevent bladder and kidney complications. It is given with ifosfamide and sometimes with cyclophosphamide. Your nurses will check your urine for signs of blood. If you notice blood in your urine yourself you should tell someone straightaway. Ask your team for advice about prevention of bladder problems. 42

45 Fatigue You are likely to feel very tired, and will probably spend a lot of time sleeping. You will not have the energy to do very much, and you might find it hard to concentrate on reading or watching television. You might feel too tired for visitors. Explain to friends and family beforehand that it might be hard for you to see people from time to time and that you might not be able to see them for very long. Encourage visitors to telephone and check how you are feeling before they come to see you. They might want to contact your closest relatives first to avoid disturbing you. Fatigue is one of the most common experiences after a transplant. It will improve gradually but you are likely to feel unusually tired and easily exhausted for some time after you go home. Graft-versus-host disease and other complications This section will discuss some of the other potential complications of a donor stem cell transplant: Graft-versus-host disease CMV and PCP infections Veno-occlusive disease Freephone Helpline For more information about fatigue, please telephone our helpline. Acute graft-versus-host disease Graft-versus-host disease (GVHD) is a common complication of a donor stem cell transplant. GVHD happens because you grow a new immune system after your transplant. The white blood cells of your new immune system are the same as your donor s immune cells. They are different from all of your other body cells. 43

46 Your new immune system will recognise that your other body cells are different or foreign. This means that they can mount an attack against parts of your body. Your new immune system is known as the graft, and your body is the host. Having some degree of GVHD is good in one way it means that your new immune system will hunt out and kill your lymphoma cells. However, the downside is that GVHD can cause other problems that need treatment. GVHD can start 2 3 weeks after your transplant. GVHD that develops within 3 months of your transplant is called acute GVHD. It can also happen later, perhaps after many months. When it happens later it is called chronic GVHD. Chronic DVHD is discussed in on page 63. Acute GVHD is most likely to affect the stomach and intestines, the skin and the liver. GVHD in the skin can cause a rash, often starting on the palms of your hands or the soles of your feet. It can make your skin red, dry, flaky and itchy. It can feel a bit like sunburn. If you have GVHD in your gut it will cause watery diarrhoea, and perhaps cramping abdominal pain. If it affects your stomach it will cause nausea, loss of appetite or indigestion. GVHD in the liver can cause itchy skin, and can make your skin turn a yellow colour. The whites of your eyes can turn yellow, too. This is called jaundice. If your liver becomes enlarged it can cause abdominal pain and swelling. It can also affect your lungs, causing shortness of breath. Other signs of GVHD include a persistent low fever, recurrent infection and anaemia. Of course, you might have some of these symptoms anyway because they are also common side effects of treatment. Having these symptoms does not necessarily mean that you have GVHD. If you are worried about your symptoms be sure to tell a member of the team. 44

47 Sometimes doctors can recognise GVHD without the need for tests. In other cases, a biopsy of the affected area may be required. This means taking a sample of the tissue and looking at it under a microscope. For some people GVHD will be quite mild and easily tolerated. For other people it can be more serious. You might hear your doctors refer to different grades of GVHD grades 1 to 4. The grades refer to how many parts of your body are involved and how severe it is. Some people do not get GVHD. It is hard to predict who will. GVHD can happen even if your donor is a very close match. However, you are more at risk of GVHD if: you are older at the time of your transplant your donor is unrelated to you your donor is a member of the opposite sex, especially if you are a male and your donor is a female who has had children. It is important to remember that having some degree of graft-versus-host disease is a good thing. Your new immune cells will hunt out remaining lymphoma cells and kill them. This is known as the graft-versuslymphoma effect, and it is one of the important aims of your treatment. Remember... Prevention of GVHD The management of GVHD is a bit of a balancing act. Your team will want to preserve the graft-versus-lymphoma effect but prevent the development of the more troublesome aspects of GVHD. The most important step in preventing GVHD is to find a donor with a tissue type as closely matched as possible to yours. But even if your donor is a close match, you will still be at risk of developing GVHD. 45

48 Drugs to prevent GVHD are given before and after the transplant of your donor stem cells. You will continue to take them after you go home from hospital. Several drugs are in routine use. What you have, and when you have it, will depend on your treatment protocol and the usual practice at your treatment hospital. Some of the possible treatments are discussed below. Ciclosporin Ciclosporin is commonly used to prevent GVHD. It works by suppressing the cells of your donor immune system to prevent them from reacting against your own cells. Ciclosporin is given through your central line to start with, and you will switch to tablets to take home. You might need to take it for some months after your transplant. Ciclosporin can cause a number of side effects. You will be given information about this. It can affect your kidney function. You will need to drink plenty of extra fluids to help protect your kidneys. Regular blood tests will keep an eye on how well your kidneys are functioning. You should not eat grapefruit or drink grapefruit juice while you are taking ciclosporin. Grapefruit prevents your body from processing ciclosporin. Alemtuzumab Like ciclosporin, alemtuzumab, or Campath, suppresses your donor immune cells to stop them attacking your own cells. Alemtuzumab is given as an infusion through your central line. It can cause flu-like symptoms such as chills and shivers, particularly with the first dose. It can cause skin rash. These side effects can be treated. You will be given information about the side effects of alemtuzumab. 46

49 ATG Another drug called ATG is used to prevent GVHD. ATG stands for anti-thymocyte globulin. It targets T cells to stop them from working. ATG causes side effects similar to those caused by alemtuzumab. Methotrexate Methotrexate is a type of chemotherapy that can be given in low doses to prevent GVHD. It is usually given for up to 4 doses after the transfusion of donor stem cells. You will be given information about the side effects of methotrexate. It is important to remember that all of the drugs used to prevent or treat GVHD will suppress your immune system. This will make you more at risk of infection. You should tell someone immediately if you have any signs of infection. The main signs of infection are listed on page 39. Don t forget... Treatment of GVHD GVHD can be treated in a variety of ways. Steroids are commonly used to treat GVHD. Steroids are chemicals that occur naturally in the body but they are also made artificially and used to treat a wide range of illnesses, including cancers such as lymphoma. Steroids work by suppressing your immune system and reducing inflammation in the affected tissue. The steroids most often used are methylprednisolone and prednisolone. They can be given for prolonged periods if necessary. Steroids are given in high doses to start with and then gradually reduced. It is important that they are not stopped suddenly, all at once, and you will be given a card to carry with you that explains that you are taking these drugs. 47

50 Steroids can cause a variety of side effects. You will be given information about this. GVHD can also be treated using the same drugs that are given to prevent it, as mentioned above. You will be given information about whatever treatment you are prescribed. You may hear of the following: tacrolimus or Prograf antilymphocytic globulin (ALG) pentostatin other monoclonal antibody therapies. Freephone Helpline We can provide further information about steroids. Please telephone our helpline. Doctors are trying to find out more about how best to prevent and treat GVHD. Clinical trials continue to compare different drug combinations. You might be asked to take part in a clinical trial. Chronic graft-versus-host disease Chronic GVHD can develop from 3 months onwards. You can get chronic GVHD even if you did not have acute GVHD see the section on page 63 of this booklet. GVHD and sibling donors Donors in particular sibling donors can find it difficult to deal with GVHD. The fact that their cells are causing problems for your body might mean that they feel guilty or responsible. Siblings should be reassured that some GVHD is expected, and that some GVHD is even desirable. They should be reminded that their cells are also fighting your lymphoma cells and that without them the transplant could not have happened at all. CMV and PCP 48 Cytomegalovirus (CMV) is a virus that more than half of us have been exposed to, usually in early adulthood. It causes flu-like symptoms and it is not usually diagnosed or treated.

51 You might not even know whether or not you have had it, but blood tests before your transplant will find this out. Your donor will be tested too. Once you have had CMV, it stays in your system and usually causes no problems. But there is a good chance that your CMV or the CMV from your donor will become active again when your immune system is suppressed. CMV can cause a number of problems, including a lung infection called pneumonia. It is important that CMV is detected and treated to prevent pneumonia developing. You will have a regular blood test called a PCR test to check for CMV. This test is done once or twice a week for several months. CMV will usually be picked up in the blood test before you have any symptoms. CMV infection is treated with antiviral drugs. These include ganciclovir and foscarnet. These are given as an infusion into your central line. Sometimes treatment for CMV takes several weeks. If you develop a CMV infection after you go home, you will need to come back and stay in hospital for treatment. When your immune system is suppressed you can also pick up an infection called Pneumocystis pneumonia (PCP) caused by Pnemocysits jirovecii (previously called Pneumocystis carinii). This bug is in the air and causes no problems in someone with a healthy immune system. You will be given treatments to prevent PCP infection. While you are in hospital this will be an antibiotic (pentamidine) that you breathe in through a machine called a nebuliser. This is a mask that you hold over your face while you breathe in the drug in a moist vapour. You will have antibiotic tablets for this after you go home until your blood counts recover. Treatments include cotrimoxazole (Septrin ), azithromycin (Zithromax ) or dapsone. You may continue to be given the nebulised pentamidine once every 4 weeks. 49

52 Veno-occlusive disease (VOD) Veno-occlusive disease is inflammation of the small veins in your liver, which makes it hard for blood to get through. It sometimes happens as a complication of a donor stem cell transplant. It causes pain in your liver and yellowing of the skin, or jaundice. A drug called heparin may be given to prevent this. Heparin makes the blood less likely to clot, and more able to get through the inflamed blood vessels. Heparin is given into your central line. Being in isolation The rules about whether or not you will be in an isolated room will vary from place to place. Some hospitals will let you stay at home or in nearby accommodation until you need more constant support and monitoring. Others will admit you to your own room before you have your transplant. But most people having a donor stem cell transplant in the UK will spend a prolonged period of time in a room on their own. Your nurses and doctors will be in and out regularly, but you will be by yourself a lot of the time. It can be difficult being alone, feeling sick and tired, and without the energy for much distraction. Daily routine Each day you will have a regular stream of doctors and nurses coming in for one of many treatments and observations, including: regular monitoring of your temperature, pulse and blood pressure weighing you each day examination of your chest, your abdomen and your central line 50

53 taking blood for a variety of tests measuring fluid intake and output administration of medicines and other supportive treatments. You will also see senior members of your medical team on a regular basis. Ask about when this will be. In between these activities there will be regular meal times and you will also be expected to take care of personal hygiene. Try and make the effort to get up and showered and dressed in your own clothes each day, even though there will be days when you don t feel like it. Make sure you have plenty of clean clothes to change into. You will be most comfortable in lightweight, loose fitting clothing in natural fibres. You will have to wash your hands carefully after using the toilet and you will be provided with an antibacterial wash or gel to use. Regular mouth care is essential to prevent infection. You will be given information about this and provided with mouthwashes. You won t feel like doing much for a lot of the time. You will sleep a lot. Make sure you have lots of different things to watch and listen to. Make an effort to get up, showered and dressed each day, and plan small tasks or distractions at regular intervals to break up the time. Try to keep visiting times free for seeing your family and friends. Remember... Communication Communicating with those caring for you is a critical part of your care. Be sure to talk to your team about anything that is on your mind. 51

54 Let them know how you are feeling. You will have an important role to play in keeping them informed. Tell your team about your side effects. Tell them if a drug to prevent a side effect isn t working. Tell them if you have a problem with mouthwashes, for example, or with eating. Your team will expect you to keep them informed, and could assume you are OK unless you say something. Talk to them about your worries or concerns. If you don t understand what you are told, ask again. The people working on a transplant unit are usually very experienced in supporting people with cancer, and they will be happy to help in any way they can. They will understand if you are worried or frightened. They will be at ease talking to you about your care and your feelings, and will be used to people asking lots of questions. They won t mind if you have to ask the same questions again they will be surprised if you don t. Try and keep in touch with friends and family too, if you feel up to it. Some units can arrange for a telephone in your room, but ask about this in advance and get information about what it will cost. Some units offer an internet connection. You might be asked not to use your mobile phone. Encourage people who won t be visiting to send cards and short letters. Encourage them to write about things other than your illness you might welcome the distraction. These can be put up in your room to remind you of those you love. Photographs and children s drawings can also give you a boost and help the hospital room seem more personal. Visitors Visits from people close to you will provide welcome distraction and emotional support. Visitors will bring news and updates about life at home, and help you to feel connected with life outside your room. 52

55 There will be times when you don t have much energy for visitors. Explain to people beforehand that you might not feel strong enough to see them, or that you might only have the energy for very short visits. Try to avoid having too many visitors at once. Encourage them to check that you feel OK before they make the journey to visit you. I did really look forward to visitors after about the second week but only for a short time. Little and often makes the time seem shorter and is like a breath of fresh air. There may be rules about visitors to prevent you from exposure to infection. But your team will understand the importance of seeing those you love, and the rules about visitors will be as relaxed as possible. Visitors will be asked to wash their hands with an antibacterial hand wash before coming into your room. Visitors should not come to see you if they have an infection. Many hospitals suggest that young children should not visit because they are exposed to lots of infections in nursery and school environments. Keep active if you can Exercise is important even a small amount will be helpful. Do stretching exercises and move your limbs around to maintain circulation and prevent yourself from feeling stiff. Leg raises can be done while you are lying on your bed. Walk around your room. You might be allowed out of your room from time to time to go for a walk and have a change of scenery. There might be short flights of stairs to use for exercise. Some units have exercise equipment, such as an exercise bike. Ask your team what they would recommend. Don t spend all your time in bed if you can avoid it. 53

56 Home comforts and distractions You might want to bring music to listen to, or audio books, for those times when you don t have the energy for reading or the concentration for doing puzzles or crosswords. Some people find it helps to keep a diary or start a blog, to note thoughts and feelings down when they feel like it. It can be very boring and frustrating to have lots of time to fill when you don t feel like doing much. Small activities showering, eating, mouthwashes can help to break up the day and give it structure. Ask your team what you can do to help with your care they might suggest that you keep a record of your fluid intake, for example. Suggestions of things to take to hospital are on page

57 Summary Conditioning is the anti-lymphoma treatment given before the infusion of donor stem cells. Conditioning treats your lymphoma and prepares your body for the donor stem cells by clearing out your own bone marrow cells. It also includes drugs to prevent graft-versus-host disease. Conditioning is given according to a set of instructions called a protocol. There are different protocols for the treatment of different lymphomas. Chemotherapy is given over a period of around a week. The exact chemotherapy you have will depend on your situation. Total body irradiation (TBI) is occasionally used for some kinds of lymphoma, and for lymphoma in particular parts of the body. TBI is given after chemotherapy and just before the infusion of stem cells. Your donor stem cell transfusion happens about 24 hours after your conditioning is complete. It takes about 40 minutes. A chemical called DMSO might have been used to preserve the stem cells. It has a strange smell and can cause short-term side effects. The day of stem cell transfusion is referred to as day zero. It takes about days before your body starts making its own blood cells. This process is known as engraftment. You will be at risk of getting an infection, and a lot of your care will be aimed at preventing this. You will have to keep yourself especially clean and take good care of your mouth. Don t feel you are to blame if you get an infection this is a common experience. Infections can be treated with antibiotics and other drugs. 55

58 You may not feel like eating very much. Ask family to bring in food that you might enjoy, but be sure this food is safe to eat. Ask for information about safe food and what you should be avoiding. Graft-versus-host disease (GVHD) is common after a donor stem cell transplant. It happens because your new immune system attacks your own body cells. A little GVHD is a good thing because it can kill the lymphoma cell, but GVHD can cause other problems in your body that would need treatment. The transplant team will try to maintain this balance with a variety of medicines. Treatment and prevention of GVHD will further suppress your immune system and increase your risk of getting an infection. Viral infections that you carry from earlier in life can flare up when your immune system is suppressed. CMV is one such virus that will be monitored. You might need to take antiviral medications. Have a good supply of things to keep you occupied, but you probably won t feel like doing anything too demanding. Try to break up your day with small routines, like mouthwashes, showering and eating. Try and be as active as you can. Stretching exercises and short walks make a difference. Encourage family and friends to keep in touch and make short visits. You might not feel like visitors some days. Get them to check with someone before they come in. Communication is critical. Be sure to communicate with the people looking after you. Tell someone about your side effects. Tell someone if your medicines don t seem to be working. Tell people how you are feeling. Ask questions. 56

59 Part Three After you go home 3 This part of the booklet deals with the next phase of your treatment. It will discuss: Going home from hospital Initial follow-up and monitoring of your new blood cells Longer-term follow-up and late effects of treatment Taking care of yourself and getting back to normal Going home You are most likely to go home between 5 and 8 weeks after your transplant. People will usually be discharged once their blood count has returned to a relatively safe level and the risk of infection is reduced. It is easy in the euphoria of getting out to overdo things. Lots of people want to come over and see you. I went to a friend s 50th birthday party the evening I was allowed home in retrospect, what was I thinking of?! You will go home with your central line or PICC. This will be removed when your team are confident that you don t need further treatment through it. Arrange for someone to give you a lift home. Ideally, this should be someone who is fit enough to help with your bags. You might need an extra item of luggage. You may have collected extra things during your time in hospital. Freephone Helpline For more information on life after treatment, please telephone our helpline. 57

60 Most people are more than ready to go home when the time comes, but leaving the protective environment of the ward, where doctors and nurses have been checking on you day and night, might feel frightening at first. It will be frightening for the people taking care of you, too. They might feel responsible for your health and they might find this responsibility worrying. People often expect to feel better because they are going home. Your family and friends might expect that discharge from hospital means you have recovered, but recovery will take a long time. Don t be surprised if you still feel exhausted, sick and without much of an appetite after you go home. You might still have a sore mouth or change in taste. You might still have graft-versus-host disease. You will still have a low blood count. You are likely to feel very weak. Chances are, though, you will be making good progress and you will be as well as can be expected, even if you still feel a bit rough. You will be given a list of names and the telephone numbers of people to contact if you are unwell or have a problem. Just because you are going home, this doesn t mean that your treatment is finished. In fact, an important part of your treatment begins with going home. You might feel worried about going home, and you might still be feeling rough and exhausted. This is completely normal. You can t expect to feel better straightaway. Don t forget... Medications You will be given a big bag of medications, and a long list of instructions about what to take and when. Some of these medications will be short-term. Some of them will be long-term. Some people will be prescribed drugs like antibiotics for the rest of their lives. 58

61 Initial follow-up Because donor stem cell transplants are highly specialised, your transplant hospital will continue to provide your care for the initial few months, even if it is a long way from home. In some instances, a hospital closer to home might take over part of your care in partnership with your treatment hospital. Your GP will be given information about your treatment and medications. Follow-up appointments will be twice a week for the first couple of weeks, then weekly for the first 2 4 months. Appointments are very regular because at this stage you still need careful observation and continuing treatment. For the first 3 4 months, your follow-up will concentrate on: your blood count and infections your new immune system treatment of any graft-versus-host disease adjustment of medications the impact on your lymphoma. It is common to feel worried and anxious about all of the care you need after discharge, but the ongoing treatment is to be expected. Your team will be closely following what has happened since you were in hospital, and adjusting your medications when necessary. Don t forget... It is common to go back into hospital for some kind of treatment at some point after discharge the team looking after you will be prepared for this, and you should be too. 59

62 Your blood count and infections You will still have a low blood count for several weeks after you go home. Your blood count will be checked on a regular basis. This means that you could have anaemia or low platelets. You might need to have transfusions of platelets or red blood cells. This can usually be done when you attend the transplant unit or can be arranged at your usual treatment centre if that is nearer. You will still be at risk of infections. This means infections that you get from someone else, but also infections from the bacteria and viruses that normally live in your system. You will continue to have medications to prevent infection. This includes antibiotics to prevent PCP, as discussed on page 49. You will have regular blood tests if you are at risk of a CMV flare-up. You may need to have antiviral treatments if there is any cause for concern. Treatment of infection is a common reason for readmission to hospital. Treatment of infections can take a long time. It can be very demoralising to have to go back to hospital after what was already a long stay, but it happens to many people. It does not mean that your treatment hasn t worked. Your team will be prepared for this possibility and it might help if you are prepared for it too. You will find taking care of yourself with a low blood count discussed on pages Your new immune system Your body will begin to produce white blood cells that have the same DNA as your donor stem cells. Eventually all of your white blood cells will be the same as your donor s. This gives you another immune system. Your new immune system causes the graft-versus-lymphoma effect that we discussed on page 9. The graft-versus-lymphoma effect is an important part of a successful donor transplant. 60

63 Chimerism Your team will check to make sure that you are making blood cells with donor DNA. For a period of time, you may have a mixture of blood cells with your own DNA and blood cells with donor DNA. After a year, all of your blood cells should have your donor s DNA. Regular blood tests will see what proportion of your blood cells have donor DNA. You may hear these blood tests referred to as chimerism. Donor lymphocyte infusion You may be given another transfusion of white cells from your donor to boost the graft-versus-lymphoma effect. This is known as a donor lymphocyte infusion. Your team may have stored donor lymphocytes at the time their stem cells were collected. If not, your donor will be asked to donate cells again. The procedure is similar to giving blood. Having a transfusion of donor lymphocytes is much the same as any other transfusion. They are given in a bag into your central line. You will be monitored during the procedure. You don t have to stay overnight for a donor lymphocyte infusion. They can be given in the clinic and each bag takes about 10 minutes. Infections and graft-versus-host disease You may also develop graft-versus-host disease. Symptoms of graft-versus-host disease include itchy or red skin, diarrhoea, nausea and abdominal pain. Of course, your medications can cause side effects, and it might be hard to tell the difference between side effects and other complications. The safest thing is to get in touch if you have any concerns. Be sure to contact the hospital 61

64 straightaway if you develop any signs of infection or if you have any symptoms that you are worried about. The changes and adjustments to your blood count and your immune system are largely out of your control. You should do what you can to rest, eat well, take good care of yourself and gradually get back to normal. But this will take time. You should expect steps backwards as well as forwards. It will be a matter of waiting for your body to adjust and recover. Don t forget... Adjustment of medications The first few months after discharge are a bit of a balancing act. Your team will want to preserve the graft-versuslymphoma effect but avoid unpleasant complications. Some of your most important medications like those that prevent GVHD and infection will also slow down white cell production and delay the recovery of a healthy immune system. Your team will aim to gradually reduce these preventative medicines and allow your immune system to recover. This means a process of continually looking at your test results and adjusting your medications accordingly. Don t be alarmed if your treatments change from time to time. This is what your team will be expecting. Your lymphoma Of course, your team will also want to find out what has happened to your lymphoma. You might have repeat scans or a repeat bone marrow biopsy to measure the reduction in your lymphoma. These tests are likely to be repeated at regular intervals for several years. 62

65 Longer-term follow-up Eventually the gaps between appointments will get longer. After the initial recovery period is over, your team will be able to look beyond the transplant itself and you can start thinking about getting back to normal. Your team will continue to monitor your lymphoma and you might have repeated scans. Appointments in the longer-term will also deal with: chronic GVHD late effects of treatment getting back to normal. Chronic graft-versus-host disease Chronic GVHD can develop from 3 months onwards. You can get chronic GVHD even if you did not have acute GVHD. You might recall from the discussion earlier in this booklet that a little GVHD is a good thing because it should keep your lymphoma under control. However, it can cause serious problems that need treatment. Chronic GVHD can be mild but for some people it will be quite debilitating. It can interfere with quality of life and can last for a long time. Like acute GVHD, chronic GVHD can affect your skin, gut, liver or mouth. In its chronic form it also has the potential to affect other parts of your body, such as your eyes, your joints and your lungs. You should contact your team straightaway if you develop any troubling symptoms, even if it means bringing forward an appointment. These might include: skin rashes, flaking or itchy skin, changes in skin colour or texture, tightening of the skin dry or irritated eyes 63

66 dry or sore mouth thinning of hair changes in your fingernails diarrhoea, nausea, unexplained weight loss. Treatment of chronic GVHD differs from centre to centre. You might be offered some of the same treatments as those used for acute GVHD. This includes treatment with steroids. Some centres offer different treatments that aim to prevent your new cells from reacting against your own cells. There is a lot of interest in the use of ECP (extra corporeal photopheresis) which uses UV light to change the blood cells that lead to chronic GVHD. Clinical trials are looking at new treatments. Late effects of treatment You will be checked for late effects of your treatment. These are effects that can occur months or years afterwards. Your risk of late effects will depend on what type of conditioning treatment you had and on the other treatments you were given to prevent or treat complications. Because there are so many different treatments used for donor transplants, this booklet is not able to cover the subject of late effects in detail. You should ask your consultant or transplant coordinator what to be aware of. Freephone Helpline For more information about late effects of lymphoma treatment, please telephone the helpline. Fatigue It is likely to take at least 3 6 months before your energy levels recover, irrespective of your age. You will have good days and bad days, but changes in energy levels should settle down as you recover. You should plan your activities for the times of day when you have most energy. You might also want to move things around at home, so that the things you need often are close at hand. 64

67 After this period, you will probably be able to return to your previous activities, including work and exercise. Most people will be able to go back to work, go to the gym, and do whatever was normal for them before their transplant. But it is common to have reduced stamina. You might become tired more easily and need to sleep more. For most people this tendency to tiredness will not be disabling. It might not interfere with living a normal life. But you might have to make allowances for loss of stamina and ensure that you get more rest than you might have needed before. For some people, this reduced stamina will be a longer-term problem. Risk of infection and your blood count Be aware of the fact that it will be some time before your blood count is normal again. It will be a long time before your immunity is fully recovered. You will be more susceptible to infection. This doesn t mean that you can t get on with life, and it doesn t mean that you have to avoid others altogether. But there are some common sense steps to take: Freephone Helpline For more information about managing fatigue, please telephone the helpline. Try to avoid being in the middle of crowds, where you are trapped in an enclosed space with other people s germs for example, peak-hour train travel, crowded cinemas or pubs. Take advice about using swimming pools. Have a thermometer at home so you can check your temperature if you feel unwell. Tell your team straightaway if you develop any sign of infection, including cough, fever, unusual discharge, pain when passing urine or diarrhoea. Try to avoid people who have obvious viral infections as far as possible, especially measles, shingles or chickenpox. If you have young children, ask friends and the parents of other children to warn you of any infections going round. 65

68 Pay close attention to your personal hygiene: wash regularly; be diligent about hand-washing after using the toilet and before eating; take good care of your teeth and gums; wash clothes and bedlinen regularly. Make sure your fridge is clean and kept at 5º C or lower. Keep your food preparation surfaces clean and wash your hands before preparing food. Be vigilant if using food that has been defrosted, and ensure that precooked meals are thoroughly heated through. Ask friends or relatives to deal with fish tanks, bird cages and litter trays. Keep your pets clean and free of fleas and avoid facial contact with them. Avoid other people s pets. You will be more at risk of bleeding because your platelets might remain low for some time. You should take care to avoid injury, and should alert your hospital immediately if you have any signs of bleeding: Take care with food preparation and gardening, when injuries to hands are more likely. Ask for advice about sexual intercourse if your platelets are low. Be sure to report bleeding when passing urine, after bowel movements or unusual vaginal bleeding. Report bruising or skin rashes. You might also be anaemic for some time after your discharge from hospital. This will contribute to feeling tired and lethargic. Tell someone if you feel short of breath. It might be possible to treat your anaemia and you could need a transfusion of red cells. Skin care Your skin may be dry and sensitive for many months. Use a moisturiser after bathing and showering, or whenever you feel like it. Use hypoallergenic cosmetics. 66

69 It is very important that you take extra care in the sun from now on. Too much sun might cause chronic GVHD in your skin. If you have GVHD in your skin already, the sun will make it feel worse. You will also be at an increased risk of skin cancers if you are taking ciclosporin. Wear hats, use high-factor sunblock and cover your skin with loose, lightweight clothing. This includes hands and feet and parts that are often neglected. Avoid being outside, especiallly unprotected, at times of day when the sun is hottest, between 11am and 3pm. Ask your team for information about how your treatment might affect your skin and for further advice about long-term skin care. Getting back to normal It will take time for you to recover. It can be 6 12 months before you feel yourself again. The following pages give some information about looking after yourself in the meantime. Diet There is no evidence to suggest that any particular diet will ensure your recovery and prevent relapse of your disease. Most experts would advise that you eat as healthy a diet as possible. There is plenty of evidence to suggest that healthy eating prevents other serious illnesses, and while it won t guarantee prolonged remission, eating a healthy diet can only be a good thing. Exercise Clinical studies have shown that exercise after treatment will help your recovery, give you more energy, and help you to feel better generally. But it is important not to do too much too soon. Freephone Helpline For more information about getting fit after treatment, please telephone our helpline. 67

70 Take things gradually and set yourself achievable goals. Don t expect too much of yourself to start with it can be demoralising to set yourself goals that are impossible to achieve at first. But small amounts of exercise, such as a short walk each day, will make a difference. You should avoid contact and other high-impact sports until your platelet count has returned to normal. This is because you will be at increased risk of bruising and bleeding, and your body will be less able to heal itself. Ask your consultant about this. If you still have a low white cell count, you will be at increased risk of infection. Take advice about using public swimming pools. Avoid injuries to your skin, such as cuts or grazes. You should be able to get back to a regular exercise routine eventually. You might find that you tire more easily. It might take less to make you short of breath. This might not prevent you from exercising, but might mean that you have to make changes to your exercise regime to accommodate the changes that have happened to your body. Sex You can resume sex after your transplant, but be careful if you still have a low blood count. If your platelets are low you will be at increased risk of bruising and bleeding. People are usually advised to avoid sexual activity until the platelet count is high enough. Discuss this with your team at the clinic. You may also be at increased risk of infection, so it will be important to protect yourself from sexually transmitted disease. Condoms will help prevent sexually transmitted infection. You might feel less interested in sex for a while. Don t worry if this happens it is a very common experience. Macmillan produce a booklet about the impact of cancer on relationships and sexuality. You will find their details in the Further Information section at the end of this booklet. 68

71 Loss of interest in sex can be because of many things, including low mood, anxiety, fatigue or sometimes physical changes. Your body image might have changed as a result of your illness and the side effects of treatment, and you may have less confidence in yourself. Serious illness can cause changes in a relationship, and you may both feel that things are not the same as they used to be. Erectile problems and vaginal dryness are not uncommon, it is worth discussing this with your medical team. Try and talk to your partner about what is happening and how you feel at the moment. Of course, you can still show your affection for one another in many ways even if you are not having sex. Try and explore physical intimacy that does not involve having sex. Once you and your partner have had time to adjust to the changes in your life, sexual feelings will usually return. Continue to use contraception if you do not wish to conceive. Talk to your specialist about your fertility. Changes to your sex life may not be permanent, but they may take some time to resolve. Talk about your concerns with your doctor or nurse. If they are unable to help, they may be able to suggest someone who can. You may wish to seek the help of a professional relationship counsellor. You will find further information at the end of this booklet. Travel Be sure to take information about your medical history and treatment should you need help when on holiday. You should be able to travel normally from around 6 months after your transplant, but this will depend on your blood counts and your immunity levels. Generally, people are advised to avoid flying until their platelet count is high enough. Discuss this with your team at the Freephone Helpline For more information about travel insurance, please telephone our helpline. 69

72 clinic. Aircraft can also be a likely place to pick up an infection because you are sitting in close proximity to lots of people, although airlines insist that cabin air is filtered to remove bacteria and viruses. You are likely to find it difficult to arrange travel insurance. Many companies will refuse travel insurance for those who have experienced cancer. Some will cover part of your travel, such as loss of luggage or cancellations by the airline, but will not cover you for medical expenses. If you are travelling within Europe, be sure to carry a European Health Insurance Card, or EHIC, which entitles you to reduced-cost or free healthcare within Europe. Vaccinations Because your immune system has been replaced with the tissue type of your donor, you will need to be revaccinated with all the vaccinations you had before. This will be arranged once your immunity is fully recovered. Ask your clinic about this, and ask about the current recommendations for having the flu vaccination. There are some types of vaccination that are not recommended after lymphoma treatment. These are live vaccines that use a weakened form of the organism that causes the infection. The organism stimulates the immune system to develop antibodies in the blood, which will protect against the infection. Live vaccines include those for measles, mumps, rubella, tuberculosis and yellow fever. Travel to some destinations will require vaccination. Travel companies will provide information about vaccinations for a particular place. Talk to your clinic about this and ask what will be safe for you. Work Return to work will depend on your rate of recovery. It will be important not to rush back before you feel ready. Freephone Helpline For more information about work and cancer, please telephone our helpline. 70

73 Most people wait at least 6 months before returning to work. You may want to consider a gradual return to work, and go back part-time to start with. You may want to consider reducing your working hours if possible. Talk about returning to work with your doctor and those close to you. Discuss it with your employer. Your feelings It is a rare person that gets through lymphoma treatment without any emotional difficulty. Psychologists recognise that people who survive cancer have complex and difficult emotional responses to their experience. People who have had cancer are far more likely to experience fear, anxiety and depression than those who have not. You can expect to feel different things at different times. Your feelings might be very strong, sometimes overwhelming, making it hard to think about anything else or get on with day-to-day life. If you are having difficult feelings, you are not alone. You are not going mad. The feelings you are having are normal for someone in your situation they are a natural psychological response to a traumatic and frightening experience. You should allow yourself to experience difficult emotions. It does not mean you are weak and it does not mean you are not coping. Freephone Helpline If you would like to talk to someone about your feelings, or you would like to be put in touch with one of our buddies, please telephone our helpline. There are ways to deal with difficult feelings, including talking to others who have been through a similar experience. Some people find message boards and chatrooms very helpful. You can also talk by phone to one of the Lymphoma Association s buddies. If you feel you may be depressed, you should seek professional help. 71

74 Summary Going home means the beginning of the next phase of your treatment. You may feel a bit scared about going home, and so might those close to you. You are likely to feel tired, weak and unwell to start with. It will take a long time for you to gradually get back to normal. Initial follow-up will concentrate on the effects of your transplant your new immune cells and the risk of graft-versus-host disease. You will be at risk of infection and this will be monitored and treated if necessary. You are likely to need admission to hospital for treatment of complications during the follow-up period. Your team will make continued adjustments to your medication during the follow-up period, depending on your blood count, GVHD and risk of infection. Long-term follow-up will deal with the impact on your lymphoma, and the long-term side effects of your treatment. You will be monitored for chronic GVHD. You will remain at risk of infection for a long time. Take care with food storage and preparation, take care with personal hygiene, and try to avoid others with infections. Get a thermometer and be sure to contact the transplant team straightaway if you have any sign of infection. Be sure to contact your team if you have any troubling symptoms, such as signs of chronic GVHD. These include changes to your skin colour and texture, sore or dry mouth, sore or dry eyes, weight loss and diarrhoea. 72

75 You are likely to experience unusual tiredness or fatigue for some months after your treatment. Regular gentle exercise can help with fatigue. It will take time to get back to normal. Don t rush things. Gradually increase your activities and workload. Take good care of your diet and build up a regular exercise routine. Take advice about travel and vaccinations. You are likely to have mixed feelings and you might find you feel low some of the time. Expect to have good days and bad days. Talk to others about how you feel. If you think you might be depressed, or if those close to you are worried about your mood, ask for help. 73

76 Further information Anthony Nolan promotes and facilitates bone marrow donation and carries out research. Maintains one of the world s largest bone marrow registers. Provides information about becoming a donor. Units 2 3, Heathgate Place Agincourt Road London NW3 2NU ) * [email protected]. Carers UK provides free and confidential information and support for carers. Local and regional centres across the UK. 20 Great Dover Street London SE1 4LX ) * [email protected] Depression Alliance provides information about depression and support services. Local groups across the UK. 212 Spitfire Studios Collier Street London N1 9BE ) (information pack request line, not a helpline) * [email protected] Leukaemia Care provides care and support services to all those affected by leukaemia and allied blood disorders. One Birch Court Blackpole East Worcester WR3 8SG ) * [email protected] 74

77 Leukaemia and Lymphoma Research formerly the Leukaemia Research Fund, Leukaemia and Lymphoma Research funds research into the causes and treatment of leukaemia, lymphoma and related diseases. Provide a range of publications, including one called Bone Marrow and Stem Cell Transplantation (BMT) for children and adults. Leukaemia and Lymphoma Research Eagle Street London WC1R 4TH ) * [email protected] For clinical advice ) or * [email protected] Macmillan Cancer Support provides practical and financial support to those affected by cancer. They also provide funding for cancer health professionals. Macmillan can also provide information about cancer. Macmillan s wide range of publications includes Understanding Allogeneic (donor) Stem Cell Transplants (June 2009). 89 Albert Embankment London SE1 7UQ ) * via website 75

78 The following organisations provide information about healthy eating: The British Nutrition Foundation NHS choices The following organisations provide information about benefits, work and financial advice: Macmillan Cancer Support provides information and literature on work and finances. See the listing above for contact details. Citizen s Advice Bureau provides information on a wide range of social and legal issues. Check your local telephone directory for your nearest branch, or visit Benefits Enquiry Line provides confidential advice and information for people with disabilities, their carers and representatives, about social security benefits and how to claim them. ) Department of Work and Pensions provides links to other websites dealing with benefits and allowances and other sources of information. Disability Law Service offers legal advice to those who believe they have experienced discrimination in the workplace as a result of illness or disability Cavell Street Whitechapel London E1 2BP * [email protected] National Debtline provides free and confidential advice on dealing with debt. National Debtline Tricorn House Hagley Road Edgbaston Birmingham B16 8TP )

79 Selected references Gerwitz AM, et al. (eds) Haematology 2007: American Society of Haematology Education Programme Book American Society of Haematology. Marcus R, et al. (eds) Lymphoma: pathology, diagnosis and treatment Cambridge University Press, Cambridge. Thomson KJ, et al. Favorable long-term survival after reducedintensity allogeneic transplantation for multiple-relapse aggressive non-hodgkin s lymphoma. J Clin Oncol, : Brice P. Managing relapsed and refractory Hodgkin lymphoma. Br J Haematol, : Peggs KS, et al. Allogeneic transplantation for Hodgkin lymphoma. Br J Haematol, : Deimling GT, et al. Cancer-related health worries and psychological distress among older adult long-term cancer survivors. Psychooncology, : Kim I, et al. Comparative outcomes of reduced intensity and myeloablative allogeneic hematopoetic stem cell transplantation in patients under 50 with hematologic malignancies. Clin Transplant, : Peggs KS, et al. The role of allogeneic transplantation in non- Hodgkin s lymphoma. Br J Haematol, : El-Banna MM, et al. Fatique and depression in patients with lymphoma undergoing autologous peripheral blood stem cell transplantation. Oncol Nurs Forum, : Mock V, et al. Fatigue and quality of life outcomes of exercise during cancer treatment. Cancer Pract, :

80 Glossary Allogeneic Allograft Anaemia Anaesthetic Antibody Autologous Autograft Alopecia Bacteria Biopsy Blood count Bone marrow Central line Chronic CMV Conditioning CT/CAT scan Day zero the use of someone else s tissue a transplant using matched donated tissue shortage of red blood cells in the blood drugs given to make a part of the body numb (a local anaesthetic) or the whole body numb (a general anaesthetic) a protein that kills off disease-causing cells or organisms such as bacteria the use of a person s own tissue a transplant using the person s own tissue loss of hair small organisms, some of which can cause disease a test which takes some cells to be looked at under a microscope a blood test that counts the different types of cells in your blood. This includes the red blood cells, the different types of white blood cells, and platelets spongy material at the centre of long bones which produces the body s blood cells a flexible tube which is inserted into a large vein in the chest; to allow chemotherapy to be given and blood to be taken through the one line something that is long term and doesn t go away completely cytomegalovirus (CMV) is a common virus that is part of the herpes group of viruses, which can also cause cold sores refers to the chemotherapy or irradiation given immediately prior to a transplant stands for computed tomography or computed axial tomography A test that gives a layered picture of the inside of the body the day the transplant of the donor stem cells takes place 78

81 Engraftment Fine needle Fungus G-CSF GVHD Haematologist Histology Immune system Intravenous Lymph Lymphatic vessels Lymph node Lymphoedema Monoclonal MRI MUGA scan Neutropenia Oncologist Pathologist PCP the process of engrafted stem cells reproducing new cells a test that takes some cells from a lump using an aspiration needle and syringe a type of organism that can cause disease G-CSF is a special type of protien called a growth factor. It stimulates the bone marrow to make white blood cells Graft-versus-host disease (GVHD) is a complication which can occur after a donor stem cell transplant a doctor specialising in diseases of the blood and blood cells the study and description of diseased cells the parts of the body that fight off and prevent infection into a vein the straw-coloured fluid that carries material through the lymphatic system the tubes that carry lymph and connect with the lymph nodes gland that forms a sieve in the lymphatic system. Involved in fighting infection swelling caused by a blockage to the lymphatic system treatment that uses a manufactured antibody to fight disease a test using magnetic rays to give a picture of the body. Stands for magnetic resonance imaging a multigated acquisition scan (MUGA scan) is a test to check that your heart is pumping blood properly shortage of neutrophils in the blood. Neutrophils are a type of white blood cell a doctor specialising in the treatment of cancer a person who examines diseased tissues Pneumocystis pneumonia (PCP) is an infection caused by Pneumocystis jiroveci (previously called Pneumocystis carini) 79

82 PET scan a positron-emission tomography (PET) scan is a type of scan which shows how body tissues are working as well as what they look like Prognosis an estimate of the future course of an individual s illness Radiographer a person who takes X-rays or gives radiotherapy Radiologist a doctor who can interpret X-rays and scans Radiotherapist a doctor who specialises in radiotherapy (sometimes called a clinical oncologist) RIC allograft reduced-intensity conditioning (RIC) is a new way of giving an allograft using relatively low doses of chemotherapy also known as a mini-allograft Spleen a large organ that sits behind the stomach. Involved in the immune system, also removes worn out red blood cells Stem cells immature cells; the precursers of different types of mature cells in the blood Subcutaneous underneath the skin Thrombocytopenia shortage of platelets in the blood. Platelets help to stop bleeding Tissue typing is a group of procedures that determines the type of histocompatibility antigens on a person s cells or tissues. Total body irradiation a form of radiotherapy for patients about to undergo a donor stem cell transplant Transplant coordinator an experienced healthcare professional with particular knowledge of stem cell transplants Tumour markers chemicals produced by tumour cells Virus a tiny organism that causes disease. Unlike bacteria, viruses are not made up of cells VOD veno-occlusive disease (VOD) is a complication of a donor stem cell transplant. It is a condition in which some of the small veins of the liver are blocked 80

83 The Lymphoma Association provides: freephone helpline emotional support for those affected by lymphoma information about lymphomas and their treatments a buddy scheme which links individuals to others with similar experiences of lymphoma quarterly newsletter network of support groups across the UK national and regional patient conferences interactive website with messageboard and chatroom support for haematology and oncology nurses including the provision of study days development and support of lymphoma nurse specialist posts across the UK. Author Catriona Gilmour Hamilton

84 Freephone Helpline Helpline open 9am 6pm Monday Thursday, 9am 5pm Friday Lymphoma Association PO Box 386, Aylesbury Bucks HP20 2GA Administration Production costs for these patient education materials were supported by Roche Products Limited All of the Lymphoma Association s publications are free of charge Lymphoma Association All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, or recording in any information storage or retrieval system without permission in writing from the Lymphoma Association. Registered charity no Second edition February 2011 ISBN Next revision due February 2013