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Allogeneic
stem cell
transplants
Freephone HelplineThe knowledge
to challenge
lymphatic cancers
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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 1068395 Second edition February 2011
ISBN 978-0-9564755-4-1 Next revision due February 2013
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Author Catriona Gilmour Hamilton
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1
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.
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. 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.
1
Freephone Helpline We produce a separate booklet about autologous stem cell transplants.2
3
Important!3
Freephone Helpline
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.
The telephone helpline symbol indicates that you can call our helpline for more information on this subject on 0808 808 5555.
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.
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 OneBefore your transplant
15 First steps 19 Your donor
22 Tests and other preparations
31 Summary
33
2
Part TwoWhile 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
5
57
3
Part ThreeAfter 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
Example of donor transplant pathway
Going home and continuation of treatment
Continued monitoring and management of infection and GVHD
Adjust medication
and treat infections hospital as neededReadmission to
Waiting for engraftment
Close observation and management of side effects Prevention and management of graft-versus-host disease Gradually switch from IV medicines to tablets Preparation Information Arrange
donor cells Tests treatmentPrep
Conditioning
Chemotherapy Possibly total body irradiation
Getting back to normal
Ongoing monitoring Thinking about life in general
Transplant
Infusion of donor cells Weeks – months before transplant 1– 8 days before transplant Day zero 6–12 months onwards 1– 6 months following transplant 1–21 days after transplant
2
1
3
Part When What7 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
Introduction
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.
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.
You will find these subjects discussed in greater detail in Parts Two and Three.
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.
9 Chemotherapy /
radiotherapy
Replacement of faulty marrow and immune system
Graft-versus-lymphoma effect
Control of underlying disease
Donor stem cell transplants should work like this:
+
+
Complications, including GVHD are discussed on pages 37-50.
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 graft-versus-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:
•
reduce the risk of graft-versus-host disease•
prevent graft rejection•
limit the risks of infection but also11 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.
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.
Your care after discharge is discussed in Part Three.
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.
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 graft-versus-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.
15
1
Part One
Before your transplant
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.
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.
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. 17 Freephone Helpline If you would like to talk to someone about having a transplant, please telephone our helpline.
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.
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
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. Remember...
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.”
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
Other practical preparations are discussed on pages 26-30.
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.
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.
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.
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.
You will find CMV discussed in greater detail on pages 48-49.
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 30– 40 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.
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.
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.
Freephone Helpline For more information about central lines, please telephone our helpline.
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 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
You will find more more information about conditioning and total body irradiation on pages 33-35.
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.
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.
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. 27 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. You will find further sources of information about benefits and financial support in the ‘Further Information’ section at the end of this booklet.
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.
29 Things to wear
Things for personal hygiene
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.
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 track-suit 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.
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.
Communication
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.
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 email. 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.
31
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.
2
Part Two
While you are in hospital
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.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 37-43.
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 15–20 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.
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
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.
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.
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
Freephone Helpline
For more information about the blood count, please telephone our helpline.
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.
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.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.
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.
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.
Don’t forget... Freephone Helpline For more information about coping with side effects, please telephone our helpline.
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.
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 short-term 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 Freephone Helpline For more information about mouth care, please telephone our helpline.
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.
“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. Freephone Helpline For more information about coping with hair loss, please telephone our helpline.
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
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 Freephone Helpline For more information about fatigue, please telephone our helpline.
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’.
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.
Chronic DVHD is discussed in on page 63.
