Life after a stem cell transplant comes with its own set of challenges, and leaving hospital for the first time can be both a happy but daunting experience. Some people find their recovery is relatively straightforward, but for others it can be very difficult and demanding.
Your recovery is likely to affect many aspects of your life, which is why we have sorted our information on recovery into three sections: Body, Mind and Life.
Every person’s recovery is unique and these pages are here to help and support you throughout this journey.
The Body section focuses on everything to do with the physical side of your recovery – from the weekly check-ups you will need once you leave hospital, to possible late effects that might happen years after your transplant. You can learn about how to manage fatigue, infections and other possible transplant side effects. It also looks at Graft vs Host Disease (GvHD), why it happens, how it can affect different organs at different times and possible treatments.
Many early side effects of your stem cell transplant will improve naturally, or with medication, over the space of a few weeks or months. This normally happens during your hospital stay.
However, there are other side effects that could develop a little later or persist for longer. These longer-term side effects are one of the main reasons why you will be regularly monitored by your medical team while you recover. They are often caused by changes in your medication, how well your new immune system is developing, and Graft vs Host Disease.
Knowing more about the possible symptoms will allow you to get help, if and when they start to develop. This might seem a bit overwhelming, but don’t forget that these are potential side effects – it doesn’t mean that you will get all of them. Your transplant team will be close by to treat and support you.
These side effects are different to the late effects of transplant that might happen many years later.
This section covers the following topics:
If you have been having problems with nausea, sickness or diarrhoea, it could mean that you aren’t receiving enough nutrition from your food. For some people, these symptoms improve after a few weeks but some people have to deal with them for longer. If this happens for a long time, it can lead to weight loss, make you feel more fatigued and affect your long-term recovery.
There are many options you and your medical team can try to control these problems, including medication, changes to your diet and changes to your eating behaviour.
Many patients will have to deal with a certain level of pain during their recovery. It can happen in different parts of your body including your nerves, bones, joints and other organs.
Coping with pain can be physically and emotionally draining, which could slow down your overall recovery, so it’s important to report any pain to your medical team quickly. They are likely to offer you pain relief treatment but they may also discuss other techniques with you, such as meditation or mindfulness, so that you are better equipped to cope with your situation.
If the pain gets more intense, you may be referred to a palliative care team. It’s a common misconception that palliative care is the same as end of life care, but your referral doesn’t mean that your transplant is failing. Palliative specialists are experts in managing pain and will be able to make you feel more comfortable.
You might experience new bruising or bleeding at times, including a persistent nosebleed or blood in your urine or poo.
There can be many possible reasons for bleeding, so contact your medical team immediately and they will investigate the problem.
One of the most common reasons for bleeding is that your platelet count is low, so it’s harder for your blood to clot. Your hospital will be able to arrange a platelet transfusion for you. This treatment is very similar to a blood transfusion.
After your transplant, the combination of different side effects will probably leave you feeling very weak and you are likely to have lost some of your muscle strength.
Long term steroid treatment for GvHD will also cause your muscles to weaken.
Regular physiotherapy and light exercises, such as walking or yoga, will help rebuild your strength and stamina, and improve your balance.
Some patients will also experience numbness or tingly sensations in their hands and feet. This happens because nerves can be damaged by chemotherapy given during conditioning therapy. It can make tasks like walking or exercising more difficult but it usually improves over time, and physiotherapy will help.
Your kidneys filter out waste from your blood that is then removed from your body in urine. They also help to keep the balance of important substances in your body, like salt and water.
Mild kidney problems are common after a stem cell transplant, so your medical team will test your kidney function in your check-ups. Problems can be caused by your medication, an infection or simple dehydration. Your medication may need to be changed or you could be put on a drip to give you extra fluids.
Long term kidney problems can also happen, but they are less common. You may need to go back into hospital for treatments including dialysis – when your blood passes through a machine to filter and clean your blood.
The most common problem to affect your liver after transplant is called hepatic veno-occlusive disease (VOD) or sinusoidal obstruction syndrome (SOS). It’s caused by conditioning therapy that damages the cells of your liver, and it’s likely to happen in the first few weeks after your transplant. Patients that had high doses of chemotherapy have a higher risk of developing VOD.
It can cause abdominal pain and swelling, jaundice (when your skin looks yellow), sickness and fatigue. Often, these symptoms are mild and disappear quickly, so you might not even know you have it. However, things could get worse quickly – so talk to your medical team if you start to have any new symptoms. Your medical team will check your liver function regularly and may need to change your medication from time to time.
Thrombotic thrombocytopenic purpura (TTP) is a rare condition that affects about 1 in 20 patients. It causes small clots to form in your blood following your transplant. This means you have less platelets available to do their normal job of helping your blood to clot following an injury. TTP can cause fever or headaches, and you might find that you bruise easily. It has been linked to certain medications, so your medical team may need to review the drugs you are taking.
The side effects of your stem cell transplant can make the act of having sex uncomfortable and even painful. Many patients also have concerns about how their body has changed, which in turn affects their confidence. Our sex and relationships section has more information on this topic, as well as support and advice.
When we talk about fatigue, we don’t just mean feeling tired after working hard. Fatigue is when you find it difficult to concentrate and have no energy, even after lots of rest and a good night’s sleep. It can make you feel both physically and mentally drained, leaving you with very little motivation and it can be hard to concentrate, even on simple things.
Fatigue can be a short-term effect that improves after a few months, but some patients still experience it more than a year after their transplant. It’s often the result of many factors, such as:
There may be times in your recovery when fatigue is unavoidable, but it’s still possible to manage your situation and make the best of the energy you have.
There are four main ways you can help reduce the effects of fatigue:
Many patients find that their energy levels go through highs and lows during the day. It’s very easy to overdo it when you get up in the morning and feel full of energy, only to need a nap in the afternoon. If you get into the habit of listening to your body and know how you are likely to react to certain activities, it will become easier to manage your fatigue.
Plan ahead – Make a list of the things you want to do each day. Even if you are having a really bad day, try to do at least one thing. It can be really difficult, but achieving something will make you feel more positive and may lift your mood.
Little and often – Break down your tasks into small and manageable goals and make sure you get some rest in between. This will help top up your energy levels regularly and reduce the risk of becoming exhausted.
Keep a diary – Make a note of the times you feel better or worse. This will help you to spot patterns and make changes to your routine that could help.
Exercise may feel like the last thing you want to do, but it can help reduce fatigue and improve physical strength. You will find that your fitness, endurance and muscle strength will have reduced during your treatment. Keeping active and slowly building up towards structured exercise will be an important part of your recovery.
Find something that you enjoy, such as walking, swimming or yoga. If you have a favourite sport, it might be time to start playing again, or you could try something completely new.
If you are really struggling with fatigue, or having a particularly bad day, these activities may not be suitable. Sometimes even the smallest physical activity can be a real challenge, but it’s important to still do something.
Improving the quality and amount of sleep you get each night will give you more energy and help your recovery. However, you might find it difficult to sleep for a variety of reasons. If you can record your sleep patterns using a wearable fitness tracking device, or make a note of the hours you sleep, you can look back on when these problems occur. This will help your medical team spot patterns and work out how they can help.
If you are struggling to get a good night’s sleep, you might find the following suggestions helpful:
– Avoid alcohol, caffeine and nicotine for four hours before sleep.
– Don’t use devices with an electronic screen in the hour before bed.
– Write down anything that’s worrying you before going to sleep.
– Start a relaxing pre-sleep routine, such as reading a book.
– Stick to a regular sleeping pattern – your body’s natural sleep cycle will be more settled.
– Create a calm, dark and cool sleeping environment.
– Limit your daytime naps – it will help you feel more tired at the end of the day.
– Only go to bed if you feel truly tired – if sleep doesn’t come, try to do something relaxing like reading or listening to podcasts.
Even simple day-to-day tasks can be difficult for someone with fatigue, but having a strong support network around you will help relieve the burden.
Relatives and close friends might be able to help around the house, especially with jobs like emptying the bins that could be an infection risk. They may also be able to help with childcare from time to time, so that you can get some rest.
Other tasks, such as your weekly shopping, can be done online and delivered to your door so you don’t have to worry about filling a trolley at the supermarket.
If you can afford it, paying for a cleaner would also free up your time to focus on your recovery.
One of the big challenges surrounding fatigue can be explaining it to those around you. Your friends, family and work colleagues may think that now you’ve had a transplant, you’re better and can get on with life as normal. But really, you’re still recovering.
Depending on your situation, you might have to return to work while still managing your fatigue. This can be a challenging time but if you make your employer aware of your situation, they should be able to put a plan in place to help you.
You’ll be at an increased risk of getting an infection as your immune system recovers, which can take up to a year or longer. Infections are caused by viruses, bacteria and fungi. They can happen anywhere in your body but the most common ones are likely to be caused by your central venous catheter (CVC), your respiratory system or your gut.
This webpage covers the following topics:
It’s important to spot the signs of an infection as early as possible to stop it becoming too severe. You know your body best and you can tell when something isn’t right, so have the confidence to contact your medical team and get checked out.
If you have any of the following symptoms, it could be a sign of infection:
We’ve all had little niggles that should have been checked out by a doctor or dentist, only for them to be forgotten about in our busy lives. Unfortunately, if problems happen they are unlikely to go away by themselves and will get worse if left untreated.
You should have been given the contact details of a doctor or nurse in your medical team who you can talk to. You can also visit your GP, but if things happen very quickly, you should go straight to A&E. There is a risk of your body’s immune response also causing damage to other parts of your body. This is known as sepsis and if it occurs, you will need immediate medical treatment. This could include intravenous antibodies delivered via a drip directly into your blood stream.
Don’t worry about reporting something that turns out to be a false alarm – nobody will be upset with you. It’s more important that concerns are raised so that if treatment is needed, it can be given as quickly as possible
When you see your medical team, they will run tests to find out the cause of your infection. They will then decide on the most suitable treatment or monitor your symptoms for longer. Your treatment might be given as tablets, through a drip, or a nebuliser – a device that allows medication to be inhaled directly.
There could also be times when you are given antibiotics even though you have no signs of infection. This is a prevention that reduces the risk of an infection starting. It’s often called antibacterial prophylaxis.
Infections are a natural part of recovery that can’t always be avoided. However, there are things you can do to reduce the risk. Although you might have to make a few lifestyle changes, you still need to live your life and enjoy it. Being aware of your situation and making sensible choices, while still being careful, will hopefully allow you to do the things you enjoy doing during your recovery.
General hygiene – Wash your hands or use alcohol gels regularly, especially after using the toilet, handling anything unclean or travelling on public transport.
Contact – Spending time in crowded places and travelling on public transport should be avoided if possible.
Diet – Stick to fresh food that is washed and cooked properly. You also need to avoid food that’s rich in bacteria, such as blue cheese or yoghurts. More information is available in our diet section.
Oral hygiene – Brushing your teeth twice a day, flossing and using mouthwash will help prevent tooth decay and gum disease.
Safe sex – Always practise safe sex by using a condom. You should also avoid any sexual practices that put you at risk of infection.
Pets – Although there are many benefits of caring for your pet during recovery, you will have to be very careful around them too. Always wash your hands after touching them and don’t let them lick or jump all over you. Ideally you should avoid their litter tray/waste completely.
Travel – Avoid travelling to countries or locations where food and water quality aren’t to the highest standards, or where you might encounter tropical diseases. More advice on travelling abroad is available in our travel section.
Vaccinations – During your transplant your immune system is replaced and you will need to have a new course of vaccinations to protect you from common illnesses such as measles and tuberculosis (TB).
Medication – Your medical team may decide to keep you on prophylactic antibiotics to help reduce the risk of infections developing.
Back to work – Some people return to work about six months to a year after transplant. You’re normally at much less risk of infection at this point, but it’s sensible to take precautions if you can. If you have a job where you’re in contact with the general public a lot, see if you can make changes to your role so you’re less exposed.
Healthy lifestyle – Regular exercise, good diet and vitamin supplements will all help to improve and maintain your general health.
GvHD stands for ‘graft versus host disease’. The word ‘graft’ simply means your donor’s cells, and the ‘host’ is you.
When you have a stem cell transplant, your donor’s cells will form your new blood and immune system. Your immune system keeps your body safe from infections caused by bacteria, viruses and fungi that are not part of you. It also scans your body’s own cells and removes any that don’t appear to be ‘normal’, such as those turning into cancer cells.
There are still small differences between your new immune system and other cells in your body after you’ve had a stem cell transplant. As a result, your growing immune system may harm some of the cells in your own body because it sees them as ‘different’. This is called GvHD.
Some GvHD can be a good thing because it means that your new immune system is working and is likely to be attacking any remaining or returning disease. This can be referred to as ‘graft versus leukaemia effect’ or ‘graft versus tumour effect’. However, too much GvHD can cause unwanted complications and side effects. At its worst, GvHD can be life threatening.
GvHD is not yet fully understood and it’s difficult to predict who will get it and who won’t. We know that about half of people who have a transplant will get GvHD. Often, it’s very mild but for some people GvHD can be more severe and can affect their quality of life.
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There are four classes of GvHD:
Once classed, GvHD is then given a grade which is used to guide treatment and to help monitor improvements. Grading is based on symptoms and the number of organs involved. Some transplant centres slightly adapt the grading system they use, so it’s best to check how they measure yours.
GvHD can occur at any time, so it’s important to report any symptoms after transplant to your team. However, the most common times to experience GvHD are:
Some symptoms are quite general and don’t always mean you have GvHD. Your medical team will perform tests that might include biopsies (skin or liver GvHD) or use a small camera to look closely at the organ (stomach or lung GvHD). These tests can confirm the GvHD diagnosis.
Treatment for GvHD varies depending on the organ involved. It can be broken down into:
Local – This includes creams for skin GvHD, drops for eye GvHD and physiotherapy for GvHD of the joints.
Oral – Immunosuppressive medication (cyclosporine, mycophenolate or tacrolimus) will be given before your transplant to suppress your immune system and allow new stem cells to grow. If you develop GvHD, the dose might need to be increased for a while to control your symptoms. Oral steroids may also be used for immunosuppression. Once the GvHD has improved, these medications will slowly be reduced again.
Intravenous – Might be used if oral medications don’t control the GvHD. This might require an admission into hospital for treatment.
In some cases, acute or chronic GvHD cannot be controlled with these medications so further treatment, such as extracorporeal photopheresis (ECP) or referral to a specialist might be needed.
Symptoms: Acute and chronic skin GvHD symptoms are very similar. Your skin is likely to become dry, red and itchy and it could affect multiple areas of your body. This can affect your appearance, ability to regulate your temperature and lead to infection if the skin is broken.
Treatment: Some cases need no treatment and improve naturally. Mild cases are treated using moisturises or steroid cream. Medication to supress your immune system in more severe cases and treatments such as ultraviolet light and extracorporeal photopheresis (ECP) are possible options.
Symptoms: Gut GvHD could affect your mouth, oesophagus (food pipe), stomach and bowel. Acute gut GvHD usually affects the bowel. You could have sickness, diarrhoea, indigestion, cramping feelings and lack of appetite.
Treatment: Mild cases don’t need treatment but dehydration should be avoided by drinking lots of fluids. More severe cases might need anti-diarrhoea medication, painkillers to ease cramps and anti-sickness drugs to stop you feeling sick.
Symptoms: Your mouth may become sore and dry because you aren’t producing enough saliva. This may lead to ulcers forming and can make your food taste unusual.
Treatment: Visit your dentist regularly if you have mouth GvHD. Practising good oral hygiene and using a steroid mouthwash may also help.
Symptoms: To begin with you might not feel anything but your doctor might find out that something is wrong by testing your liver function. If it becomes worse you may become jaundiced, (yellowing of skin) and your skin may itch. Your liver may also swell in size, causing abdominal pain.
Treatment: Steroids and other drugs to suppress your immune system.
Symptoms: Your lungs can lose some of their flexibility and elasticity, making you feel short of breath, wheezy and prone to coughs and chest infections. You might find exercising becomes more difficult. If you experience any of these symptoms you should contact your medical team straight away.
Treatment: Tests such as lung function, chest X-rays, CT scans and sometimes bronchoscopies (a type of endoscopy that looks inside your airways) to find out what’s causing your problems and rule out infection.
Symptoms: Your eyes may become itchy, dry and uncomfortable or they may water almost continuously. They may also be sensitive to bright light.
Treatment: Referral to an ophthalmology specialist that can prescribe a combination of eye drops, anti-inflammatories or antibiotics depending on your symptoms. Wearing sunglasses may also help.
Muscles & joints
Symptoms: Restricted movement and pain in the joints of your arms and legs, making tasks such as driving or climbing stairs more difficult. Some patients experience swollen joints.
Treatment: Physiotherapy can improve your symptoms and will involve doing lots of stretches and keeping your joints mobile.
Symptoms: Women may experience vaginal dryness, narrowing of the vagina and ulceration in advanced cases – causing pain and discomfort during sex.
Men may experience sensitivity or a rash on their penis and it could be uncomfortable to pass urine. They may also experience problems maintaining an erection.
Treatment: Women will be referred to a gynaecologist that may prescribe a steroid cream or gel to combat dryness. Men will be referred to a urologist and may also be prescribed a steroid cream to reduce sensitivity.
ECP is a treatment used for acute and chronic skin, liver and oral GvHD. It aims to destroy the white blood cells that cause GvHD by combining a medication called methoxypsoralen (8-MOP) with ultraviolet (UV) light.
The procedure involves being attached to a machine that removes your blood through a cannula and drip. It then separates the white cells from your blood, before returning the blood to your body. The white blood cells are then exposed to UV light and 8-MOP to destroy the cells that cause GvHD, and returned to your body.
Treatment can take 1–2 hours. You might start by having two appointments per week, every fortnight. Over time (depending on your response) treatment cycles are likely to reduce. ECP for acute GvHD responds quite quickly, whereas ECP for chronic GvHD can take six months or more before any improvement. In some cases, treatment can last 12–18 months or longer.
Referral for ECP can seem daunting, due to the length of treatment. Sometimes patients delay it as long as possible – but the timing of ECP is crucial for it to be most effective. It’s essential that if your doctor suggests a referral for ECP you consider it carefully. Leaving it too long could reduce the effectiveness of the treatment.
Your medical team will continue to check on you regularly to make sure your new immune system is working properly and to monitor any side effects.
Everybody’s recovery is different and some people will need to visit the hospital more often, for much longer into their recovery.
The frequency of these appointments will decrease over time and eventually you will be seen yearly, to check everything is still ok.
After you leave hospital, you will have one or two check-ups with your medical team every week. They will:
If your blood cell or platelet counts are low, your medical team may decide to give you one (or more) blood transfusions. This will be more likely in your early recovery.
Depending on the blood cancer or blood disorder you had, you may need to have irradiated blood. This is donated blood that is treated with radiation before it’s given to you – this removes the white blood cells and reduces the chance of you having a reaction to it. Your medical team will give you a card to carry with you so that doctors know to give you this type of blood in an emergency.
You will probably have regular check-ups at the hospital but they will happen less often. At three months and one year after your transplant you may also have a bone marrow test (where a small bone marrow sample is taken and analysed) or a PET-CT scan. They are both used to monitor your progress and to confirm that your blood cancer or blood disorder has not returned.
Central line removal – Your central line can risk causing infection, so it will be removed as soon as it’s no longer needed, normally a few months after transplant. Removing it is normally done at the outpatient clinic using a local anaesthetic. You may need a stitch or two to help the wound heal.
Hospital stay – Unfortunately you’re likely to have some setbacks in your recovery and you may need to spend some time back in hospital. While your immune system is rebuilding, infections can be picked up very easily. This doesn’t mean that your transplant hasn’t worked – it’s a natural part of your recovery that cannot always be avoided.
No matter how long its been since your transplant, you’ll always have a point of contact, normally your clinical nurse specialist (CNS) or transplant co-ordinator.
You will have a full health assessment after every year. Your medical team will keep an eye on whether you’re experiencing any late effects of transplant.
Vaccinations – During your transplant your immune system is replaced, which means the vaccines you had as a child will no longer work. You will be unable to have any vaccine that’s based on a live virus or bacteria because they are unsuitable for people with a potentially weakened immune system – these include the TB and MMR (measles, mumps and rubella) vaccines.
Your transplant team and GP will schedule and give your new vaccinations to you. For some vaccines this normally happens at least six months after transplant but others are given after two years.
Your family should also consider having the seasonal flu vaccine every year. It can be given through their GP or local pharmacy.
There will be times when you need to have certain treatments or procedures. Some of these are important milestones in your recovery that show you are making good progress. Your medical team will try to arrange them alongside other appointments so that it’s more convenient. However, others will only be needed if problems develop.
Specialist appointments – As well as more general health checks, you may also be referred to specialist doctors, who are experts in one type of treatment or part of the body. This often happens if you have GvHD that affects certain organs. You will also be advised to regularly see other specialists such as a dentist, optician and gynaecologist (if you have a vagina) so if any problems occur, they can be treated early.
Donor Lymphocyte Infusion (DLI) – If your chimerism (the proportion of blood cells that come from your donor compared to your own) is low, you could be given a ‘top-up’ of cells from your donor. This simple procedure is very similar to a blood transfusion.
High dependency – At times you may need specialist care on a high-dependency or intensive care unit (ICU). These units offer essential care, support and close observation if you become very unwell.
It’s ok to feel frightened, down or frustrated when returning to hospital – but it will enable your medical team to give you the best possible treatment and support. You can find out more and access extra support in the Recovery: mind section.
This is general information on donor lymphocyte infusion (DLI). It’s important to remember that everyone is individual, and we would always encourage discussion with your transplant team if you have any questions.
The immune system is made up of different types of white blood cells (WBC) called lymphocytes – these are the cells which fight infection. A DLI is the infusion of lymphocytes, specifically T-cells, from your donor. T-cells are a type of lymphocyte that can cause an immune response. A DLI is used after a sibling or unrelated stem cell transplant.
There are two main reasons why a DLI would be used
After a stem cell transplant, chimerism will be measured on a regular basis. Chimerism tells us how much of your bone marrow is from the donor and should be as near to 100% donor as possible. If the chimerism level is consistently low or drops, it means not enough is from your donor and there is a risk of relapse or graft failure (when your donor’s cells fail to develop and grow properly). A DLI is given to cause an immune response which can push the chimerism back up to an acceptable level.
It’s important to remember:
Relapse after a stem cell transplant can be treated with a DLI. If the relapse is low level and picked up early in a test for minimal residual disease (MRD), the immune response caused by a DLI can fight the disease and help put you into remission. If relapse is picked up on a bone marrow test or in the blood and there is higher level of disease, chemotherapy will be used first followed by a DLI to help put you into remission.
It’s important to remember:
In some cases, if a disease has a higher risk of relapse after transplant, a DLI can be planned in the pre-transplant phase to be given after the transplant. This might be done irrespective of chimerism or relapse but as an extra preventative measure for relapse. This should be discussed with you prior to the transplant.
When the donor’s stem cells are being collected, if there is enough within the collection a DLI can be removed, frozen and stored. Sometimes there isn’t enough, and all the collection must be used for the transplant. In this situation, if you need a DLI, your donor will be contacted and asked to donate.
A DLI is easier to collect than stem cells, injections are not needed as high levels of lymphocytes are always present in the blood and can be easily collected. However, the donor will still need to agree and have a medical before going ahead.
A date will be discussed with you and, in most cases, the DLI can be given as an outpatient. If chemotherapy is given beforehand as an inpatient, then the DLI will also be given while you are an inpatient. The DLI will be thawed and given to you through a syringe as it is given in much smaller volumes than stem cells. The DLI is normally given in increasing doses over a period of weeks or sometimes months, but this and the dose will be determined by your transplant team.
It’s rare to experience side effects whilst receiving a DLI. Occasionally, there is a reaction and a smell from the preservative called ‘DMSO’ which is added when the DLI is frozen. A nurse will be with you throughout the whole infusion and you will be observed for a short time after.
The main side effect is graft versus host disease (GvHD) and this can happen in the weeks following the infusion. Although a side effect, GvHD is the response you want as it suggests the DLI has caused an immune response. The key is to balance GvHD by not causing too much of a reaction, but enough to give the desired effect. Giving the DLI in increasing doses over a period of weeks is a way of controlling the risk.
It’s important to remember:
This will vary depending on the experience of GvHD. Follow up in clinics might increase initially to monitor for symptoms and response, and to decide if another DLI is needed. If the response is achieved and any GvHD resolved, recovery after transplant should continue to be the same as prior to the DLI.
Every patient is different and the decision to give a DLI will be decided by the transplant team. These are just some reasons why a DLI wouldn’t be a treatment choice, but you should always discuss treatment with the transplant consultant.
A second transplant is the best treatment option
A second transplant will only be considered in the case of relapse or graft failure. There are several factors that will decide if this is the best option, such as the level of relapse/graft failure, time from transplant, age and fitness. This will be discussed with you by the transplant team.
You have already had significant acute GvHD
If significant acute GvHD has been experienced, which means the donor cells from the stem cell transplant have caused a good immune response, but the chimerism has still dropped or relapse has occurred, then giving a DLI to try and cause more GvHD is unlikely to work. This should be discussed with the transplant team, as having low levels of acute GvHD could still mean that a DLI is an option.
You have ongoing chronic graft versus host disease (cGvHD) that is still being treated
Giving a DLI when cGvHD is ongoing and being treated can cause a worsening of symptoms and acute GvHD. As above, if GvHD has already been experienced it is unlikely that a DLI would work.
Having a stem cell transplant can have a long-term impact on your health and wellbeing, so you will be invited to yearly check-ups where your progress can be monitored. You may also have access to a ‘late effects’ clinic. These services are run by clinical nurse specialists who are highly experienced in the needs of stem cell transplant recipients.
Some of these side effects are more common than others and some will only affect a small proportion of patients. Many of them happen because of the treatment you needed, either before or after your transplant, including the conditioning therapy. Taking steroids to control your immune system and reduce the effects of GvHD can also cause certain side effects, especially if they need to be taken for a long time.
Reading about these long-term effects can be daunting and a little overwhelming, especially if you are preparing for, or have recently had a stem cell transplant. While it’s important to plan for future challenges, you might decide it’s better to focus on your own stage of recovery for now and consider these potential long-term effects later.
This section provides information on the following late effects, listed from the most to least common. It’s important that you know what to look out for and how your team will monitor, screen for and treat them.