After a suitable donor has been found and everything has been checked by your medical team, your stem cell transplant can go ahead.
Your treatment will begin in hospital with a course of conditioning therapy, which prepares your body for your new stem cells.
After the transplant you will need to spend a few weeks in hospital while you recover. It’s very hard to say how long you will be in hospital for as everyone’s situation is different, but it will probably be around six to eight weeks.
If you have any questions or concerns about what is happening at any stage, you can talk to your transplant team. They will be happy to talk through the process with you and help put your mind at ease. There will be a lot of complex information to take in, so don’t worry about asking for something to be explained twice if you haven’t fully understood.
This section focuses on your time in hospital and has detailed information on the different stages of your treatment. There’s also advice on looking after your mental health during what can be a very challenging time.
Before your stem cell transplant can happen, you will need to stay in hospital and have a course of treatment known as conditioning therapy. This will last around a week and consist of chemotherapy and possibly radiotherapy, too.
The chemotherapy could be given as a tablet, but will more likely be delivered as a liquid through your central venous catheter (CVC), also known as your central line.
If you have radiotherapy, it will be given at your hospital by a radiographer. This will remove any abnormal cells that are causing your condition, and prepare your bone marrow so it can receive your new stem cells.
There are two different types of conditioning therapy: full intensity (or myeloablative) and reduced intensity conditioning (RIC). Your consultant will consider many factors when deciding the best option for you, including your age, general health and the type of blood cancer or blood disorder you have.
This will be used if your consultant feels you are fit and well enough to cope with the side effects it can cause. As a result, it’s used more with younger patients and will definitely be used if you have an autologous transplant. It’s strong enough to remove all your existing blood stem cells. This is why your donor’s stem cells need to be added to your blood as soon as treatment has finished, so that they can rebuild your immune system as soon as possible.
Cyclophosphamide and busulfan are two of the most commonly used chemotherapy drugs for full intensity conditioning. However, new treatments are constantly being developed so you may hear your medical team talking about other types of drugs too.
This type of conditioning therapy is an alternative for patients who are not fit enough to have full intensity conditioning treatment.
RIC is often given alongside drugs that suppress your immune system because it’s not strong enough to completely remove all your blood stem cells. This means that after your transplant, there will be a mixture of your own and your donor’s stem cells in your blood. We call this a chimerism, and the closer it is to 100% donor, the better. Your chimerism will be monitored by your doctor regularly to make sure that everything is ok. You may be given a donor lymphocyte infusion (DLI) to boost your immune system and ‘top up’ your chimerism.
Unfortunately, there is a higher chance of developing complications or relapsing after transplant with RIC. However, it allows many patients to receive a potentially lifesaving (or life-prolonging) stem cell transplant that wouldn’t have otherwise been possible. It’s often used when older patients need a transplant, particularly for treating acute myeloid leukaemia (AML) and myelodysplastic syndrome (MDS).
Transplant day normally happens the day after your conditioning therapy finishes. People often call it ‘day zero’.
To start with, your nurse will check your pulse, blood pressure and temperature. They will also give you an anti-histamine and a small dose of steroids via your central line. This will help to stop any allergic reaction during the infusion of your new stem cells.
The cells will be passed as a fluid through your central line in the same way as a blood transfusion. This can take between 30 minutes and a few hours.
The transplant isn’t painful and you’ll be awake the whole time. When the infusion has finished your nurse will flush your line through with saline to keep it clean. You’ll have your blood pressure, pulse and temperature checked again, and then the transplant is complete.
People have different experiences of transplant day. For some it’s a celebration of a new beginning, a second birthday. For others it’s a bit of an anti-climax because something so important is over so quickly and simply.
You will take a number of different medications to help you through your transplant and during your recovery. They may come in tablet form but some will be delivered through your central line too.
These drugs will often have strange sounding names and it can be difficult to remember why each one is needed but, in general, it will be for one of five reasons:
After the transplant, your new stem cells travel in your bloodstream to your bone marrow. Once there, they attach themselves and start to produce new blood cells that will form your new immune system. This is called engraftment.
Engraftment normally takes around two to three weeks, but it can sometimes take longer. The first sign of engraftment is often an increase in your white blood cell count. Your medical team will test your blood regularly so they know when it has started and that they are steadily increasing.
During this time, you might need blood and platelet transfusions a few times a week. This is to help ‘top up’ your red blood cells, which may also be low. It’s a normal part of recovery and doesn’t mean that your transplant isn’t working. However, if you do have concerns, you should talk to your medical team about it.
You will be placed into protective isolation on the day of your stem cell transplant, if not before. If you have a blood cancer you may have experienced protective isolation after you had chemotherapy. Although the set-up and rules can vary between hospitals, the overall purpose is to keep you in a germ-free environment while your blood cell counts are low.
You will be in your own room, where you will spend most of your time. It will have a bed, sink, shower and toilet, as well as an emergency button in case you need immediate help. There will probably be a filter system to keep the air clean and sterile, and the door and windows will be kept closed at all times.
Your bedding will be changed and your room cleaned daily. Your personal possessions will also need to be wiped clean on a regular basis. These measures kill germs and reduce your risk of getting an infection. All medical staff and visitors will have to clean their hands with alcohol wash when entering your room. They may also have to wear protective clothing.
In the first few weeks you will be put on a ‘low bacteria’ diet that’s similar to diets recommended to pregnant women. It will not include foods that are rich in bacteria (such as soft cheeses or yoghurts) that could cause infection.
Many of our patients recommend getting into a daily routine during your stay. It doesn’t have to be anything complex, but giving structure and meaning to your day can make the situation feel more normal. Making the effort to get out of bed, showered and into fresh clothes can make a huge difference to how you feel. However, on days when this is difficult, you should still try to get out of bed at mealtimes at least.
Anything that you can bring into the hospital to keep you entertained will really help pass the time. You could lose yourself in your favourite film or set up membership to a media streaming service. Listening to music, podcasts or audiobooks is another option, especially if you don’t feel up to reading just yet.
Your smartphone or other similar device is the simplest way to keep in contact with the outside world, whether it’s catching up with friends and family on social media or reading about world events. Find out if your hospital offers free Wi-Fi and check on the 4G coverage/data usage of your phone contract.
Although it might be difficult, focusing on your creative side can be a very enjoyable experience during isolation. It can allow you to express your emotions in ways that might otherwise be difficult to put into words. Often, you might not have the energy to concentrate but if you bring in what you need for your favourite hobby you can give it a try if you feel up to it.
There will be times when you don’t have the energy to concentrate on some of the things you enjoy doing. Try to not worry about it – some days will be harder than others. It’s OK if all you feel like doing is watching TV on a bad day – but you should also take advantage of the good days and do something you really enjoy.
You might not feel like doing much at all, but even a small amount of activity can help reduce fatigue and improve your physical strength. Moving around in your room will also stop you feeling stiff. Ask to speak to a physiotherapist so they can give you some specific advice about exercises you can do safely during your recovery. This will probably be a series of low impact stretches and yoga poses. You might also be given some simple breathing techniques to do daily. This will reduce the chance of you developing a chest infection.
It can be difficult to sleep in unfamiliar surroundings, and your sleep will be disrupted by your medical team checking on your progress every four hours. However, it’s still a good idea to keep your curtains open and let natural light in during the day. It will keep your day/night cycle in sync, so you are more awake during the day and ready to sleep at night.
Keeping in touch with loved ones
Most hospitals will let you select two or three people who can enter your room and be with you for most of your time in isolation.
They will also be able to bring things in from home that you may have forgotten, or that you decide you need during your stay. Other friends and family will be able to come and see you – they may or may not be allowed into your room but can talk to you through an intercom or your mobile phones.
However, it’s perfectly normal if there are times when you don’t feel like seeing visitors. Try to not feel guilty about letting someone else down. Your wellbeing is the most important thing to you and they will understand that you have to put your recovery first.
The potential risk of infection from seeing friends and family can be a source of worry and anxiety for many patients. This shouldn’t be a problem if they are honest about how they are feeling and follow the rules the unit has for infection control. However, if you have concerns, you shouldn’t be afraid of being cautious and challenge them if you feel you have to.
By writing an online blog or using social media, you can connect with your wider circle of friends and family and update everyone on your progress easily in one go. You may find it very therapeutic to write about your experiences, both good and bad. Alternatively, you could ask a few people close to you to update your friends and family on your behalf. This allows you to keep in touch with everyone but removes the pressure of having to re-tell the same story repeatedly, which can become draining.
Unfortunately, most isolation wards don’t allow children into the patient rooms. This is because of the infections that children might be carrying from mixing with others at their nursery or school. However, they might have the chance to see you and talk to you through an intercom. Video calling can also be a good alternative, enabling you to see your children face-to-face every day.
During the first few weeks of your recovery, while you are still in hospital, you’re likely to experience some side effects from your treatment. Most of these early problems come from the chemotherapy and/or radiotherapy you had before your transplant but other concerns, such as GvHD, could also develop. Your medical team will be monitoring you every day and will treat any of the following side effects you might have:
It’s common to feel sick and be sick after your transplant because of your treatment, medication, a possible infection or GvHD. Nausea normally only lasts a week or two for most people. If you struggle with nausea for longer, talk to your transplant team because they might need to change your medication.
Possible treatments – Anti-emetic drugs stop you feeling nauseous. They may be given as tablets, through your central line or as a patch on your skin.
What might help – It’s important to replace lost fluids and stay hydrated. Isotonic drinks or sachets of oral rehydration salts replace lost salts and sugars (electrolytes) that your cells need to stay healthy.
As with nausea, diarrhoea can have many different causes (including GvHD). If diarrhoea occurs for a long time, it can affect how you absorb vitamins and minerals from food, which can lead to weight loss. It’s important to tell your doctor or nurse if you are having diarrhoea.
Possible treatments – Anti-diarrhoeal medication can help but your medical team will be keen to identify the cause of the problem. They might suggest changes to your diet, eating habits or medications.
What might help – Eating plain foods that are easier to digest and keeping hydrated with plenty of fluids.
Chemotherapy damages the cells in the mucosal lining of your mouth. The skin can break down, which can cause painful ulcers to form inside your mouth and throat.
Ulcers may also form further down your digestive tract, which can cause discomfort and make it difficult to eat certain foods. This normally occurs about a week after treatment and will clear up in a week or two.
Possible treatments – Painkillers and sprays or gels that keep your mouth moist. If you find regular painkillers are not working well enough, your doctor might recommend a continuous infusion of a strong painkiller, such as morphine, given through a small pump into the tissue just under the skin. You will also be encouraged to practise good oral hygiene and use mouthwash. A toothbrush with softer bristles could be more suitable if you have sore gums.
What might help – It will probably be easier to eat softer foods like mashed potato and soup. Ice lollies can help to numb any gum pain and are a good way of taking on extra fluid.
Food can often taste different after chemotherapy and you might find that you don’t have the same appetite for food as you did before. If you also experience prolonged sickness and diarrhoea, it could stop you getting the nutrients and energy needed for your recovery.
Possible treatments – Your weight will be monitored by your medical team regularly. You may see a dietician who can advise on how to increase your nutritional intake and give you supplement drinks or soups. However, if problems persist, you may need to be fed via a feeding tube. There are two possible types that provide nutrition in slightly different ways.
– Enteral nutrition – When nutrition is passed through a small tube directly into your stomach. This will most likely be a nasogastric tube, inserted through your nose and down your throat. It will probably stay in for a few weeks or until your condition improves. These tubes help patients who have sore mouths or find swallowing difficult.
– Parenteral nutrition – When nutrition is delivered directly into your bloodstream through your central line. It will be administered by your nurse and then your line will be cleaned to reduce the risk of infection. This option is often used if you experience severe GvHD in your digestive tract or if it’s very difficult to keep any food or drink down.
What might help – Try changing your eating habits or the types of food you eat. Eating smaller amounts of plain foods more often and drinking flavoured water could be an easier option.
When we talk about fatigue, we don’t just mean feeling tired after hard work. Fatigue is when you find it difficult to concentrate and have no energy, even after lots of rest and a good night’s sleep.
Fatigue can be a short-term effect of your treatment that improves after a few months, but some patients experience it more than a year after their transplant. As surprising as it sounds, gentle exercise has been shown to help reduce treatment-related fatigue and improve your strength and energy levels. You will really feel the benefit of doing something, no matter how small.
Possible treatments – Your hospital’s physiotherapist can set up a programme of lite exercises and stretches for you to do daily.
In the few weeks after your transplant, your new immune system is still developing. This means that there is a greater risk of picking up an infection. Your medical team will look out for the early signs of an infection, such as a raised temperature, so that you are treated as soon as possible.
Possible treatments – You will be given a course of antibiotics, anti-fungal or anti-viral drugs depending on the cause of your infection.
What might help – The protective isolation ward you are staying in will have measures in place to reduce the risk of infection. This includes air filters, alcohol gel hand washes, daily bedding changes and regular cleaning.
Some patients develop other complications such as liver and kidney problems.
During your stay in protective isolation you will have lots of spare time on your hands. Many of our patients talk about how much of an emotionally sapping and lonely experience it can be.
It’s easy to have negative thoughts about your situation and become anxious about an uncertain future. Although it’s perfectly normal to have these thoughts, they could turn into something more serious, especially if you’re not able to see the people you love as often as you need.
In simple terms, a ‘coping mechanism’ is anything you do to feel less stressed. They can help relieve stress, help you relax or control your emotions. Different things will work for different people in different situations, so we can’t say what will work for you, but here are a few suggestions:
– Take a deep breath – it sounds simple but it can really calm your nerves.
– Mindfulness – this meditation-based approach can help you to stay calm and focus on the present, rather than worry about the future. Mobile apps such as Headspace can be downloaded to your phone or tablet and act as a good introduction. They can provide you with daily meditation programs that take around 10 minutes to complete and focus on a wide range of different topics.
– Discovery – Give your mind a different topic to focus on, other than your health. You might want to learn about something new that interests you, such as a period in history or a famous person.
– Have a laugh – everybody has something that always makes them laugh, so take your favourite comedies with you or ask your friends for their recommendations.
– Find out more – if you are unsure about anything to do with your transplant or recovery, talk to your medical team, they will be able to put your mind at ease.
A time may come when you feel you need extra support to help you cope. It’s not always easy to identify when you might need this, especially if you are feeling low. If you start to experience some of the following, you should talk to your medical team about it:
you’ve been feeling very low for two weeks or more
you can’t find the motivation to do anything, even important tasks
you feel unable to control your thoughts
you’re feeling much more anxious than usual.
If you would like to talk to a counsellor or try a talking therapy, your transplant team will be able to refer you. If you have never used this kind of therapy before, it can seem a little strange at first – but hopefully it will make you feel more positive about your situation.
Writing about your experience can be helpful in your recovery. Whether it’s blogging, tweeting or posting updates on Facebook, you can let people know what it’s like to have a transplant, and raise awareness of how important stem cell donation really is.
If you decide you want to share your experience online, follow our simple guide: