Side effects after a donor stem cell (allogeneic) transplant
The type of side effects you have and how severe they are will depend on the type of conditioning treatment you have.
If you have a reduced intensity transplant, some of these side effects may not occur, or if they do, they’ll be less severe. Your hospital team will give you more information about what to expect.
You’ll have blood samples taken every day to check the numbers of white blood cells, red blood cells and platelets. The numbers of the different types of blood cells will be low for some time, and this can cause different problems.
The number of white blood cells in your blood, and in particular a type of white blood cell called a neutrophil, will be low for a time. When you don’t have enough neutrophils, your risk of infection is increased. This is called neutropenia.
As a result you’ll be at risk of infection, including infection from the bacteria that live on your skin and in your digestive system. These bacteria are normally useful to our bodies, but when the immune system isn’t working as well as usual, they may cause infections. A lot of your care will involve preventing and treating infections.
You’ll be given drugs to prevent and treat infections. Your temperature will be checked regularly, and the nurses and doctors will monitor you closely for signs of infection. They’ll also ask you to let them know if you feel cold and shivery or have a sore throat, cough, pain when passing urine or any other symptoms that could be signs of infection.
The hospital staff will take precautions to protect you from possible sources of infection, but even so, most people develop a high temperature and need antibiotics at some point while their immune system recovers.
The hospital staff will try to make sure you aren’t exposed to any infections from your environment. Your room will be cleaned daily and your sheets changed often. In most hospitals you’ll have a toilet and a shower of your own.
It’s also important to make sure your skin is kept clean. The nurses will give you advice about showering and hand washing, and they can help you if you’re feeling very tired. They’ll also show you how to look after your mouth and keep it clean.
Being careful with food
During your time in hospital, there will be rules about the preparation of food and what you can eat. This is to help you avoid food that contains harmful bacteria. Each hospital will have its own guidelines. The nurses and doctors looking after you will tell you what their rules are. Some general precautions are:
Avoid soft cheeses, pâté and unpasteurised foods.
Don’t eat lightly cooked or uncooked eggs.
Fruit and vegetables (if allowed) need to be thoroughly washed and peeled.
Hot meals should be freshly prepared and thoroughly cooked (not reheated).
Avoid takeaway foods.
Hospital rules on visiting vary. You may be restricted to only a few visitors each day. They’ll have to wash their hands and wear protective clothing so they don’t transfer any infection to you. People who are unwell because of an infection will be told not to visit. Our section on relatives and friends has more details. The nurses will explain what precautions, if any, your visitors have to take.
The number of red blood cells in your blood (your haemoglobin level, or ‘Hb’) may go down. This is known as anaemia and can make you feel tired and short of breath. You may need regular blood transfusions until your body starts to make enough red blood cells again.
For several months after your transplant, any blood (or platelets) you’re given will first be treated with radiation (irradiated) before being given. This is to prevent any problems caused by white blood cells called lymphocytes, which may be in the donated blood. Irradiated blood isn’t radioactive and won’t harm you or anyone you come into contact with.
The numbers of platelets in your blood will be low for a time. You’re likely to need transfusions of platelets (which may also be irradiated) to reduce the risk of bleeding or bruising. The doctors and nurses will examine you regularly for bruises or little red spots on the skin (called petechiae). Let them know straight away if you have a nosebleed, bleeding gums or blood in your stools or urine.
Feeling sick (nausea) and being sick (vomiting)
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You’ll be given anti-sickness drugs (anti-emetics) regularly to reduce or stop nausea and vomiting. There are different anti-sickness drugs, so if one doesn’t work for you there are other drugs your doctor can prescribe.
Chemotherapy and radiotherapy can cause painful mouth ulcers. And while your white blood cell count is low, you’re also at risk of mouth infections including thrush, which is a fungal infection. Keeping your mouth clean is important to prevent infections that can spread to other parts of your body. Use a soft toothbrush when cleaning your teeth to protect your gums.
The nurses will advise you on how to look after your mouth and teeth. You’ll be given mouthwashes and lozenges to suck regularly to try to prevent infections. If your mouth is sore, you’ll be given painkillers.
During treatment, it’s important that you don’t lose too much weight. You’ll be encouraged to try to eat small meals and snacks even if you don’t have much of an appetite or if food tastes different. The nurses will give you advice, and you may also see a dietitian to make sure you’re eating as well as possible.
If you have a sore mouth this can make eating difficult. You may need to have nutritional drinks until you can eat properly again. Occasionally people may be advised to have liquid food through a thin, soft tube that goes down your nose into your stomach (feeding tube).
Some people may need feeding through their central line. As you start to eat again, the amount of food you’re given through the line is gradually reduced.
If you have diarrhoea, you’ll be given medicines to help control this. Let the nurses know if it doesn’t get better or if your bottom gets sore.
This is a common side effect of high-dose chemotherapy. You may also temporarily lose your eyelashes, eyebrows and other body hair. Your hair will grow back once the treatment is finished. We have more useful information and tips on using hats, scarves and wigs to cover up hair loss.
You’ll probably feel extremely tired and spend a lot of time sleeping. Sometimes you may feel too tired to concentrate enough to read or even watch television. At times, you may not feel up to seeing many visitors or seeing them for too long. Let them know how you’re feeling so they don’t disturb you if you want to rest.
Although you’re tired, it’s a good idea to try to do some gentle exercise such as stretching, which you’ll be shown by a physiotherapist. This helps reduce the chances of getting a blood clot, and it keeps your muscles working and toned. Some transplant units may have an exercise bike that you can use when you’re feeling better and your blood counts have improved.
Most side effects are worst when your blood count is at its lowest – usually at the end of the first week and throughout the second week after the donor stem cell transplant. When your blood count goes up, the side effects will start to improve. You’ll be at less risk of infection and won’t need so many blood transfusions and platelet transfusions. Your appetite will improve, and you’ll start to feel better.
When the numbers of your blood cells have reached a safe level (although not yet normal), you’ll be able to go home as long as a relative or friend stays with you. You’ll be given a 24-hour telephone contact number in case you have any worries, and you’ll need to go back frequently to the hospital as an outpatient for check-ups.