Side effects after high-dose treatment with stem cell support
The numbers of the different types of blood cells will be low for some time, and this can cause various problems. You’ll have blood samples taken every day to check the numbers of white blood cells, red blood cells and platelets.
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 (neutropenia). When you don’t have enough neutrophils, your risk of infection is increased.
As a result you’ll be at risk of infection, including infections 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 infection.
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 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. 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 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 foods that contain 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. People who are unwell because of an infection will be told not to visit. The nurses will explain what precautions, if any, your visitors need 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.
When you have a blood transfusion, the blood may be treated with radiation (irradiated) before being given to you. 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 number 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 (bowel motions) 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 types your doctor can prescribe.
The high-dose treatment 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 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 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, eating may be 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 liquid feeding you’re given is gradually reduced.
If you have diarrhoea, you will be given medicines to help control it. Let the nurses know if it doesn’t get better or if your bottom gets sore.
Hair loss 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.
Even though you’re tired, it’s a good idea to try 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 high-dose treatment. 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 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.
There are some less common problems that may occur after high-dose treatment with stem cell support.
Sometimes the infusion of stem cells doesn’t work and the bone marrow doesn’t produce enough new blood cells. This is known as graft failure and can lead to repeated infections, bruising, bleeding and anaemia.
In this situation, growth factors may be used to try to stimulate the bone marrow to recover. Total graft failure is rare, and the only way to treat this is with a second infusion of stem cells. Without the infusion of stem cells, a person will only live for a short time.
Veno-occlusive disease (VOD)
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Rarely, blood vessels in the liver can become swollen and blocked because of the high-dose treatment. This is known as veno-occlusive disease. If this happens, you’ll be given supportive treatment until your liver recovers.