Recovery after a stem cell transplant

A stem cell transplant is also called intensive treatment. It allows you to have high doses of chemotherapy to kill the cancer cells. The chemotherapy also damages the normal bone marrow cells.

After the chemotherapy, you have new stem cells into your bloodstream through a drip. You might have a transplant using:

• your own stem cells - this is called an autologous transplant
• stem cells from someone else – this is called a donor transplant or an allogeneic transplant

The stem cells find their way back to your bone marrow. Your body then starts making blood cells again and your bone marrow slowly recovers.

If you have been in hospital for your transplant, you might feel anxious about going home. Your nurses and doctor will help you plan for going home. And when you get home, you can contact them with any worries or questions.

You’ll start to feel stronger and more active again as time passes. But it takes a long time to get back to normal. It might be as long as a year before you really feel you are on the road to recovery.

Follow up and care when you go home

You need regular follow up appointments after your transplant. These may be weekly to begin with. They gradually become less frequent. These appointments are to:

• keep an eye on your general recovery
• check your blood cell levels
• find out how well the treatment has worked

It’s likely that you will get at least one infection after your transplant. You might need to stay in hospital again. This can be quite upsetting for you if you haven’t been home for long. 

Your central line
The doctor or nurse might remove your central line before you go home. But you may need to keep the central line in if you still need platelet or blood transfusions. You might keep it until your blood counts improve.

Blood products
You might still need to have blood or platelet transfusions after you go home. During the first few months you are at risk of having a reaction to blood transfusions. To prevent this, any blood or platelets you have must be irradiated. This means they have been treated with radiation. This destroys any white cells that could cause the reaction.

Your nurse will give you a card to carry with you. This tells doctors that any blood you need in an emergency should be irradiated. Your doctor or nurse will tell you how long you need to carry this card for. It is usually for about a year.

Recovering after a donor (allogeneic) transplant

A donor transplant is a transplant using another person’s stem cells. It is also called an allogeneic transplant.

Recovery after a donor transplant takes much longer. And the risk of side effects or complications is higher. The 2 most common problems after this type of transplant are:

• the risk of infection is higher and lasts longer than in transplants using your own stem cells
• a particular complication of donor transplants called graft versus host disease

Feeling very tired (fatigue)

It takes a long time to get over intensive treatment such as a stem cell transplant. It may be several months before you really feel you have got your strength back. Feeling extremely tired is normal to begin with and affects some people more than others.

Take things slowly when you get home. You will need to get plenty of rest. You can talk to your doctor or nurse about it. They might suggest ways you can improve your energy levels.

Reducing your risk of infection

After a transplant, it also takes time for your blood cell levels to recover and for your immune system to work properly again. During this recovery period you are at higher risk of infections.

Your doctor and nurse will talk to you about what you can do to lower your risk of getting an infection. 

Medicines to prevent infection

You will need to take medicines to prevent infections for the time you are in hospital, and for the first few weeks at home. When you are fully recovered from your transplant you may need to have vaccinations against certain infections. 

Eating and drinking

During your time in hospital, you're usually told to avoid foods that are known to increase risk of stomach or bowel infections. Your doctor or nurse will let you know when you can start eating normally again. The advice can vary slightly between hospitals.  But some general advice during your recovery is to:

• wash your hands before cooking and eating
• eat only freshly cooked food
• cook food properly, particularly eggs which shouldn’t be soft
• avoid soft cheeses and creamy cakes and puddings
• eat foods before the use by date
• wash salads and fruit thoroughly
• avoid takeaways and fast food restaurants

Don't drink more than the recommended amount of alcohol. Ask your doctor if alcohol interferes with any medicines you are taking. 

You'll probably have lost weight during your treatment, but you should gradually put it back on and start to feel stronger. Talk to your doctor or nurse if you are worried about your weight. They may be able to arrange for you to see a dietitian for specialist advice.

Going out

During your first few weeks at home, you can help reduce infection risk by:

• avoiding crowded places, such as cinemas, restaurants and public transport
• avoiding anyone who has come into contact with an infectious disease such as chickenpox or flu

Once your white cell count recovers, you can go out normally again. Ask about this at your appointments. You don’t want to avoid socialising unless you have to, and it’s easy for your doctor or nurse to forget to tell you when you can relax these restrictions.

Going back to work, college or school

You will need some time to recover before you get back to your usual daily life.

It is a good idea to go back part-time at first, until you have got some of your strength back. Talk to your employer or teachers about this.  You might also want to think about whether you would like them to talk to your colleagues or other students about your illness and treatment. Or you might prefer to do this yourself.

Sport and exercise

Physical activity is a great way to help you feel better, both physically and emotionally. It can help to reduce tiredness (fatigue) after treatment. How much you can do will depend on how fit you are and how you feel. You will probably have days when you don’t have so much energy. Listen to your body and build up slowly.

Gentle walking is suitable for most people to start with. If you don't have a central line, you can do most contact sports and swimming once your blood counts are back to normal and you feel up to it. But while your platelet count is still low, you have to be careful about getting any knocks. 

Holidays and travel

Before you go

Speak to your doctor before booking a holiday. Most people can go away but to begin with it’s best to stay in the UK. You can’t travel by plane if your platelets are too low.

Whenever you go away from the hospital that treated you it is helpful to carry a doctor's letter with you. This gives a summary of the treatment you have had and any medicines you are taking. It includes a contact phone number for emergencies. Your doctor might want to contact a treatment centre near to where you are going. They can let them know you are in the area, just in case you have any problems.

After the first year, you can go where you like. But you might need to avoid having some vaccinations.

Travel insurance

To start with, you might have difficulty arranging travel insurance. Most companies cover you for loss of luggage, delays and cancellations by the tour company. But they won’t want to cover you for the cost of medical treatment abroad, or for cancellations by you. If a company will insure you, they will almost certainly ask for a letter from your consultant about your fitness to travel.

You may also be able to get a free Global Health Insurance Card (GHIC) if you are travelling in Europe. You can apply for this online on the NHS website.

Protecting your skin

When on holiday (or outdoors at home in the summer) you need to take care in the sun. Your skin is more sensitive after chemotherapy or radiotherapy, and can burn more easily. If you have graft versus host disease (GvHD) of the skin, the sun could make it worse.

Try to wear long sleeves, hat, and trousers in the sun. And use a high factor sun cream. 

Your sex life

A transplant doesn't physically stop you from having a normal sex life. But you might find that your sex drive is low for a while. This could be due to:

• the treatment
• lack of strength and energy
• worry about the future
• feeling upset about losing your fertility
• lack of confidence about changes in your appearance that a transplant causes (hair and weight loss, for example)
• getting used to changes in levels of sex hormones

Some of these take time to get used to. Some get better on their own. For example, your hair will grow back and you will put on weight. The most important thing is to give yourself time. And if you have a partner, keep talking about how you are both feeling.

Your feelings

You’ve been through a lot and it can take time to get back to a new sense of normal. It can be difficult to get back to work and family life. You may feel frustrated that you don’t feel as well as you hoped as quickly as you would like. There may be set backs along the way, and you may be in and out of hospital for a while.

After going through such intensive treatment some people may feel a new enthusiasm for life and appreciate the simple things. Other people may find it difficult to cope with and make sense of what they have been through. Some people may have anxiety or depression.

It’s important to talk things through with people around you or your doctors or nurses. They can help you get more help if you need it. Many people find it helpful to have counselling.