Going home from hospital

After your donor stem cell transplant, you will see your specialist doctor and nurse regularly. When your blood counts have reached a safe level, your transplant team will talk to you about going home.

Before you go home, you will need to:

  • have recovered enough from all your side effects
  • be eating and drinking well
  • be walking about by yourself
  • be able to take your tablets so you do not need drugs through your line.

Always carry the 24-hour hospital phone number you have been given. If you are worried about anything, call the number at any time of day or night. The doctors and nurses on the transplant unit always prefer you speak to them rather than risk being unwell at home.

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Your follow-up

You will need to have regular check-ups to make sure that you stay well and that there is no sign of the cancer returning. They will also be checking for any signs of chronic graft-versus-host disease (GVHD).

Usually your doctor will check you over and arrange some blood tests and possibly scans.

These check-ups can be worrying, as you will probably be anxious about whether the treatment has worked. It often helps to take a relative or friend with you for support. The check-ups are a good chance to talk to your doctor about any worries or problems you have. You can also call the transplant team or your nurse if you have any concerns once you are home.

Many people go on to make a full recovery with few health problems after a transplant. You will have the support of your transplant team or haematology team during your recovery.

Support from Macmillan

Macmillan is here to support you. If you would like to talk, you can:

Eating and drinking

While your immune system is recovering, you need to avoid certain foods to reduce your risk of infection. You can still eat a healthy, balanced diet which will help your body to recover. If you are having difficulties eating, ask your nurse or dietitian for advice.

Some foods you may be asked to avoid are:

  • raw or lightly cooked eggs
  • shellfish
  • all types of pate
  • soft cheeses, cheeses made with unpasteurised milk (such as parmesan and feta), mould-ripened cheese (like brie) and blue cheeses (like stilton)
  • probiotic or bio foods, drinks or supplements
  • cooked sliced meats
  • smoked fish
  • reheated rice
  • fresh nuts and nuts in shells
  • cream cakes
  • takeaway food
  • pre-wrapped sandwiches.

Check with your doctor before drinking alcohol. It slows down the recovery of the bone marrow and increases the risk of bleeding. It can also interact with some of the drugs you are taking.

Managing tiredness

Feeling you have little or no energy (fatigue) is very common after this treatment. It can take many months to get your energy back. For some people, it can take much longer. Recovery is a gradual process, so don't expect too much of yourself.

Save your energy for the things you enjoy doing, or things that have to be done. Accept offers of help from family and friends. Gentle exercise, such as short walks, can help increase your energy levels. 

We have more information about managing fatigue.

Being more physically active

Regular, gentle walks help to keep your muscles toned. While your blood count is still recovering, certain types of exercise are not suitable. You can ask your specialist about this. 

After your blood counts have recovered, you can start doing more types. Regular exercise can help with your recovery and future health. But it is a good idea to increase the amount gradually.

Socialising

It is important to spend time with family, friends and your partner, if you have one. You should also do things you enjoy. But it is important to ask your team for advice about how to do this safely.  They can give you information that is right for you and your situation.  

In general, you should try to avoid crowded places until your immune system has recovered. This includes shops, cinemas and public transport at busy times. 

You should still avoid contact with children who have infectious illnesses such as chickenpox or measles. Also avoid people with sickness and diarrhoea. If you are worried you have been in contact with someone with an infectious illness, contact your transplant team.

Driving

If you feel very tired, you may find it hard to concentrate. This can make you less alert and can slow down your reaction time.

It is best to avoid driving if you feel like this. Ask someone else to drive you instead. You can ask your transplant team if there is help with transport for hospital appointments.

Some drugs cause side effects that may make it unsafe for you to drive. Speak to your doctor about any concerns you have.

Your sex life

Your treatment does not stop you being able to have sex. But before going home, check with your doctor if there is any reason why you cannot go back to your usual sex life.

It is normal to have a low sex drive after treatment. We have more information about effects on your sex life and tips that may help.

Contraception

You may have been told that having a donor stem cell transplant means you can no longer get pregnant or make someone pregnant make someone pregnant. But you should still use contraception while you are recovering from the treatment to avoid a pregnancy.

Cancer treatments may harm a developing baby. And in the first few months, you will be taking medicines that could affect a developing baby.

Hormone replacement therapy

Women may have an early menopause because of their treatment. As well as periods stopping, other symptoms include:

  • hot flushes and sweats
  • vaginal dryness
  • mood and concentration changes
  • not feeling like sex (low sex drive).

Most of these symptoms can be helped by hormone replacement therapy (HRT). You can talk to your specialist doctor or nurse about this.

Returning to work or education

By the end of the first year, your immune system should usually be starting to work well. Your bone marrow should be making healthy blood cells. Your weight and strength will gradually recover.

When you feel well enough, you may start thinking about getting back to work or education. Talk to your doctor about this first. Try not to overdo things.

Talk to your manager, guidance staff or teachers about the best way to do this. You will need to plan a gradual (phased) return. Employers can usually support you by allowing flexible working. This may include a phased return, working part-time or working from home. They may also be able to change certain parts of your job to make things easier for you.

Think about whether you want them to tell other people about your treatment before you return. 

We have more information about work and cancer.

Vaccinations

After a donor stem cell transplant, you lose your immunity to illnesses that you were vaccinated against as a child. You need to have these vaccinations again. You will also need vaccinations against common infections such as flu and coronavirus. Your specialist doctor will talk to you about this and advise you when to have these.

There are some types of vaccines (live vaccines) you need to avoid until your immune system is fully working. Try to avoid contact with young children for a few days if they have had the flu vaccine as a spray through the nose. If your child has had the rotavirus vaccine that is given by mouth, do not change or handle any dirty nappies.

Your haematology doctor will tell you which vaccinations are safe and which ones you should avoid.

Holidays and travel

As your immune system recovers and the time between hospital visits get longer, you might think about going on holiday. Talk to your haematology doctor before booking a holiday. They usually advise you not to travel abroad in the few months after treatment. It may depend on:

  • how well your immune system is working
  • if you are still on high doses of immunosuppressants.

Ask your doctor about any vaccinations you may need. When you travel, it is helpful to take a letter from your doctor explaining your medical history. You should also take the contact telephone numbers for your hospital.

When you travel, it is helpful to take a letter from your doctor explaining your medical history and giving contact telephone numbers for your hospital.

It can be difficult to get travel insurance if you have cancer, or if you have had cancer before. We have information on travel and cancer that has helpful, practical tips about travelling.

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Sun protection

After your transplant, it is important to protect your skin from the sun. Being exposed to sunshine can trigger graft-versus-host reactions. You also have more risk of developing skin cancer.

Use a suncream with a high sun protection factor (SPF 30 or higher). Avoid strong sunlight and cover up with clothing and a hat in the sun. It is important to continue protecting your skin for the rest of your life.

If you notice any changes to your skin let your doctor know.

Late effects of a donor stem cell transplant

Some treatment side effects may become permanent and others may develop years after treatment has finished. These are called late effects. They may be due to the treatment you had, or because your immune system does not work as well as before.

Your transplant team or your GP will monitor you closely long-term. This means that any problems with your health can be found and treated early. There are things you can do that may help reduce the risk of late effects, or to help manage them. Always let your doctor know about any problems you have.

Late effects may include:

  • Eye changes

    Your eyes may become dry and irritated. Using eye drops regularly will help.

    If you had total body irradiation (TBI), you also have more chance of developing a cataract. This is a cloudy patch in the lens of your eye. It can make your vision blurred or dim. Cataracts can be treated with a small operation.

    Have your eyes checked regularly and tell your doctor if you have any problems with your sight.

  • Underactive thyroid

    Your thyroid gland, which makes the hormone thyroxine, may not work as well. You will have blood tests to check this. It can be treated with thyroxine tablets.

  • Bone thinning

    The drugs and treatments you have had can increase your risk of bone thinning (osteoporosis). Women who have an early menopause are more at risk. Taking HRT can help to protect your bones.

    You can also ask your doctor if you should take vitamin supplements to help protect your bones.

    Tell your doctor if you get any problems with your bones. Eating a healthy diet and doing regular weight-bearing exercise, such as walking, will help look after your bones.

  • Effects on the heart

    The treatment may affect the way your heart works. You may have tests to see how your heart is working.

    If you have pain or tightness in your chest, feel breathless, or notice changes to your heartbeat, tell a doctor straight away. These symptoms can be caused by other conditions, but it is important to get them checked by a doctor.

  • Effects on the lungs

    Always tell your doctor if you develop wheezing or a cough, or if you feel breathless. You should also let them know if any breathing problems you have already have get worse. If needed, they can arrange some tests to check your lungs.

  • Effects on the kidneys

    The treatment can affect your kidneys. You will have regular blood tests to check your kidneys are working well. It is important to drink at least 2 litres (3½ pints) of fluids each day to help protect your kidneys. If you notice any changes with passing urine, such as passing more or less than usual, let you doctor know.

  • Tiredness (fatigue)

    Many people continue to feel very tired (fatigue) for months, and sometimes years after treatment with a donor stem cell transplant. This can be hard to cope with, but there are ways to help you manage fatigue. It can take time to recover, but going for gentle walks will help improve your energy levels.

  • Risk of another cancer

    After high-dose treatment you have more risk of developing a second cancer. The most common type is skin cancer. So protecting yourself from the sun is very important. But you should also

    • take part in national screening programmes to diagnose early cancers
    • see your dentist regularly
    • go to your GP straight away if you have possible cancer symptoms such as a lump or any unusual bleeding.

About our information

  • References

    Below is a sample of the sources used in our stem cell and bone marrow transplants information. If you would like more information about the sources we use, please contact us at cancerinformationteam@macmillan.org.uk

    Carreras, Dunfour, Mohty and Kröger. The European Society for Blood and Bone Marrow Transplantation: Hematopoietic stem cell transplantation and cellular therapies. Springer, Switzerland. 2019. 

    FACT-JACIE International Standards for Hematopoietic Cellular Therapy – product collection, processing and administration. 7th edition. 2018. 

    Anthony Nolan. Operations and patient services user guide. Available from www.anthonynolan.org. Accessed January 2019.


  • Reviewers

    This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer. It has been approved by Senior Medical Editor, Dr Anne Parker, Consultant Haematologist.

    Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF’s 10 criteria for trustworthy health information.

The language we use

We want everyone affected by cancer to feel our information is written for them.

We try to make sure our information is as clear as possible. We use plain English, avoid jargon, explain any medical words, use illustrations to explain text, and make sure important points are highlighted clearly.

We use gender-inclusive language and talk to our readers as ‘you’ so that everyone feels included. Where clinically necessary we use the terms ‘men’ and ‘women’ or ‘male’ and ‘female’. For example, we do so when talking about parts of the body or mentioning statistics or research about who is affected. Our aims are for our information to be as clear and relevant as possible for everyone.

You can read more about how we produce our information here.