Recovering after a donor stem cell (allogeneic) transplant

You usually go home when your blood count and side effects have improved. For the first few months, you have regular clinic appointments and blood tests. You will continue taking different drugs, such as antibiotics and immunosuppressive drugs. Remember that recovery takes time.

Always follow the advice your team give you. Carry a 24-hour telephone number for your hospital or transplant unit. Contact them immediately if you feel unwell, your temperature rises or you have any signs of infection.

Other advice may include:

  • Eating a healthy diet and limiting the risks of infection from food.
  • Getting plenty of rest but gradually becoming more physically active.

Seeing family and friends but avoiding crowded places while your immune system is recovering.

You will need to have certain vaccinations again as advised by your specialist. After a year, your immune system should be working well. You may be preparing to return to work or education. 

Your doctor will explain the possible late effects of your treatment and how you can look after your long-term health. You will continue to see your specialist at clinic appointments but eventually this becomes yearly.

Preparing to go home

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.

You can usually have your central line removed when you leave hospital.

You may feel impatient to go home but anxious about leaving the support of the hospital. It can take time to adjust after spending so long in hospital. If you live on your own, you will need to arrange for a relative, friend or partner to stay with you. Or the hospital staff can arrange support from carers when you go home.

Because there are still some things you can’t do, it may seem as though you will never get back to normal life again. As you recover, you will find that things gradually shift away from the treatment and back to day-to-day living.


The first few months out of hospital

After you go home you will still need to go back to the hospital outpatient clinic for regular checks. Even after your bone marrow has recovered and your neutrophils are back to a normal level, your immunity will be low for a few months.

Sometimes you may still need blood or platelet transfusions. These can usually be given as a day patient. You may have to take regular doses of antibiotics and anti-viral drugs to reduce the risk of infection.


When to contact the hospital

Always carry the 24-hour hospital telephone number you have been given. If you are worried about anything, contact them on that 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.

It is important to take care of your health during this time. Your doctors and nurses will give you advice about what precautions you will need to take once you are home.

Contact your hospital straight away on the number you have been given if:

  • your temperature goes over 37.5°C (99.5°F)
  • you suddenly feel unwell, even with a normal temperature
  • you have any signs of an infection – such as feeling shivery or short of breath, having a sore throat or cough, having diarrhoea or needing to pass urine often
  • you have been in contact with someone who has an infectious disease, for example chickenpox or measles.

If you become unwell, you may need to go back into hospital. It is quite common for this to happen once or twice after high-dose treatment. Although this can be worrying for you, it is not a major setback.

If you feel unwell and are unable to contact the hospital, ask someone to take you to the nearest hospital accident and emergency department immediately.


Eating and drinking

For the first few months 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.

We have included some advice here on eating and drinking. Your dietitian or transplant nurse will give you more specific advice.

Some foods you may be asked to avoid are:

  • raw or lightly cooked eggs
  • shellfish
  • all types of pâté
  • 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.

Some general advice on eating and drinking is:

  • completely defrost frozen foods before cooking
  • wash and peel fruit and vegetables, and wash salads thoroughly
  • use food before its use by date
  • keep raw and cooked foods apart
  • thoroughly cook all foods, especially those containing pork because of HEV
  • cook all meats until juices run clear.

Once your blood counts are back to normal, you can usually eat what you like. But try to continue to eat healthily.

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. 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 lots of useful information about fatigue.


Becoming more physically active

Being more physically active by taking regular, gentle walks helps keep your muscles toned. While your blood counts are recovering, certain types of exercise won’t be suitable. You can ask your specialist about this.

After your blood counts have recovered, you can start doing whatever exercise you prefer. But it is a good idea to increase the amount gradually. Regular exercise can help with your recovery and improve your future health. We have more information in our section about physical activity and cancer.


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 try to avoid crowded places until your immune system has recovered. This includes public transport at busy times, shopping centres, cinemas and pubs. After 3 to 6 months, you should be able to have a full social life again.

You should still avoid contact with children who have infectious illnesses such as chicken pox or measles. If you are worried you have been in contact with someone who has an infectious illness, contact your transplant team.


Driving

If you feel very tired, you may find it hard to concentrate and therefore be less alert. Your reaction time will also be reduced.

It is best to avoid driving if you feel like this. Ask a family member, friend or your partner, if you have one, to drive you instead. 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 can’t go back to your usual sex life.

It is normal to have a low sex drive after treatment. This may be because you are too tired or feel anxious. Women may be coping with effects of the menopause, such as vaginal dryness. This should improve as you recover.

Talk to your partner about how you feel. There are different ways of showing your love and affection for someone, even if you don’t feel like having sex. You can wait until you and your partner feel ready.

Some people have concerns about their body image because of changes such as hair loss or weight loss.

Let your doctor or nurse know if you are having problems with your sex life. There may be things that can help. If you feel uncomfortable talking to your doctor or nurse, you may want to call us on 0808 808 00 00. We also have information about sexuality and body image that you might find helpful.


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
  • a 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.


The first year out of hospital

By the end of the first year, your immune system should be working well and your bone marrow should be making healthy blood cells. For some people, this may take a little longer so you should continue to be careful. You will still have regular follow-up appointments with your specialist doctor and nurse.

You may still get infections, such as shingles and chest infections. Some people may need to go into hospital to have them treated. Very occasionally, some people still need blood transfusions.

Your weight and strength will gradually recover. When you feel well enough, you may start think about getting back to work or education. Talk to your doctor about this first. It is important not to overdo things.

It is not unusual to find this a challenging time. You may be starting to return to things you did before but still feel anxious about your health. Talk to your doctor and nurse about any concerns or worries you have.

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, as well as other vaccinations against common infections such as flu. Your specialist doctor will talk to you about this and advise you when to have your vaccinations.

There are some types of vaccines (live vaccines) you need to avoid until your immune system is fully functioning. Your haematology doctor will tell you which vaccinations are safe for you to have and which 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 first year after treatment.

After this, your immune system should be working well so you should be able to travel abroad. 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 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

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 sun cream with a high sun protection factor (SPF 30 or higher). Avoid strong sunlight and cover up with clothing and a hat in the sun. If you notice any changes to your skin let your doctor know.


Late effects

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.

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. We talk about some of the possible late effects on the next few pages.

Eye changes

Your eyes may become dry and irritated. Using eye drops regularly will help this. You also have more chance of developing a cataract, which 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 by giving you thyroxine tablets.

Bone thinning

The drugs and treatments you have had can increase your risk of developing 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 feel breathless. You should also let them know if any existing breathing problems get worse. If necessary, they can arrange for you to have tests to check your lungs.

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.

Your transplant team will monitor you closely for the rest of your life. This means that any problems with your health can be found and treated early.


What you can do

You can help to reduce your risk of another cancer and look after your bones and heart by:

  • not smoking
  • eating healthily and sticking with recommended drinking guidelines
  • doing regular exercise
  • protecting yourself from the sun
  • taking part in national screening programmes to diagnose early cancers or reduce the number of people developing certain cancers
  • seeing your dentist regularly
  • going to your GP straight away if you have possible cancer symptoms such as a lump or any unusual bleeding.


Your follow up

You will need to have regular check-ups to ensure that you stay well and that there is no evidence of your cancer or leukaemia returning. Usually you will have a medical examination, blood tests and possibly scans. Eventually, these should become yearly visits. You should be able to return to your normal way of life.

These check-ups can be worrying, as you will probably be anxious about whether the treatment has worked. It often makes it easier if you take a relative, friend or partner, if you have one, with you for support. The check-ups are a good opportunity to discuss any worries or problems you may have with your doctor.

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.

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