Recovering after high-dose treatment with stem cell support

Once your blood count and side effects have improved, you can go home. For the first few months after a transplant, your immunity will be low, so you will have medicines to reduce the risk of infection. You may also need blood or platelet transfusions. You will see your specialist doctor and nurse regularly.

Always 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.

You will also be advised to use effective contraception for the first few months to prevent becoming pregnant or fathering a child. This is because some of the medicines you are taking may harm a developing baby.

Some treatment side effects may become permanent and others may develop years after treatment has finished. These may include bone thinning or effects on the heart and lungs. 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.

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

Your doctor or nurse can give you information about your diet once you are home. While your immune system is recovering, try to eat a healthy, balanced diet and avoid possible risks of infection from food. They may give you a list of foods to avoid, which might include:

  • unpasteurised foods such as milk, and soft and blue cheeses
  • raw or lightly cooked eggs
  • meat, fish, shellfish or poultry which has not been thoroughly cooked
  • pâté
  • takeaway food
  • food that is not completely fresh.

Some general advice on eating and drinking is:

  • Make sure that frozen foods are completely defrosted before you cook them.
  • Wash salads and fruit thoroughly before eating them.
  • Peel fruit if you have been told to do so.
  • Do not eat food after its ‘use by’ date.
  • Take care to keep raw and cooked foods apart.

Once your immune system is back to normal, you can eat whatever you like. Your dietitian or nurse will give you advice.

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.


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.


Contraception

Although your fertility may be affected, it is still important to use effective contraception after treatment. Doctors and nurses usually advise you to avoid getting pregnant or fathering a child soon after treatment. This is because in the first few months, you will be taking medicines that could affect a developing baby. Your doctor or nurse will tell you how long you need to use effective contraception for.


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.


Going back to work, school or college

When your blood counts have recovered, you can ask your doctor about going back to work, school or college. You should do this gradually, by going part-time to begin with. It is a good idea to talk to your employer, teacher or tutor about the best way of returning. Think about if you want them to tell other people about your treatment before you return. We have more information about work and cancer issues. We also have information about education for teens and young adults.


Vaccinations

After high-dose treatment with stem cell support, you may lose your immunity to illnesses you were vaccinated against as a child. You may need to have some of these vaccinations again. You will also need vaccinations to protect you against common infections such as flu. Your haematology doctor will discuss your immunity with you and give you advice about when you should have your vaccinations.

There are some types of vaccines (live vaccines) that you need to avoid until your immune system is back to normal. If you have young children, they should avoid the flu vaccine that is given as a spray through the nose. This because it is a live vaccine. Talk to your haematology doctor or specialist nurse about which vaccinations are safe to use.


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

For several months after treatment, your skin will be more sensitive to the sun and you may burn more easily. Use a sun cream with a sun protection factor (SPF) of at least 30, and cover up with clothing and a hat. It is important to remember you can burn even through clothing if you are out in hot sun for a long time.


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.

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