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Life after transplant for ALL

transplants and acute lymphoblastick leukaemia image

This page tells you about life after a transplant for acute lymphoblastic leukaemia (ALL). There is information about

 

A quick guide to what's on this page

Life after transplant for acute lymphoblastic leukaemia

It takes a long time to get over a bone marrow or stem cell transplant. It is not unusual to have to go back into hospital once or twice. And it may be a year before you really feel you are on the road to recovery.

Avoiding infection

To avoid infection for the first few months you will need to avoid undercooked eggs, soft cheeses, blue cheese, shellfish, creamy cakes and puddings, and takeaways and fast food restaurants. Eat only freshly cooked foods, and wash salads and vegetables thoroughly. If possible, avoid crowded places such as public transport. Keep away from anyone who has come into contact with an infectious disease such as chicken pox or measles.

School, college or work

You will not be able to get back to your usual daily life until your white cell count is nearing normal. It is a good idea to go back to work or school part time at first. Talk to your employer, teacher or tutor about this. You may also want to think about whether you would like them to talk to your colleagues about your illness.

Sport and exercise

Exercise will help you to get your strength back. But while your platelet count is still low, you have to be careful about getting any cuts or bumps. Choose gentle exercise.

Holidays and travel

If you want to go abroad, talk to your doctors. They may want to contact a treatment centre near where you are going and let them know you are in the area.

 

CR PDF Icon You can view and print the quick guides for all the pages in the living with ALL section.

 

 

Recovery

It takes a long time to get over intensive treatment such as a bone marrow or stem cell transplant. It is not unusual to have to go back into hospital once or twice. And it may be a year before you really feel you are on the road to recovery. You will have your central line or portacath in until you no longer need platelet or blood transfusions. You will probably get at least one infection that needs hospital treatment.

Gradually you will put on weight and start to feel stronger. But it will take a while to get back to normal in a few areas of your life such as those below.

 

Eating and drinking

For the first few months

  • Eat only freshly cooked food
  • Avoid undercooked eggs
  • Avoid soft cheese, blue cheese and creamy cakes and puddings
  • Avoid shellfish
  • Wash salads and fruit very thoroughly
  • Don’t drink too much alcohol
  • Avoid takeaways and fast food restaurants

Apart from the alcohol, all these precautions help to prevent infection. Too much alcohol can slow the recovery of your bone marrow. Ask your doctor if alcohol will interfere with any drugs you are taking.

 

Your social life

Reduce your risk of infection by

  • Avoiding crowded public places (cinemas or public transport for example)
  • Avoid anyone who you know has come into contact with infections such as chicken pox or measles

Once your white cell count has recovered enough you will be able to go just about anywhere. This takes roughly 3 to 6 months, but check with your doctor or specialist nurse to be sure.

 

School, college or work

You will not be able to go back to normal daily activity until your white cell count is almost normal. It is a good idea to start part time until you have got some of your strength back. Talk to your employer, teacher or tutor about this. You may also want to think about whether you would like them to talk to your colleagues about your illness and treatment. Or whether you would like to do this yourself.

 

Sport and exercise

Exercise will help you to get your strength back. But while your platelet count is still low, you have to be careful about getting any cuts or bumps. Choose something gentle like walking. When your white cell count is improving you can go swimming.

Once all your blood counts are getting back to normal you can do just about whatever you like.

 

Holidays and travel

If you want to go abroad, talk to your doctors. They will feel happier if they can contact a treatment centre near to where you are going and let them know you are in the area, just in case you have any problems. You cannot travel by aeroplane if your platelets are too low.

After the first year, you can go where you like. But you should avoid some vaccinations. And following a donor transplant, you should not have live vaccinations. There is information about travelling abroad and vaccinations.

Whenever you go away from the hospital that treated you, it is helpful to carry a doctor's letter with information about your treatment and giving a phone number for emergencies.

To start with, you are likely to have difficulty arranging travel insurance. Most companies will cover you for loss of luggage, delays and cancellations by the tour company. But at first, they will not want to cover you for the cost of medical treatment abroad. Or if you need to cancel your trip. If a company agrees to insure you, they will almost certainly ask for a letter from your consultant about your fitness to travel. As the time since your treatment increases, you will find getting travel insurance easier.

There is more about travel insurance in the financial matters section.

We have a whole section about travelling with cancer

 

Your sex life

A transplant does not physically stop you from having your normal sex life. But you may find that your sex drive is low for a while. This may be due to

  • The treatment
  • Lack of strength and energy
  • Worry about the future
  • Feeling upset about losing your fertility
  • Lack of confidence after the changes in your appearance that a transplant causes at first (for example, hair loss)
  • Getting used to changes in sex hormone levels

Some of these effects take time to get used to. Some will get better on their own - for example your hair will grow back and you will put on weight. It is important to give yourself time to recover. It can also help to keep talking to your partner, if you have one, about how you are both feeling.

You can find more information about sex, sexuality and cancer in the coping with cancer section.

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Updated: 19 May 2015