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Recovery after intensive treatment for myeloma

Men and women discussing myeloma

This page tells you about recovering after intensive treatment for myeloma. The information here is mainly about recovery after a stem cell transplant using your own stem cells, as this is the most common type of transplant used for myeloma. There is information below about

 

A quick guide to what's on this page

Recovery after intensive treatment for myeloma

It takes a long time to get over intensive treatment such as a stem cell transplant. And it may be several months before you really feel you’ve got your strength back. You may feel very tired for a long time and may need to build up daily activities gradually. You will need regular follow up appointments after your high dose treatment. These are to check your general recovery and blood cell levels, and find out how well the treatment has worked. Your appointments may be weekly to begin with, but if all is well they will gradually become less frequent. 

If possible, your doctor or nurse will remove your central line before you go home. But if you still need platelet or blood transfusions, you will need to keep the tube in until your blood cell levels improve. 

Preventing and avoiding infection

During the first few weeks, you will still be taking a few medicines, mainly to prevent infection. You may need to have some vaccinations, such as a flu jab or a vaccination to prevent chest infections. You may need to avoid certain foods that could contain harmful bacteria and your nurse or dietician will advise you about this. You may also need to avoid crowded places where you could come into contact with people who have infections such as colds or flu. 

Getting back to normal

After some time you will be able to go back to work. It may be helpful to talk to your colleagues beforehand. And to let your employer know if you may need any help at first. Doctors usually advise against going abroad for the first six months. Whenever you go away, it is helpful to carry a doctor's letter outlining your treatment and giving a contact number in case of emergency. You may have difficulty arranging travel insurance. But in the travel section you can find a list of helpful companies.
 

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

 

 

Follow up treatment and care

You will need regular follow up appointments after your transplant. These are to keep an eye on your general recovery, check your blood cell levels and find out how well the treatment has worked. These appointments may be weekly to begin with, but if all is well they will gradually become less frequent.

During the first few weeks you are still likely to be on quite a few medicines, mainly to prevent infection. If possible, the doctor or nurse will remove your central line before you go home. But if you still need platelet transfusions or blood transfusions you may need to keep the line in until your blood counts improve.

During the first few months after a transplant you are at risk from a reaction to blood transfusions. To prevent this happening, any blood or platelets you have must be treated with radiation (irradiated) first. This destroys any white cells that could cause the reaction.

Your nurse will give you a card to carry around with you, to let doctors know 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, but it is usually for about a year.

 

Feeling tired

It takes a long time to get over intensive treatment such as a stem cell transplant. And it may be several months before you really feel you’ve got your strength back. Feeling extremely tired is normal to begin with and affects some people more than others. The section about coping physically with cancer has information and tips about coping with tiredness.

 

Reducing the 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 more prone to infections. You will probably have to take medicines to prevent infections for the first few days and weeks at home. And when you are fully recovered from your transplant you may need to have vaccinations against certain infections. And you will need a regular flu jab each autumn.

During your first few weeks at home, there are things you can do to reduce your risk of infection from

Eating and drinking

During your time in hospital, you are 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, 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
  • Eat foods before the use by date
  • Wash salads and fruit thoroughly
  • Avoid takeaways and fast food restaurants

You will 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 dietician for specialist advice. The section on diet problems has a section on diet tips for putting on weight.

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 has recovered enough, you will be able to go out normally again. Ask your doctor or nurse about this at your clinic 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

It is a good idea to go back to work part time at first, until you’ve got some of your strength back. Talk to your employer about this. You may also want to think about whether you would like them to talk to your colleagues about your illness and treatment before you start back at work. Or whether you would like to do this yourself once you get there.

 

Going on holiday

Doctors usually advise against going abroad for the first six months after your transplant. If you want to travel, talk to your doctors about how safe it is for you to fly, and whether you need any vaccinations. Whenever you go away, it is helpful to carry a doctor's letter outlining your treatment and giving a contact number for emergencies.

You may have difficulty arranging travel insurance. Most companies will cover you for loss of luggage, delays and cancellations by the tour company. But they will not want to cover you for the cost of medical treatment abroad. Or for cancellations you make yourself. If a company will insure you, they may ask for a letter from your consultant about your fitness to travel.

You can travel without insurance. But you are taking a risk. If you travel in Europe, get a European Health Insurance Card (EHIC) application from your local post office, or you can apply by phone on 0845 606 2030. This ensures you are covered for medical treatment within the European Community. But you will not be covered if, for example, you need to be flown home. Or for the cost of extras in health care such as trips by ambulance. There is information about travel insurance in the coping with cancer section.

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 treatment, and can burn more easily. Remember to wear long sleeves, a hat and trousers in the sun. And use a high factor sun cream.

 

Your sex life

A transplant should not change your sex life. But you may find that your sex drive is low for a while. This may be due to

  • The treatment you’ve had
  • Lack of strength and energy
  • Worries about the future
  • Lack of confidence about changes in your appearance (such as hair and weight loss)
  • Changes in levels of sex hormones
  • Feeling upset about losing your fertility

Some of these take time to get used to. Some things get better by themselves, for example your hair will grow back and you’ll regain weight. The most important thing is to give yourself time. And it is important to keep talking to your partner, if you have one, about how you both feel.

Look at the section about sex, sexuality and cancer for more information about changes to your sex life.

 

Recovery after a donor transplant

Having a transplant from a donor (usually a brother or sister) is not done very often for myeloma. But if you are young and fit enough, and have a suitable donor, your doctor may consider you for this treatment or offer this as part of a clinical trial.

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

There is detailed information about the general side effects of transplants in the about cancer section.

 

Help and support

If you would like more information about life after treatment contact the Cancer Research UK information nurses or one of the myeloma organisations. They would be happy to help. Also there are books and booklets about transplants listed on our myeloma reading list.

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Updated: 2 December 2013