Recovery after a stem cell transplant

A stem cell transplant Open a glossary item is also called intensive treatment. It allows you to have high doses of chemotherapy to kill the myeloma cells. The chemotherapy also damages the normal bone marrow cells.

After the chemotherapy, you have new stem cells into your bloodstream through a drip. For myeloma, you usually have a transplant using your own stem cells. This is called an autologous transplant or auto transplant. The cells find their way back to your bone marrow. Your body then starts making blood cells again and your bone marrow slowly recovers.

It can take time to recover after this treatment. If you have been in hospital for your transplant, you might feel anxious about going home. Your nurses and doctor will help you plan for going home. And when you get home, you can contact them with any worries or questions.

Follow up and care when you go home

You need regular follow up appointments after your transplant. These may be weekly to begin with. They gradually become less frequent. These appointments are to:

keep an eye on your general recovery
check your blood cell levels
find out how well the treatment has worked

Your central line
The doctor or nurse might remove your central line before you go home. But you may need to keep the central line in if you still need platelet or blood transfusions. You might keep it until your blood counts improve.

Blood products
You might still need to have blood or platelet transfusions after you go home. During the first few months you are at risk of having a reaction to blood transfusions. To prevent this, any blood or platelets you have must be irradiated. This means they have been treated with radiation. This destroys any white cells that could cause the reaction.

Your nurse will give you a card to carry with you. This tells doctors 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. It is usually for about a year.

Feeling very tired (fatigue)

It takes a long time to get over intensive treatment such as a stem cell transplant. It may be several months before you really feel you have got your strength back. Feeling extremely tired is normal to begin with and affects some people more than others.

Take things slowly when you get home. You will need to get plenty of rest. You can talk to your doctor or nurse about it. They might suggest ways you can improve your energy levels.

Reducing your 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 at higher risk of infections.

Your doctor and nurse will talk to you about what you can do to lower your risk of getting an infection.

Medicines to prevent infection

You will need to take medicines to prevent infections for the time you are in hospital, and for the first few weeks at home. When you are fully recovered from your transplant you may need to have vaccinations against certain infections. You might need a regular flu jab each autumn.

Eating and drinking

During your time in hospital, you're 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'll 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 dietitian for specialist advice.

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 recovers, you can go out normally again. Ask about this at your 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 have got some of your strength back. Talk to your employer about this.

You may want to think about whether you would like them to talk to your colleagues about your cancer and treatment before you start back at work. You may decide you would like to do this yourself once you get there.

Going on holiday

Before you go

Doctors usually advise against going abroad for the first 6 months after your transplant.

Talk to your doctors about how safe it is for you to fly, and whether you need any vaccinations. It is helpful to carry a doctor's letter outlining your treatment and giving a contact number for emergencies.

Travel insurance

You might have difficulty arranging travel insurance. Most companies will cover you for loss of luggage, delays and cancellations by the tour company. But they might not cover you for the cost of medical treatment abroad. If a company decides to 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 free Global Health Insurance Card (GHIC). You can apply for this online from the NHS website. If you still hold a valid EHIC card you can use this until it expires. You will then need to apply for a UK GHIC.

These cards don't cover the cost of any medical treatment that you planned in advance, only for unexpected needs. But if you need continued treatment for an ongoing illness while you're abroad, such as regular injections, the UK EHIC or UK GHIC covers this. Remember, the cards might not cover everything you'd get in the NHS.

Protecting your skin

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, and can burn more easily. Try to wear long sleeves, hat, and trousers in the sun. Use a high factor sun cream.

Your sex life

A stem cell 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 fertility

These changes take time to get used to. Some will get better by themselves, for example your hair will grow back and you’ll regain weight. It is important to give yourself time. Talking to your partner, if you have one, about how you both feel might help.

Recovering after a donor transplant

A donor transplant is a transplant using another person’s stem cells. It is also called an allogeneic transplant. This type of transplant isn't a common treatment for myeloma. Most people with myeloma have a transplant using their own stem cells (autologous transplant).

But if you are young and fit enough, and have a suitable donor, your doctor may consider you for a donor transplant. 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