Recovering after high dose chemotherapy and a stem cell transplant using your own stem cells (autologous transplant) can take time.
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, gradually becoming less frequent.
During the first weeks you will need medicines, mainly to prevent infection. If possible, the doctor or nurse will remove your central line before you go home. Although 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 of having a reaction to blood transfusions. To prevent this, 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 with you, telling 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, but it's usually for about a year.
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.
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 at higher risk of infections.
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.
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.
You might have difficulty arranging travel insurance. Most companies will cover you for loss of luggage, delays and cancellations by the tour company. Although 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 European Health Insurance Card (EHIC). You can apply for this online from the EHIC website, or phone 0300 330 1350. This covers you for medical treatment within the European Community. But you will not be covered if you need to be flown home. It will not cover the cost of services such as trips by ambulance.
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
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. 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