The side effects of a transplant are usually worst just after chemotherapy and radiotherapy and for a few weeks afterwards.
The possible side effects of a transplant depend on your:
- treatment schedule
- type of transplant
High dose chemotherapy can have the same side effects as standard chemotherapy. You have the same chemotherapy drugs. But as you are having higher doses, the side effects might be more severe.
You might have additional side effects if you also have radiotherapy to your whole body (total body irradiation).
Side effects of high dose chemotherapy
Chemotherapy side effects can start straight after your treatment and last for some time afterwards. When your blood counts start to rise you usually start to feel better.
Some side effects are serious and they can be life threatening. Let your team know if you have any side effects. They can do a lot to help you.
Other side effects might affect you in the longer term.
Let your team know about any side effects. They can help to relieve some of these:
You have fewer white blood cells in your bloodstream after your treatment. This means you are more at risk of getting an infection. You are most likely to get an infection from the normally harmless bacteria we all have in our digestive systems and on our skin.
To help prevent infection from body bacteria, you might have mouthwashes and tablets known as gut sterilisers (these are antibiotics). And your nurse will encourage you to have a shower each day.
You are also at risk of infection from food. The nurses on the ward will tell you and your relatives about the food you can and can't eat. Advice might include:
- hot meals must be thoroughly cooked and eaten fresh
- fruit must be washed and peeled
- salads must be carefully washed (but are usually not allowed)
- you can't have lightly cooked or raw eggs
- you can't have fresh cream or soft cheese
You are at risk of getting an infection called cytomegalovirus (CMV) which can affect the lungs. Let your doctor or nurse know if you feel breathless.
The domestic staff clean your room every day. Your visitors have to wash their hands before they come into your room. And they might have to wear disposable gloves and aprons. Visitors with coughs and colds are not allowed. Some hospitals don't allow you to have flowers in your room, because germs can grow in the water.
Even with all these precautions, most people do get an infection at some point and have to have antibiotics. You can help yourself by trying to take care of your mouth properly, getting up to shower and having your bed changed each day. It is important to try to do this even on the days when you really don't feel like it.
Your red blood cell count falls after your treatment (anaemia). If it falls too low, you feel very tired and have little or no energy. You might also feel breathless when you move around. This is because red blood cells contain haemoglobin which carries oxygen around the body. Your doctor will check your blood counts each day.
You can have a blood transfusion if you are anaemic. This can help you to feel better very quickly.
Some people have a reaction to the blood, although this is rare. Tell your doctor or nurse if you feel hot or cold and shivery during the infusion. Your nurse will give you medicines to reduce the reaction.
Your platelet levels in the blood will fall after your treatment. Platelets help the blood to clot. A low platelet level means you are at risk of bleeding. Tell your nurse or doctor straight away if you have any of the following signs:
- blood in your urine
- blood when you have your bowels open
- bruises or tiny red spots on your skin
- bleeding gums
You might need a platelet transfusion.
Some people have a reaction to the platelets. This can make you feel hot or very cold and shivery when you are having the transfusion. Tell your doctor or nurse if you have this. They will give you medicines to reduce the reaction.
Your platelet count can take quite a while to get back to normal after a bone marrow or stem cell transplant. After having your own stem cells (an autologous transplant) it can take a few months to really recover.
You might feel sick after your chemotherapy, but you should start to feel better after a couple weeks. Unfortunately other treatments you have can also make you feel sick, such as antibiotics. You can have anti sickness medicines for as long as you need them.
You might have diarrhoea as a reaction to the chemotherapy and radiotherapy. You might also have it due to an infection or because you have graft versus host disease (GvHD). Tell your nurse or doctor if the diarrhoea is severe. They will give you medicine to help. You may also need treatment for the underlying cause of the diarrhoea.
Your mouth might get sore. It may be painful to swallow drinks or food. You will have mouth washes to keep your mouth healthy.
You can have painkillers to reduce the soreness. Take them half an hour before meals to make eating easier.
You won't have much appetite just after your transplant. Try small meals throughout the day and eat whenever you feel like it. Your dietitian will give you high calorie drinks if you can't eat much. Or you might have liquid nutrition through a tube into your tummy or through your central line.
You will feel very tired and run down after your transplant. This will be at its worst during the second and third weeks when your blood cell counts are at their lowest.
Slowly you will feel that you have more energy. But you will feel more tired than usual for quite a long time after your transplant. This could last for up to a couple of years.
You could lose all your hair. This includes your eyelashes, eyebrows, underarm, leg and sometimes pubic hair. It usually starts gradually within 2 to 3 weeks after treatment begins.
Your hair will grow back once your chemotherapy treatment has finished. This can take several months and your hair is likely to be softer. It can also grow back a different colour or be curlier than before.
- Ask about getting a wig before you start treatment so you can match the colour and texture of your real hair.
- You could choose a wig for a whole new look.
- Think about having your hair cut short before your treatment starts.
- Some people shave their hair off completely so they don't have to cope with their hair falling out.
- Wear a hairnet at night so you won't wake up with hair all over your pillow.
Side effects of radiotherapy
Treatment for ALL can include whole body radiotherapy. This is called total body irradiation (TBI). You have it after high dose chemotherapy, just before you have your stem cell or bone marrow transplant.
Radiotherapy side effects include:
- feeling or being sick
- tiredness and weakness (fatigue)
- problems with your thyroid (hypothyroidism)
- heart problems
- risk of second cancer
- hair loss
You might sleep a lot for a few days after the treatment. Your nurses make sure you have as much anti sickness medicine as you need. Do tell your nurses about sickness and diarrhoea so they can give you something to help control it.
Infertility is a long term side effect of this type of treatment. Unfortunately most people can no longer have children after high dose treatment. This can be very difficult for some people to cope with.
Sometimes men and teenage boys can store sperm before they start their chemotherapy, so that they can still father a child in the future. This is called sperm banking. Ask your doctor if you think you would like to do this.
For women, chemotherapy can cause an early menopause. You might be able to have hormone replacement therapy (HRT) to treat the symptoms of a menopause. Ask your doctor about this.
Sometimes women can freeze their eggs or embryos before they start treatment. Talk to your doctor early on if you want to find out more about this. It can take a few weeks to do this and may delay your cancer treatment. So it might not be possible. Your nurse will help support you with this.
Graft versus host disease
Graft versus host disease (GvHD) is a side effect of transplants from a relative or matched unrelated donor.
GvHD happens because the donor stem cells contain cells from your donor's immune system. These cells sometimes recognise your own tissues as being foreign and attack them. This causes side effects, but can also be an advantage. This is because the immune cells might also attack any leukaemia cells left after your treatment.
GvHD can be acute or chronic.
Acute GvHD starts within 100 days of the transplant. It can cause:
- weight loss
- changes in the way your liver works
- skin rashes
Your doctor will give you drugs called immunosuppressants if you develop GvHD after your transplant. These drugs calm down this immune reaction.
Chronic GvHD starts more than 100 days after the transplant. With chronic GvHD you might have skin rashes, diarrhoea, sore joints and dry eyes. Your doctor will treat your symptoms with steroids and other drugs. They usually suggest that you stay out of the sun because it can make your skin rashes worse.