Side effects are unwanted things that happen to you as a result of medical treatment. The side effects that you might have and how severe they are depend on a number of factors including:
- the type of treatment you have
- the combination of treatments you have
- the amount (dose) of the drug or radiotherapy
- the way you have a drug – as tablets or capsules, or by injection
- your general health
- your age
Many people are worried about the possible side effects of treatment. All treatments cause some side effects. But side effects vary from one person to another.
Treatments for leukaemia are continuing to improve. This means that more people are surviving with fewer side effects. There are medicines to help control most side effects that happen during or straight after treatment. Many of these effects stop when the treatment ends.
Side effects might be immediate or long term.
Immediate side effects
Fatigue (tiredness) is the most common side effect of treatment for cancer. For most people it gradually gets better over time. For some people it can be a longer term problem lasting several months or more. It is especially likely for people who have had a bone marrow transplant or stem cell transplant. Fatigue can be difficult and frustrating.
If fatigue is a problem for you, talk to your doctor or specialist nurse. There are lots of things that can help. First you may need tests to check that there isn’t an easily treatable cause of the tiredness, such as low thyroid hormone levels or anaemia. If there isn’t a direct cause, your doctor and nurse can suggest other things that may help.
After your treatment it may take some time to build up your body’s ability to fight infection. After a transplant it usually takes between 6 months to a year for your immune system to recover. If you have graft versus host disease it can take even longer than this.
Contact your doctor if you have any symptoms that suggest you might have an infection. The symptoms of infection include:
- a sore throat
- a high temperature
- pain when passing urine
- a cough or breathlessness
- flu-like symptoms, such as aching muscles, tiredness, headaches, and feeling shivery
Children who have had treatment for leukaemia need to have their routine childhood vaccinations again. After a stem cell or bone marrow transplant, both adults and children need to have their vaccinations again. Each hospital has their own guidelines about when to vaccinate following a transplant.
People shouldn't visit you in hospital or at home if they have kind of infection. Avoid very crowded areas where the risk of picking up and infection is greater.
Red blood cells contain haemoglobin which carries oxygen around the body. If the level of haemoglobin in your blood is low this is known as anaemia. You can feel very tired. You may also become breathless because the amount of oxygen carried around your body is lower. Some chemotherapy drugs can make you anaemic.
You can have a blood transfusion if your red blood cells are very low. After a transfusion you will feel more energetic, less tired and less breathless. Some people worry they may get an infection from a blood transfusion. All blood is now very carefully screened before it is used. The chances of getting an infection from a transfusion are tiny.
Platelets help to clot the blood to prevent bleeding. If the number of platelets in your blood is low you may:
- bruise easily
- bleed more than usual, even from small cuts or grazes
- have nosebleeds
- have a rash of small purple or red dots
The rash is called purpura and is caused by bleeding within the skin.
If your platelet count is very low you need to have a platelet transfusion in hospital. You have a drip of a clear fluid containing platelets into your vein. The new platelets start to work right away.
Feeling sick might be constant. It may be worse a few hours after chemotherapy treatment and you may be sick. Anti sickness injections and tablets can control it. Tell your doctor or nurse if you feel sick. You might need to try different anti sickness medicines to find one that works.
• Avoid eating or preparing food when you feel sick.
• Avoid hot fried foods, fatty foods or foods with a strong smell.
• Eat several small meals and snacks each day.
• Relaxation techniques help control sickness for some people.
• Ginger can help – try it as crystallised stem ginger, ginger tea or ginger ale.
• Try fizzy drinks.
• Sip high calorie drinks if you can’t eat.
Some types of chemotherapy can cause changes in the lining of your mouth and make it very sore. Some of these drugs can even cause mouth ulcers. Inflammation of the inside of your mouth is called mucositis.
It can happen about 5 to 10 days after you start treatment. It usually gradually clears up 3 to 4 weeks after your treatment ends.
Sometimes mouth ulcers can get infected. Your doctor or nurse can give you treatment for this. If you are having drugs that are known to cause mouth ulcers, your nurse may give you mouth washes to help prevent infection. You have to use these regularly to get the most protection.
If your mouth is really sore, tell your doctor or nurse straight away. They can help to reduce the discomfort. Some people need strong painkillers to help control mouth pain so that they can eat and drink. With some drugs, some people even need to have morphine for a short time, because their mouths are so painful.
Some chemotherapy and targeted cancer drugs can make food taste strange or may give you a metallic taste in your mouth. Food may taste:
Your taste usually gradually goes back to normal when your treatment is over but it may take a few weeks.
Some cancer drugs can affect the way that your heart works. The drugs most likely to affect your heart are some chemotherapy drugs. The effect may be temporary but can sometimes be permanent.
Cancer drugs may cause:
- mild thinning of your hair
- partial hair loss, or loss of patches of hair
- complete hair loss (alopecia)
Generally, chemotherapy is the type of cancer drug treatment most likely to cause hair loss. Complete hair loss is very unlikely with any other type of treatment. But some other cancer drugs can cause hair thinning. We can't tell beforehand who will be affected or how badly. Some drugs are more likely to cause hair loss than others.
Hair loss also depends on other factors such as:
- the type of drug or combination of drugs you are taking
- the dose
- your individual sensitivity to the drug
- your drug treatment in the past
If your hair is going to fall out, it usually begins within 2 to 3 weeks after treatment starts. It usually falls out gradually rather than suddenly.
The good news is that your hair will grow back once your chemotherapy treatment has finished. It might come back a different colour and may be more curly than before.
It will probably grow back at the same rate as it grew before chemotherapy. Within 4 to 6 months after your treatment ends, you should have a good head of hair.
Cancer drugs might lower your sex drive for a while due to tiredness or other side effects. Your sex drive will usually go back to normal some time after the treatment ends.
Chemotherapy can lower the amount of hormones your ovaries make. It can also cause an early menopause and stop you from being able to become pregnant in the future. It may cause an early menopause for some women.
You can talk to your doctor about this before your treatment. It is sometimes possible to store eggs or embryos before treatment.
Some types of chemotherapy can stop you from being able to father a child in the future. You can talk to your doctor about this as it is sometimes possible to collect and store sperm before treatment.
Diarrhoea usually happens in the first few days of treatment and can be quite severe. If you have bad diarrhoea, remember that you can easily become dehydrated. It is important to drink plenty.
You may also want to apply soothing cream around your back passage (anus). The skin in this area can get very sore and even broken if you have severe diarrhoea.
Tell your doctor or nurse if the diarrhoea becomes severe or lasts for more than a couple of days.
Coping with side effects
It can be difficult to cope with leukaemia and its treatment. There are medicines to help reduce side effects and other ways to help relieve them. There are also people who can support you and help you with the practical and social effects of AML.
Possible long term side effects
Treatments for acute myeloid leukaemia can cause long term side effects.