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Late effects after a stem cell transplant

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Having a stem cell transplant can have a long-term impact on your health and wellbeing, so you will be invited to yearly check-ups where your progress can be monitored.

You may also have access to a ‘late effects’ clinic. These services are run by clinical nurse specialists who are highly experienced in the needs of stem cell transplant recipients.

Some of these side effects are more common than others and some will only affect a small proportion of patients. Many of them happen because of the treatment you needed, either before or after your transplant, including the conditioning therapy. Taking steroids to control your immune system and reduce the effects of GvHD can also cause certain side effects, especially if they need to be taken for a long time. 

Reading about these long-term effects can be daunting and a little overwhelming, especially if you are preparing for, or have recently had a stem cell transplant. While it’s important to plan for future challenges, you might decide it’s better to focus on your own stage of recovery for now and consider these potential long-term effects later.

This section provides information on the following late effects, listed from the most to least common. It’s important that you know what to look out for and how your team will monitor, screen for and treat them. You can also read more in our 7 Steps: The Next Steps booklet (PDF 480KB).

Skin 

You will be at a higher risk of developing skin cancer in later life. This means you will need to protect yourself against the sun’s UV rays. You will need to wear high factor sunscreen and a hat when out in the sun. If you notice any skin changes, particularly in any moles you have, you should have it checked out by your doctor.

The NHS website has help and advice on spotting the early signs of skin cancer.

Cataracts

Cataracts are cloudy patches that develop on the lens of your eye. They can cause blurred or misty vision and make it difficult to do everyday tasks, like driving. It could take a few years for cataracts to develop, so it’s a good idea to get your eyes tested regularly. If you had total body irradiation as part of your conditioning therapy before transplant, there’s a greater chance of cataracts forming compared to chemotherapy alone.

If cataracts start to have an impact on your daily life, they can be easily removed with surgery. The Royal National Institute for the Blind (RNIB) has more information on cataracts and how they are treated.

Bones

There are two main problems that affect your bones.

Osteoporosis (or thinning of the bones) is a common problem for many people as they get older, but it’s more likely to happen after a stem cell transplant. Your risk will also be increased if you needed long-term steroids before your transplant, or to treat GvHD afterwards.

Although it’s generally not painful, your bones become weaker and could fracture easily. A special type of X-ray called a DEXA scan shows the density of your bones and whether you are at risk of osteoporosis.

Fortunately, osteoporosis is often reversible. Being physically active, and taking calcium and vitamin D supplements, can help prevent and treat it. Your doctor may prescribe medication called bisphosphonates that will help too.

Avascular necrosis is when bones in the joints break because of poor blood flow. It’s much less common and mainly affects hip joints, but can also happen in knees, wrists or ankles. It can be very painful and can make walking and other activities more difficult. Medication can help with the pain but most people with avascular necrosis will need surgery.

Thyroid and other glands

Your stem cell transplant could affect the parts of your body that make hormones, including the thyroid, pancreas and sex glands. This means they will be unable to produce the same level of hormones as before.

Roughly one third of transplant patients have an underactive thyroid (hypothyroidism) in the years after their transplant. It can leave you feeling tired, achy and depressed but is easily treated with daily hormone tablets. The symptoms can develop slowly, so your doctor will perform a thyroid function test at your check-ups. This blood test measures the level of thyroid hormones in your blood.

The NHS website has more information on hypothyroidism.

Diabetes occurs when your pancreas doesn’t make enough insulin, which can cause sugar levels in your blood to get too high. If you regularly feel thirsty, tired and pass more urine than usual, it could be a sign of diabetes. Changing your diet may be enough to control your symptoms but you might also need to take insulin daily. Your medical team will test your blood sugar levels regularly and discuss your options with you in more detail.

It’s also common for the glands that produce sex hormones (oestrogen and testosterone) to be affected, which could impact your sex life. You can find more information and advice in our sex and relationships section.

Lungs

Some people experience lung problems after a transplant. They can happen if you have chronic GvHD or if you’ve had a lot of infections during or after your treatment. Lung problems can also be related to the conditioning treatment you had before your transplant.

Possible problems include a dry cough that won’t go away, breathlessness that gets worse, wheezing and fever. Your lung function will be tested at your check-up appointments and an X-ray or other scans may be necessary. If your problems are caused by GvHD you might be referred to a specialist.

You should not smoke after your transplant because you’ll be at risk of long-term chest problems and some types of cancer, including mouth and lung cancers. If you would like help to stop smoking, please visit the NHS Smokefree website.

Heart

Heart problems can affect anybody but there’s a slightly higher risk of developing a heart condition if you’ve had a stem cell transplant. Recent research suggests that around 5-10% of patients experience heart problems in the decade after their transplant.

The initial risk can be reduced through good lifestyle choices, such as a healthy diet and regular exercise. However, you may also be given medications such as beta-blockers or statins to control your blood pressure.

The health of your heart will be monitored at your yearly check-ups. If your medical team thinks you are at risk, they can refer you to a heart specialist. 

Iron treatment

It’s possible for iron to build up in your body, especially in your liver, from having lots of blood transfusions. Your body isn’t very good at removing this iron and it can cause serious health problems if left untreated. Your medical team can check your iron levels by measuring a protein in your blood called ferritin. They may decide to do an MRI scan too.

High iron levels can be treated in two ways:

Venesections: This is when a pint of blood is taken from your body to help remove excess iron. It’s very similar to giving blood and will continue regularly until your iron levels return to normal. 

Chelation therapy:  A drug is added to your blood that is designed to ‘mop up’ excess iron and remove it. More information on this type of treatment is available from the Thalassaemia Society.

Secondary cancers and cancer screening

There’s an increased risk of developing cancer in later life because of the conditioning therapy you had before your transplant. You will be invited to be screened for certain cancers and you should check for any changes to your body regularly. More information on cancer screening is available here.

Information published: 02/09/21
Next review due: 02/09/24

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