Late effects after a stem cell transplant

What are late effects after transplant?

Late effects after stem cell transplant are potentially long-term physical side effects. Some of these side effects are more common, while others only affect a small number of people.

Many late effects happen because of your treatment, either before or after your transplant, including conditioning therapy. For example, taking steroids to control your immune system and help relieve symptoms of graft versus host disease (GvHD) can cause certain side effects, especially if taken for a long time.

After having a stem cell transplant, you may have access to a ‘late effects’ clinic run by clinical nurse specialists (CNS). These nurses have a huge amount of experience in the needs of stem cell transplant recipients.

Skin cancer

As a late effect, people who have had stem cell transplants are at higher risk of developing skin cancer in later life. You will need to protect yourself against UV rays by wearing high factor sunscreen and a hat when out in the sun.

If you notice any skin changes, particularly in any moles, you should see your doctor. For more information, help and advice on spotting the early signs of skin cancer, visit the NHS website.

Cataracts

Cataracts are cloudy patches that develop on the lens of your eye. You might experience blurred or misty vision which makes it more difficult to do everyday tasks, like driving.

It could take a few years for cataracts to develop after your transplant, so it’s a good idea to get regular eye tests. If you had total body irradiation (TBI) as part of your conditioning therapy, you’ll generally be at greater risk of cataracts than if you had chemotherapy alone.

If cataracts start to affect your daily life, you can get a simple surgical procedure to remove them. For more information, visit The Royal National Institute for the Blind website.

Bone conditions

As for potential late effects on your bones, there are two main conditions:

Osteoporosis

This means the thinning of your bones. Many people experience this as they get older anyway, but it’s more likely after a stem cell transplant, especially if you took long-term steroids before your transplant or afterwards to treat GvHD. 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 your bone density and helps doctors decide if you are at risk. You might be

able to prevent, treat and reverse the effects of osteoporosis by being physically active, and taking calcium and vitamin D supplements. Your doctor may also prescribe you types of medication called bisphosphonates.

Avascular necrosis

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

Gland problems

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

Thyroid problems

Roughly one third of transplant patients have an underactive thyroid in the years after their transplant. You might hear this called ‘hypothyroidism’.

As the symptoms can develop slowly, your doctor will perform a thyroid function test at your check-ups. This test measures the level of thyroid hormones in your blood. An underactive thyroid can leave you feeling tired, achy and depressed, but doctors can easily treat it with daily hormone tablets.

For more information on hypothyroidism, visit the NHS website.

Pancreas problems

When your pancreas doesn’t make enough insulin, the sugar levels in your blood can get too high – this is called ‘type 1 diabetes’.

You might have signs of type 1 diabetes if you:

• regularly feel thirsty and tired
• find you pee more than usual.

Changing your diet can help manage your symptoms, but you might also need to take insulin daily. Your medical team will regularly test your blood sugar levels and discuss your options in more detail. For more information on type 1 diabetes, visit the NHS website.

Sex glands

It’s quite common to experience a late effect on the glands that produce the sex hormones oestrogen and testosterone. If they produce less of these hormones, it could affect your sex life. For more information and advice, visit our information on sex after a stem cell transplant.

Lung problems

Some people experience lung problems as a late effect after a transplant. This can happen if you have chronic GvHD or have had a lot of infections during or after your treatment. Lung problems can also relate to the conditioning therapy you had.

Possible problems include:

• a dry cough that won’t go away
• breathlessness that gets worse
• wheezing
• fever.

Doctors will test your lung function at your check-up appointments, but you might also need an X-ray or other scans. If GvHD has caused these lung problems, your doctors might refer you to a specialist

Heart problems

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. Research suggests around 5 to 10% of people experience heart problems in the decade after their transplant.

Doctors will check your heart health at your yearly check-ups. If your medical team think you’re at risk, they can refer you to a heart specialist.

You can help to reduce the initial risk through good lifestyle choices like a healthy diet and regular exercise. However, you may also get different medications such as beta-blockers or statins to control your blood pressure. You can read more about these medications on the NHS website.

Kidney problems

Acute kidney injury (AKI) is associated with early side effects, meaning within the first 100 days after transplant. But in terms of late side effects, chronic kidney disease (CKD) is a type of problem to look out for.

If you develop CKD, it means your kidneys don’t work as they should, and you might need to have ongoing treatment. Doctors should test your kidney function at your annual check-ups and can diagnose CKD through testing your blood or pee.

If you develop a long-term kidney problem after transplant, you may need to go back into hospital for treatments like dialysis. This is when your blood passes through a machine to filter it, clean it and return it to your body. For more information about CKD, visit the NHS website.

Excessive iron levels

It’s possible for iron to build up in your body, especially in your liver, from having lots of blood transfusions. Your medical team can check your iron levels by measuring a protein in your blood called ‘ferritin’ or doing an MRI scan.

Your body isn’t very good at removing this iron, but it can cause serious health problems if left untreated. Doctors can treat high iron levels in two ways:

Venesections

This is when doctors take a pint of blood 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

Doctors add a drug to your blood that is designed to ‘mop up’ excess iron and remove it. For more information on this type of treatment, visit the Thalassaemia Society website.

Secondary cancers and cancer screenings

You’ll be at an increased risk of developing cancer in later life because of the conditioning therapy you had before your transplant. As the risks vary from person to person, we recommend discussing this with your medical team.

You will get screened for certain cancers, but it’s important you regularly check for any changes to your body. For more information, see our page on cancer screening.