Having a stem cell or bone marrow transplant can have a long term impact on your health and wellbeing, and cause different side effects. Some of these effects can happen months or years later. You may hear these called ‘late effects’ and some are more common than others.
There’s some brief information here about them here, but there’s much more detailed information in The Seven Steps: The Next Steps.
Even though not everyone will get all of these effects, reading about them might be daunting. But there’s treatment and support to help you deal with these side effects.
It is not 100% certain but it is highly likely that the chemotherapy associated with a stem cell transplant means that you will not be able to have children. This can cause distress and feelings of loss of femininity or masculinity for some patients, depending on their age and personal circumstances.
Once you’re recovering, you may want to find out more about your fertility, and explore what options are available to you:
Thinking about your fertility can be hard, and it’s an emotional subject. Talk things through with your partner, family and friends, or find other ways to get psychological support.
Some women do still experience regular periods after their stem cell transplant, so using a method of contraception may also need to be considered. Your medications and other complications could interfere with the effectiveness of the pill. Your transplant team or GP will be able to discuss the different options available to you in more detail
Early menopause can cause your periods to stop and you may have hot flushes and sweats, vaginal dryness, bladder problems, mood changes, difficulty concentrating, and low sex drive. It can also affect your heart and bone health.
Hormone replacement therapy can help maintain your sex drive, sexual function and bone health. You should be referred to a gynaecologist for advice and treatment if you need it.
As well as finding out what medical treatments there are to tackle the physical symptoms, make sure you’re looking after yourself and getting the support you need. The Daisy Network is a charity that supports women who’ve experienced premature menopause.
For more information, see our guide The Seven Steps: The Next Steps.
Graft versus host disease (GvHD) commonly affects the skin and may need particular treatment. Even without GvHD, your skin might be drier and more sensitive, for a long time after the transplant. This is can be an effect of the chemotherapy and radiotherapy and certain medications.
Thinning of the skin and loss of hair follicles can also mean you feel the cold much more than usual, although this usually gets better with time.
You’ll also have a higher chance of developing skin cancer after your transplant. Protect your skin by using high-factor sun creams, avoiding direct sunlight and covering up. If you notice any changes to your skin, let your GP or transplant team know so they can refer you to a dermatologist.
You may lose strength in your muscles, have aches and pains in your joints and numbness and tingling, normally in your hands and feet. Graft versus host disease (GvHD) can cause stiff joints and make your muscles and joints shortened.
Some of these problems improve over time, but referral to a physiotherapist and exercise can also help.
‘I’ve had treatment from a physiotherapist and I try to incorporate stretches into my daily routine so that it isn’t a chore. For example, when I clean my teeth I stand on the edge of the bottom stair with my heels hanging off to stretch out my calves (while clinging on to the bannister with my free hand).’
Alexandra had two transplants. Read about her experiences with GvHD and what life is like for her now.
GvHD often affects the eyes, but even if you don’t have GvHD, your eyes might feel dry, gritty or irritated. Simple eye drops such as hypromellose (or liquid tears) may help to lubricate your eyes and reduce the irritation.
Cataracts are cloudy patches that develop in the lens of your eye. They can cause blurred or misty vision and it may be more difficult to see at night. Cataracts are common following a transplant, especially if you’ve had a type of radiotherapy called total body irradiation (TBI) or steroids during the treatment. You should be referred to an ophthalmologist (eye specialist) for specialist investigations and advice.
The Royal National Institute for the Blind (RNIB) has more information.
It’s common to have symptoms in your mouth for several months after the transplant, even if you don’t have GvHD. Your mouth may be very dry and the taste of food and drink may have changed. In most people these symptoms will get better over time.
Our tips for eating and drinking could also help with mouth problems.
Your teeth and gums can be affected by chemotherapy, drugs, radiation and changes to your diet. You may have more tooth decay than usual. Having a dry mouth may also make cavities more likely.
As well as taking care of your mouth, take care of your teeth and gums by brushing often, not smoking, reducing sugary drinks and visiting your dentist regularly.
There are two main problems which can involve your bones:
Also called thinning of the bones, this is a common problem for people who haven’t had a transplant, and even more common after one. Although generally not painful, the bones are much weaker and, as a result, fractures are more common.
Being physically active, taking calcium and vitamin D supplements, and having hormone replacement therapy if you’re a woman, can help. In some cases, your doctor may prescribe you medications called bisphosphonates.
This is when the bone breaks down due to a restricted blood flow, usually in one joint. Often this is the hip, but sometimes it can be the knees, wrists or ankles. This is less common, but can happen in those who have had a lot of steroids, total body irradiation, or who have graft versus host disease (GvHD).
Avascular necrosis can be very painful and can cause difficulty with walking and other daily activities. Medication can help with the pain, but most people with avascular necrosis will need surgery. Many people will have a good recovery after surgery.
An underactive thyroid means you produce less of the thyroid hormone. It can cause tiredness, constipation, hair loss and weight gain. It’s picked up through blood tests and can be easily treated with medication.
It’s also common for the glands that produce your sex hormones (oestrogen and testosterone) to be affected.
Some people find their bowel habits change after a transplant and don’t go back to normal. You may be more prone to diarrhoea or constipation.
Our tips for eating and drinking may help you manage these symptoms. If you have any new changes in bowel habits, you should report this to your transplant team or GP as soon as possible.
Though less common, you can have problems with your kidneys, bladder, liver, chest, lungs and heart after transplant. It’s important to have regular check-ups and let your doctors and nurses know of any symptoms you’re experiencing.
Find out more about how your team will monitor you for these side effects in our leaflet, Life After Transplant: The Essential Guide to Keeping Track of Your Recovery.
Some people find that they have problems with their memory, attention and concentration after a transplant. You might have heard this called ‘chemobrain.’
Often these problems get better in the year afterwards. For others, the difficulties stay around for longer and have an impact on daily life and work.
‘I’ve found that chemobrain does get better over time – not in all aspects, but in some, and that’s enough.’
Ceinwen had a transplant when she was 20 to treat aplastic anaemia
As you may be aware, the conditioning treatment you had before your transplant causes you to lose the immunity you had from your old vaccinations. This means that you will need to be re-immunised against illnesses such as measles, polio and TB. Women will also need to be re-vaccinated against human papilloma virus (HPV) to prevent the development of cervical cancer in later life. Your transplant team will organise your immunisations for you, usually 6-12 months after your transplant.
If you received total body irradiation (TBI) in preparation for your stem cell transplant, there is an increased risk of developing cancer in later life. This may be anywhere in the body, although it’s more common in some organs such as skin.
The higher chance of second cancers is one of the reasons that we recommend lifelong follow up for everyone who has had a transplant. This includes more regular checks for breast cancer for women. It’s recommended that you are screened annually over the age of 25 or if it has been eight years since your TBI. Although your risk is increased, it does not necessarily mean that you will develop cancer. However if you are screened yearly it will be found earlier, giving you the best chance of treating it successfully.
Current guidelines state that transplant recipients should be screened as regularly as people of a similar age for other cancers such as cervical or colon.
In some rare cases, a different blood cancer can actually develop. The most common form is called PTLD (post-transplant lymphoproliferative disorder). It’s usually caused by the Epstein Barr Virus (EBV), a very common virus.
PTLD can be treated with combinations of chemotherapy, steroids and antibodies. Find out more by reading Lymphoma Association’s information on PTLD.
Information published: 10/10/16
Next review due: 10/10/19