Coping with chronic GvHD

Chronic GvHD can be difficult to cope with. Find out more about how it might affect you and what support is available. 

How long does chronic GvHD last?

The length of time you have chronic GvHD can vary. A lot of people see a gradual improvement over a few months, but for some it can last longer. The average length of time you have chronic GvHD is between 1 and 3 years. Some people can have it for longer. 

Your feelings

Chronic GvHD can be very difficult to cope with, especially when you have been through such a lot of treatment. You might have been free of symptoms before your transplant. So dealing with long term, uncomfortable symptoms after your transplant can be hard to accept.

You might need support during this time. Counselling can help some people. Or you may prefer to talk to friends and family, or other people who have similar problems.

Physical problems of GvHD

Chronic skin GvHD, steroid treatment, eye problems and weight loss can all affect how you look. This might affect your self esteem. And how you think other people see you.

GvHD of the muscles and joints can be painful and affect your mobility. Gentle exercises to improve your range of movement can help. 

You might also feel very tired and lethargic. Or you might be breathless if you have GvHD of the lung. This can make you feel anxious. 

Relationships and sex

The physical and emotional changes you have might affect your relationships and sex life. There are things that you can do to manage this. It might help to tell your partner how you’re feeling about yourself, and what your worries are.

Coping practically

Practical things you and your family might need to cope with include:

• money matters
• financial support, such as benefits, sick pay and grants
• work issues
• childcare

Talk to your doctor or specialist nurse to find out who can help. Getting help early with these things can mean that they don’t become a big issue later.

Where to get help

Getting information about GvHD and your cancer can help you cope, so you know what to expect. You doctor and specialist nurse can give you advice. Try to take some time out to look after yourself. 

There are organisations that can help you with practical and emotional support. For example, Blood Cancer UK.

Blood Cancer UK funds research into leukaemia, lymphoma and myeloma. It also provides patient information booklets and leaflets that you can download or order from their website. 

Support line: 0808 2080 888 

Email address: support@bloodcancer.org.uk