Follow up for chronic myeloid leukaemia (CML)

Men and women discussing chronic myeloid leukaemia

This page is about follow up appointments for chronic myeloid leukaemia. You can click on these links to go straight to information about

A quick guide to what's on this page
Why you need check ups
How often you will have check ups
What will happen
Coping with worry

Why have check ups?

Your doctor will often be trying to control CML rather than cure it. Even after intensive treatment and a long period of time in remission (being disease free), your leukaemia could come back. So your doctor will arrange for you to have regular check ups. These will continue for several years.

What will happen

At your check ups you will have blood tests and your doctor will want to know how you are feeling. You may have a physical examination as well. Sometimes your doctor may want to do a bone marrow test.

If you are worried or notice any new symptoms between check ups, tell your doctor straight away. You do not have to wait for your next appointment.

Check ups can be worrying

Many people find their check ups quite worrying, especially at first. It may be helpful to tell someone close to you how you are feeling. Having someone come along with you to your check ups may help. It is common for people to have counselling after cancer treatment. To find out more about counselling, look in the coping with cancer section of CancerHelp UK.

CR PDF Icon You can view and print the quick guides for all the pages in the Treating CML section.

In many cases of chronic leukaemia your doctor will is trying to control rather than cure the disease. Your doctor will keep a close eye on you to make sure your treatment is still working and the leukaemia is under control.

Unfortunately, even after intensive treatment and a long period of time in remission (being disease free) there is a possibility that the leukaemia could return. Because of this your doctor will arrange for you to have regular check ups. These will continue for several years.

If your treatment does stop working, your doctor will pick this up very quickly. And there are likely to be other treatments you can try.

When you first start treatment, you may see your specialist every week, or fortnight. If all is going well, you will then see your doctor monthly. Obviously, this will vary according to your particular needs. If you have more advanced CML, or your treatment changes, you will need to see your doctor more often.

Generally, if you are on imatinib your doctor will see you each month to check your blood counts regularly to see how well your bone marrow is working.

You will have blood tests at your check ups and your doctor will want to know how you are feeling. You may have a physical examination as well. Sometimes your doctor may want to do a bone marrow test. You may have blood tests as often as every 4 to 8 weeks.

If everything is going well, the time between check ups will gradually lengthen. If you are worried, or notice any new symptoms between appointments, let your doctor know straight away. You don't have to wait until the next appointment. Your doctor needs to know if there is something worrying you.

Many people find their check ups quite worrying. If you are feeling well and getting on with your life, a hospital appointment can bring back all the worry about having cancer. You may find it helpful to tell someone close to you how you are feeling. If you are able to share your worries, they may not seem quite so bad.

You may prefer to talk to someone outside your circle of family and friends. You could try talking to someone at your local church or place of worship. Or someone at a cancer support group who may have been through similar experiences.

It is quite common nowadays for people to have counselling after cancer treatment. To find out more about counselling, look in the CancerHelp UK coping with cancer section.

Look at the chronic leukaemia organisations page for organisations that can put you in touch with a support group. The general cancer organisations page also has details of organisations who can help you to find sources of emotional support and counselling in your area.

If you want to find people to share experiences with on line, you could use CancerChat, our online forum. Or go through MyWavelength. This is a free service that aims to put people with similar medical conditions in touch with each other.