Chronic lymphocytic leukaemia (CLL)
After treatment
What follow-up do I need?
You will need long-term follow-up. CLL often progresses slowly and people can live for a long time with it, so it is important that you continue to be monitored.
Once you are in remission, you can start to return to your normal life. Some targeted therapies will continue – even when you are in remission – and you will still need to go back to hospital for regular check-ups.
At the start, you will probably have check-ups every month and then every 3 months.
Make sure you understand your follow-up plan and have a phone number to contact if you have any queries.
Follow-up may involve having physical exams and blood tests. Other tests such as bone marrow tests and cytogenetic tests can be arranged if needed.
Ask any questions you have, and to let your doctor know if you are having any problems. Tell your doctor if there are any changes in your body or any new symptoms. You will probably have more bone marrow tests to make sure you are still in remission. It can help to write down what you want to say beforehand, so you don’t forget anything.
If you are between check-ups and have a symptom or problem that is worrying you, call your specialist nurse for advice or to arrange an earlier outpatient appointment if necessary.
Sometimes you may need to go to hospital if you get an infection, as your immune system takes time to recover
If you become suddenly unwell and can’t contact your specialist nurse or hospital team, go to your GP or the emergency department at the hospital.
Why follow up is important
It’s important to go to your follow-up appointments so your doctor can check for signs of the cancer coming back and help with any side-effects that you may have. They can also check for new side-effects that may develop after you have finished treatment. It is best to be aware of these as early as possible so that suitable treatment can be given.
You should go to your follow-up appointments, even if you feel well and have no symptoms, as the tests you will have can spot any changes in your condition.
Life after treatment
The end of treatment is a time when people often expect to feel relieved, happy and able to get on with life again, but it can take some time to adjust and for your body and mind to recover.
People with CLL will continue to be monitored for the rest of their lives and some will remain on targeted therapies even while in remission.
Although many people with CLL can live a normal life, for others, living with CLL and its symptoms can be challenging.
We have information to help you with:
- Side-effects
- Your feelings after treatment
- Living a healthy lifestyle
- Financial and practical matters
LACES after-treatment workshop
Join our Life and Cancer – Enhancing Survivorship (LACES) programme when you have finished treatment or started maintenance therapy.
This workshop covers topics such as diet, exercise, wellbeing, finance and self-management and gives information on support and services to help you.
What if the cancer comes back?
If your CLL starts to cause symptoms again after remission, this is called a relapse. If it did not respond to treatment, this is known as refractory CLL.
Relapsed or refractory CLL can be treated – often with targeted therapies, including monoclonal antibody therapy.
Your haematologist will advise you on what your treatment options are.
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