CLL can vary from person to person.
For some people the disease never moves beyond the early stages and treatment may never be needed. For others treatment might not have to start immediately. Others might have a form that grows more quickly and need treatment sooner.
Reasons to treat CLL
Treatment is started if there are signs that the disease is progressing or if you develop new symptoms.
Watchful waiting
You may be offered “watchful waiting” as a way of managing your CLL. Under watchful waiting you will have regular blood tests and examinations from your consultant.
CLL is rarely cured by current therapy however the treatment landscape is changing.
Most current CLL treatments aim to slow disease progression down and improve your chances of living well throughout your CLL journey.
Possible reasons to begin treatment include:
- A high-risk or aggressive (grows quickly) type of CLL
- Infections that keep coming back
- Leukaemia that is rapidly getting worse
- Low red blood cell or platelet counts
- Fatigue, loss of appetite, weight loss, or night sweats
- Swollen lymph nodes or spleen
This video from our friends in Leukemia & Lymphoma Society of Canada (LLSC) helps explain Watch and Wait which can also be referred to as Active Surveillance:
How is treatment administered?
Your doctor will determine which way of managing your CLL and what type of treatment is appropriate for you.
There are a number of treatment options for patients with CLL.
With the emergence of new therapies and depending on your prognostic markers, it may be possible to access new Biological therapies, such as ibrutinib, as a first treatment (also known as “front-line setting”) or as a subsequent treatment following Chemotherapy (also known as “second-line treatment”). See our Biological Therapies section for more information.
Chemotherapy, including targeted medicines, are used to treat CLL. See our Chemotherapy section for more information.
In rare cases, radiation is used for painful and enlarged lymph nodes.
Blood transfusions or platelet transfusions may be required if blood counts are low. See our Supportive therapies section for more information.
Bone marrow, or stem cell, transplantation may be used in patients with advanced or high-risk CLL. Your doctor will discuss the risks and benefits with you.
What does treatment do?
The aim of treatment is to stop the bone marrow making abnormal white blood cells.
When this happens, it is called remission and symptoms like tiredness and swollen glands disappear.
Treatment aims to reduce the number of CLL cells to as few as possible, so you can have a normal life with no symptoms. This is called remission.
There are different levels of remission:
- Complete remission (CR) – No CLL cells can be found.
- Minimal residual disease (MRD) – There are so few CLL cells remaining that they can only be found with special blood tests.
- Partial remission (PR) – The number of CLL cells in the blood and bone marrow has reduced and the lymph nodes are smaller, but CLL can still be found.
Treatment is very successful at getting the leukaemia into complete or partial remission in most people. This may last for years. Subsequent (or second-line treatment) options are available and are evolving.
Relapsed and Refractory CLL
Relapsed, or recurrent CLL means the cancer has come back after treatment and reaching remission.
Refractory CLL means the leukaemia did not respond to treatment.
There are a number of treatment options for relapsed and refractory CLL which will be based on the individual’s needs.
You may be offered chemotherapy for Refractory CLL or for Relapsed CLL if the leukaemia had a good response to the using the chemotherapy drugs the first time.
If the disease becomes resistant to the chemotherapy, other drugs may be given.
Giving consent for treatment
A consent form must be signed saying the patient understands what the treatment is for and that permission is given for the treatment to be given.
Before any treatment starts the doctor will explain the aims of the treatment and information should have been provided to explain:
- What the treatment is for
- The type and amount of treatment needed
- The benefits and risks of the treatment
- Any other treatments that may be available
It can be hard to understand everything and so you may need things explained more than once, so let the doctor or nurse know if needs be. It is possible to change your mind after treatment has started, so talk to the doctor or nurse if there are concerns about the treatment plan.