Treatment for childhood acute lymphoblastic leukaemia that has not gone away with treatment or has come back

Leukaemia that does not go away with treatment is called refractory leukaemia. Leukaemia that comes back after treatment is called relapsed disease.  

It can be more difficult to treat relapsed or refractory acute lymphoblastic leukaemia (ALL). But there are treatments available. And researchers are looking at how to improve treatment for children living with ALL that hasn’t gone away, or has come back.

What does treatment depend on?

The treatment your child has depends on a number of factors including:

• what type of ALL your child has

• where the leukaemia can be found such as in their bone marrow, fluid around the brain and spinal cord or testicles

• if the leukaemia came back when they were on treatment, or how long ago they finished treatment

• your child’s age

• if your child has gene changes (mutations) or proteins to the leukaemia cells

• what treatment they have had before

Treatment options

Your child’s doctor may recommend one or more of the following:

• chemotherapy
• a stem cell transplant  
• targeted cancer drugs such as blinatumomab. Less commonly they might have inotuzumab ozogamicin
• CAR T-cell therapy 
• radiotherapy to the testicles or surgery to remove them
• treatment as part of a clinical trial

Your child’s consultant will talk to you about the treatment available for your child. They will give you detailed information and allow you plenty of time to ask questions. We have information on all open clinical trials looking at treating childhood ALL on our clinical trials database.

Chemotherapy

Chemotherapy is the use of anti cancer drugs to destroy cancer cells. The chemotherapy drugs circulate throughout your child’s body in the bloodstream. All children also have chemotherapy as an injection into the spine (intrathecal chemotherapy ).

Your child may have had some of these chemotherapy drugs before or they might be new to them.

You child might have one or more of the following:

• vincristine

• daunorubicin

• methotrexate (intrathecal chemotherapy). If they are unable to have methotrexate they might have cytarabine instead

• peg-asparaginase

• mitoxantrone

• mercaptopurine

• nelarabine

• cyclophosphamide

• cytarabine

Targeted cancer drugs

Targeted cancer drugs work by targeting the differences in cancer cells that help them to grow and survive. 

Your child might have a type of targeted cancer drug called a monoclonal antibody . The following are monoclonal antibodies your child might have:

• blinatumomab (Blincyto)

• inotuzumab ozogamicin (Besponsa)

• daratumumab

If your child has a certain genetic changes they might also have imatinib. Imatinib is a type of cancer growth blocker called a tyrosine kinase inhibitor (TKI) . If your child can't have imatinib they might have another type of of TKI. Some others include:

• dasatinib
• nilotinib
• ponatinib

Stem cell transplant

Your child has a stem cell transplant after high doses of chemotherapy and other treatments such as radiotherapy to the whole body (TBI). 

Having a transplant means destroying as many leukaemia cells as possible and replacing these with healthy stem cells . This is an intensive treatment.

CAR T-cell therapy

CAR T-cell therapy is a type of immunotherapy. CAR stands for chimeric antigen receptor.

CAR T-cell therapy is a very complex and specialist treatment. Your child has this treatment at a registered CAR T-cell therapy hospital with healthcare professionals who have the expertise to look after them.

T cells move around the body to find and destroy defective cells. When you come into contact with a new infection or disease, the body makes T cells to fight that specific infection or disease.

With CAR T-cell treatment, a specialist nurse collects your child’s T cells or a donors T cells. These are then sent to the laboratory where a change is made to the T cells to become CAR T-cells.

After a few weeks your child has a drip containing these cells back into their bloodstream. The CAR T-cells then recognise and attack the cancer cells.

Some children and young people up the age of 25 years have a type of CAR T-cell therapy called tisagenlecleucel (Kymriah). It is for a type of leukaemia called B cell acute lymphoblastic leukaemia (B cell ALL). They might have it for one of the following situations. Their cancer:

• hasn’t gone away with 2 cycles of treatment
• has come back (relapsed) following a stem cell transplant
• has relapsed 2 or more times
• hasn’t gone away after their first treatment
• had gone away with treatment, but it’s come back, and chemotherapy isn’t working now
• has come back once but they can’t have a stem cell transplant because either they aren’t well enough, or they don’t have a donor

Scotland, Wales and Northern Ireland

Your child might be able to have CAR T-cell therapy if they are in Scotland, Wales and Northern Ireland. However, they have to travel to England to one of the specialist treatment centres for CAR T-cell therapy.

Radiotherapy

Radiotherapy means the use of radiation, usually x-rays, to treat cancer. Doctors use a type of radiotherapy called external beam radiotherapy for acute lymphoblastic leukaemia in children.

Your child might have radiotherapy to:

• the whole body (total body irradiation, TBI) as part of conditioning treatment for a stem cell transplant

• their testicles if leukaemia cells are found there

• the head

Coping with ALL that has come back or is not going away

Finding out your child’s leukaemia has come back or has continued to grow is devastating. Some people find that talking about how they’re feeling helps. It’s okay to ask for help.

There is lots of help and support for you and your family. Being with your child while they’re having treatment in hospital for an extended amount of time can be very hard. It’s both emotionally and physically hard for you and all the family. It’s normal to be anxious and worry about what is happening or might happen in the future. Emotional and psychological support is available in most children’s cancer units or through community nursing teams. This support is for children, parents or carers.

Try and have time out for yourself. This can feel difficult for many reasons, including not wanting to leave your child alone in hospital. It’s important that you have some rest too and you look after yourself.