- They have direct access back to their Principal Treatment Centre, Teenage Cancer Trust Unit (TCTU) or shared care centre 24 hours a day and seven days a week
- They are at risk of life-threatening infection (sepsis), therefore parents/carers are must phone their treatment centre immediately if their child has a temperature above 38oC, or if they are unwell in any way. The Oncology/Haematology Telephone Triage Tool Kit for Children and Young People has been developed as a guideline for the provision of triage assessment and advice for staff answering telephone advice line calls
- They should not receive any vaccines with the exception of the (inactivated) flu vaccine throughout their treatment and for six months after. Once they have been off treatment for six months, they should receive boosters as per the vaccination programme
- They must not receive any non-steroidal anti-inflammatory drugs (NSAIDs), e.g. ibuprofen, diclofenac, unless discussed with their haematology medical team
- They must not receive any rectal medication or have a rectal examination.
- All children and young people with leukaemia up to the age of 25 are invited to join the national leukaemia clinical trial. The trial has three regimens: A, B or C. Within each regimen there are trial arms. Participation is completely voluntary and will be discussed in detail by the medical and nursing team.
- All children and young people start on regimen A or B (depending on age and white count at presentation) and patients on both regimen A and B escalate to regimen C if they are slow to respond/remit; their level of MRD (minimum residual disease) is in the range that indicates benefit for escalation, or if they have poor cytogenetics.
- Treatment lasts around two years for girls and three years for boys.
- All patients have a Paediatric Oncology Outreach Nurse Specialist (key worker) who is contactable via their centre – please contact them with any queries you may have.
- The treatment for common ALL, after the first month, is given on an outpatient basis.
- Children and young people receiving long term therapy may be at risk of an unusual type of pneumonia called pneumocystis (Carinii) jiroveci pneumonia (PJP). This infection is due to an organism which may be present in most people’s lungs. In patients who are on immunosuppressive drugs long term, the infection may be activated. This infection is characterised by fever, tachypnoea (fast breathing) and a dry cough. Some chemotherapy regimens may increase the risk of developing PJP. In these circumstances they will be on a low dose cotrimoxazole (an antibiotic) two or three days a week, throughout their treatment, to help prevent it occurring.
- We anticipate and hope that children and young people will be well enough to attend school or nursery and participate in most normal activities throughout the majority of their treatment.