A trial looking at treatment for children and teenagers with a primitive neuroectodermal tumour that has come back (PNET-CNS 2000 01)

The trial team found that high dose chemotherapy was of little benefit for children and young people with primitive neuroectodermal tumours (PNETs) in the brain that had come back.

This trial included 45 children and young people who had a PNET that had come back.  Of these, 40 had the most common type of PNET called a medulloblastoma and 5 had a rarer type called a supratentorial PNET.  Most of them had previously had radiotherapy.

In this study, the planned treatment was cyclophosphamide and surgery or radiotherapy if appropriate. If this got rid of all or most of the cancer (put it into complete or nearly complete remission), the children and young people taking part could go on to have high dose chemotherapy.

Of the 5 children who had supratentorial PNET

• All 5 started cyclophosphamide chemotherapy
• 4 had surgery before having cyclophosphamide
• 1 went on to have high dose chemotherapy  and radiotherapy

Unfortunately all of their tumours continued to grow and sadly they died.

Of the 40 children with medulloblastoma

• All had cyclophosphamide
• 19 also had surgery
• 22 went on to have high dose chemotherapy

The researchers found that the average length of time they lived was just over 1 and half years.

After an average follow up period of nearly 7 and half years, 37 children had sadly died. The trial team concluded there was little benefit in giving high dose chemotherapy to children whose primitive neuroectodermal tumour had come back.

We have based this summary on information from the team who ran the trial. The information they sent us has been reviewed by independent specialists (peer reviewed ) and published in a medical journal. The figures we quote above were provided by the trial team. We have not analysed the data ourselves.