Hi everyone!

My 14 year old son, Eli, has recurrent, metastatic medulloblastoma. The disease is in his bone marrow and bones.

He was first diagnosed in May 2017. He had a resection, 30 rounds of radiation and 7 cycles of chemo (cyclophosphamide, vincristine, cisplatin, premextred and gemcitabine). Eli had no evidence of disease for 2 years.

His recurrence was diagnosed September 2019. He had 2 cycles of temozolomide, irinotecan and avastin before this was stopped due to progression. His CNS remains clear of disease with only bone and bone marrow involvement.

I am now trying to decide between 2 different treatment options. 1) ACT001 (otherwise known as parthenolide). This would be a stand alone treatment that has mixed responses from adult glioblastoma patients. 2) A new trial called SJELIOT which consists of either cyclophosphamide and prexasertib (CHEK1/CHEK2 inhibitor) or gemcitabine and prexasertib. This is a new trial targeted at relapse medulloblastoma.

I am also in touch with Care Oncology Clinic in London but due to Eli's age they can only advise and cannot take him on as a patient.

Does anyone have any advice for me please?