Tuesday 3 December 2019

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?

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