Dear all,
My son's H3K27 glioma has recurred, in and outside of the original tumor bed. He was treated with ONC201 ( for only about a month or so), and then had a bleeding in the brain. Hence ONC201 was stopped ( even though we are positive it was bot caused by it).
We are looking into radiosurgery and are continuing with sativex, cusp9 etc. Our radiosurgery oncologist thinks Avastin offers the most hope. However, our NO refuses to use it de to the bleeding. He is only willing to do one agent - either Irinotican, or CCNu or carboplatin via port.
We are looking into some other NO willing to do avastin - or is it better to go with carboplatin?
Thank you!
Has your son turned 18 yet? If he has, that would open up the adult trials as possibilities, while still being eligible for many pediatric trials as well.
ReplyDeleteIs the recurrence one contiguous mass, or is it considered to be multifocal? Are all tumors still located in the cerebellum?
Stephen,
ReplyDeleteNo, he is still a few months away from 18, but which adult trial would you think of? We can try to really push like we did with ONC201
It is, unfortunately, multifocal - in the cerebellum again, but also in te temporal lobe.
Thank you!!!!
Avastin is indeed dangerous for bleeding. CCNU and carboplatin are also lowering the platelets causing risk.
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