Title : considering other options
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considering other options
Dear all,I again need your advice - currently my son (17 , approaching 18) has a recurrence of his H3K27 glioma, "very low methylation" ( a rather strange phrasing of pathology from UPenn. I would still consider it unmethylated like H3K27 gliomas are) . It is multifocal now and because it involves cerebellum we cant do polio trial or City of Hope Car-T cells. We are currently on Temodar and CCNU and have just finished 10 whole head radiation sessions with Dr.Lederman . We managed to get him ONC 201 earlier, but in September he had bleeding in the brain, so they pulled back ONC201. It was, in my opinion, too early to tell if ONC 201 worked or not. We also had Avastin twice ( before starting ONC201), but our NO won't give Avastn again due to the risk of bleeding. We are also on Keppra and a few CUSP 9 drugs.
We are considering the following options:
1. Just continue with CCNU and Temodar
2. Try getting into adult trial of Val 083 - we had success getting ONC201 being under 18, so we are determined to try getting it now.
3. Try to get ONC 201 again to add to Temodar and CCNU
4. Any other ideas?
I really would appreciate suggestions as to what else we might try - any ideas of other trials? Over the last year we have been completely excluded from any adult trials, but now we are almost at the point where he is almost 18.
Thank you!
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