求DIPG 特效药ONC201 与 paxalisib

d
doraxiaozhu
楼主 (北美华人网)
我的外甥刚14岁,得了弥散型内生脑干胶质瘤.   想求助一下哪里可以特效药ONC201 与 paxalisib ? 
occupied lesion in the pons accompanied with compression of bilateral trigeminal nerve and fourth ventricle, and wrapping the vertebrobasilar artery, considering the possibility of glioma such as diffuse intrinsic pontine glioma (DIPG). Left temporal region arachnoid cyst.
 DIPG(Diffuse Intrinsicpontine glioma)或弥漫性内囊桥胶质瘤是一种在脑干区域发现的脑肿瘤,是一种罕见,侵袭性和致命的脑癌类型,主要影响10岁以下的儿童DMG(弥漫性中线胶质瘤)和DIPG(弥漫性内源性脑桥胶质瘤)通常一起分类,但可以有不同的治疗方法,可能导致略微不同的预后路径。大多数诊断发生在5至7岁之间。它占儿童所有脑肿瘤的10-15%,DIPG预后非常不理想,只有不到10%的儿童从诊断后存活两年。   Please let me know if you have any resource/information of USA.
叩谢
d
doraxiaozhu
thanks