tag:blogger.com,1999:blog-6235733697979948062.post507920996293723509..comments2024-03-19T00:33:30.191-07:00Comments on our brain tumor cocktails and stories: Urgent help needed - Butterfly Glioblastoma Stephen Whttp://www.blogger.com/profile/00777652648990108253noreply@blogger.comBlogger1125tag:blogger.com,1999:blog-6235733697979948062.post-28274811577953693672020-09-16T11:07:50.847-07:002020-09-16T11:07:50.847-07:00I'm sorry for this situation, and especially n...I'm sorry for this situation, and especially not being able to get treatments due to COVID lockdown. This is the first time I've heard of a glioblastoma patient not getting treatment for that reason, and it isn't right.<br /><br />Yes I think given the speed of growth, you should try to get her a round of chemo even if she isn't ready for radiation. Chemo might not be as effective as the combination of radiation + chemo, but at least it is something and is better than nothing.<br /><br />I'm not sure about the availability of drugs in India, but either temozolomide (the standard GBM drug) or lomustine (CCNU) can be effective in this type of tumor (IDH1-mutant glioma).<br /><br />Just so you are aware, Ben Williams (see the book Surviving Terminal Cancer) also had a IDH1-mutant glioblastoma with lots of residual tumor left after surgery. He had radiation plus chemo (CCNU and BCNU as this was back in the 1990s before temozolomide was approved). He combined chemo with other drugs and found his tumor was highly responsive to the chemo - complete response.<br />https://virtualtrials.com/surviveben.cfm<br /><br />We will never know for sure but perhaps one of the drugs he was taking, such as verapamil, in addition to the chemo was a factor in his response. It was due to Ben's story and inspiration that this blog exists.<br /><br />Unlike some types of tumors that are resistant to chemo, the most proven treatments for this type of high grade IDH-mutant tumor are conventional radiation and chemo. They typically have lower immune activity than non-IDH mutant GBM and might not be as responsive to immune therapies such as checkpoint inhibitors. I hope you find some of this info helpful. Stephen Whttps://www.blogger.com/profile/00777652648990108253noreply@blogger.com