tag:blogger.com,1999:blog-6235733697979948062.post5905366840186659095..comments2024-03-19T00:33:30.191-07:00Comments on our brain tumor cocktails and stories: panobinostatStephen Whttp://www.blogger.com/profile/00777652648990108253noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-6235733697979948062.post-76426578223694434932017-06-29T19:56:48.365-07:002017-06-29T19:56:48.365-07:00Olga, there is a story of a teen whose tumor was n...Olga, there is a story of a teen whose tumor was not responsive to anything else now showing shrinkage after 4 months of cannabis oil use on Facebook tonight. Im not sure if this link will work - https://m.facebook.com/groups/416702921703509?view=permalink&id=1742494495791005 <br /><br />You can also look under cannabis oil success stories. There is a video of her doctor's appt, with MRI's too. Maria Teixeirahttps://www.blogger.com/profile/14187243809258713210noreply@blogger.comtag:blogger.com,1999:blog-6235733697979948062.post-83914308234292115162017-06-27T09:45:09.542-07:002017-06-27T09:45:09.542-07:00H3k27 in cerebellum H3k27 in cerebellum Olgahttps://www.blogger.com/profile/11120446936756490575noreply@blogger.comtag:blogger.com,1999:blog-6235733697979948062.post-55315148551486553882017-06-27T09:44:30.193-07:002017-06-27T09:44:30.193-07:00Thank you !! I wrote to her and she replied insta...Thank you !! I wrote to her and she replied instantly!Olgahttps://www.blogger.com/profile/11120446936756490575noreply@blogger.comtag:blogger.com,1999:blog-6235733697979948062.post-92064824242211658932017-06-27T09:43:51.315-07:002017-06-27T09:43:51.315-07:00That is almost our situation! Could we touch base ...That is almost our situation! Could we touch base ? My email olgaph15@hotmsil.comOlgahttps://www.blogger.com/profile/11120446936756490575noreply@blogger.comtag:blogger.com,1999:blog-6235733697979948062.post-37591154257740336812017-06-27T09:42:50.204-07:002017-06-27T09:42:50.204-07:00That is what we are trying to do! Could you maybe ...That is what we are trying to do! Could you maybe email me olgaph15@hotmail.com <br />So we can "compare notes"? Thanks Olgahttps://www.blogger.com/profile/11120446936756490575noreply@blogger.comtag:blogger.com,1999:blog-6235733697979948062.post-44036155755421571832017-06-27T08:44:40.435-07:002017-06-27T08:44:40.435-07:00Sabine Mueller who collaborates with Dr. Monje was...Sabine Mueller who collaborates with Dr. Monje was doing a clinical trial on panobinostat for DIPG<br />My son has been on panobinostat since Feb. but looks like recurrence already even with Keytruda every 3 weeks. <br />We are looking at the oncoceutics clinical trial<br /> clinicaltrials.gov/ct2/show/NCT03134131 which targets that H3-K27 mutation which my son has (along with some others) in his Diffuse Mid line glioma.freecellhttps://www.blogger.com/profile/00079766141690802713noreply@blogger.comtag:blogger.com,1999:blog-6235733697979948062.post-19912455964666057132017-06-26T17:01:36.439-07:002017-06-26T17:01:36.439-07:00You might try to reach out to Michelle Monje at St...You might try to reach out to Michelle Monje at Stanford. <br />https://med.stanford.edu/news/all-news/2015/05/existing-drug-may-treat-the-deadliest-childhood-brain-tumor.html<br /><br />(as context for others reading this post, the tumor in question is an H3 K27M mutant cerebellar astrocytoma, the same mutation often found in DIPG)<br /><br />https://clinicaltrials.gov/ct2/show/NCT02717455<br />Phase 1 Trial of Panobinostat in Children With Diffuse Intrinsic Pontine Glioma<br />Stephen Whttps://www.blogger.com/profile/00777652648990108253noreply@blogger.comtag:blogger.com,1999:blog-6235733697979948062.post-21332651576812463062017-06-26T13:55:33.485-07:002017-06-26T13:55:33.485-07:00What is the tumor of your son ?What is the tumor of your son ?SVGhttps://www.blogger.com/profile/06622761974790805847noreply@blogger.com