What is the tumor of your son ?
H3k27 in cerebellum
You might try to reach out to Michelle Monje at Stanford. https://med.stanford.edu/news/all-news/2015/05/existing-drug-may-treat-the-deadliest-childhood-brain-tumor.html(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)https://clinicaltrials.gov/ct2/show/NCT02717455Phase 1 Trial of Panobinostat in Children With Diffuse Intrinsic Pontine Glioma
Thank you !! I wrote to her and she replied instantly!
Sabine Mueller who collaborates with Dr. Monje was doing a clinical trial on panobinostat for DIPGMy son has been on panobinostat since Feb. but looks like recurrence already even with Keytruda every 3 weeks. We are looking at the oncoceutics clinical trial 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.
That is almost our situation! Could we touch base ? My email firstname.lastname@example.org
That is what we are trying to do! Could you maybe email me email@example.com So we can "compare notes"? Thanks
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 You can also look under cannabis oil success stories. There is a video of her doctor's appt, with MRI's too.