Does anyone have any experience with getting panobinostat prescribed by a US doctor? Are there any recent studies that might be available to convince our NO to get it for my son? Thanks!
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/NCT02717455 Phase 1 Trial of Panobinostat in Children With Diffuse Intrinsic Pontine Glioma
Sabine Mueller who collaborates with Dr. Monje was doing a clinical trial on panobinostat for DIPG My 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.
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.
What is the tumor of your son ?
ReplyDeleteH3k27 in cerebellum
DeleteYou might try to reach out to Michelle Monje at Stanford.
ReplyDeletehttps://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/NCT02717455
Phase 1 Trial of Panobinostat in Children With Diffuse Intrinsic Pontine Glioma
Thank you !! I wrote to her and she replied instantly!
DeleteSabine Mueller who collaborates with Dr. Monje was doing a clinical trial on panobinostat for DIPG
ReplyDeleteMy 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 olgaph15@hotmsil.com
DeleteThat is what we are trying to do! Could you maybe email me olgaph15@hotmail.com
ReplyDeleteSo 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
DeleteYou can also look under cannabis oil success stories. There is a video of her doctor's appt, with MRI's too.