Monday 26 June 2017

panobinostat

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!

8 comments:

  1. What is the tumor of your son ?

    ReplyDelete
  2. 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

    ReplyDelete
    Replies
    1. Thank you !! I wrote to her and she replied instantly!

      Delete
  3. 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
    clinicaltria​ls.gov/ct2/show/NCT0​3134131 which targets that H3-K27 mutation which my son has (along with some others) in his Diffuse Mid line glioma.

    ReplyDelete
    Replies
    1. That is almost our situation! Could we touch base ? My email olgaph15@hotmsil.com

      Delete
  4. That is what we are trying to do! Could you maybe email me olgaph15@hotmail.com
    So we can "compare notes"? Thanks

    ReplyDelete
    Replies
    1. 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.

      Delete