No announcement yet.

spread to pons

  • Filter
  • Time
  • Show
Clear All
new posts

  • spread to pons


    A family member has been living with a grade 2 brain tumour for more than a decade, when it recurred as a GBM a couple of years ago (IDH1 mutated, MGMT-methylated). After surgery it recurred again a few months ago, with very rapid decline, so rapid that we couldn't get him into a trial in time, and opted for re-irradiation and Avastin. This produced a few months of strong improvement, and I think in this circumstance Avastin saved his life, even though I know it doesn't have a good reputation on the survival front. But now it has recurred again and seems to have appeared in the brainstem, causing different but increasing symptoms.

    Avastin use and brainstem recurrence seem to be an obstacle for trials as well as adding OpTune. We looked at DCVax but even ignoring the cost, the barriers to getting it are very high (must be done in UK, surgery must be performed with intent other than just for getting a sample for DCVax -- the surgeons won't operate now...). I know about the ONC201 trial, but that is for DIPG, and this is not a brainstem glioma but a cerebral glioma probably metastatic to the brainstem. Does anyone have any other ideas for trials and cocktails we could use or access to compassionate release drug? Is it worth getting FoundationOne testing on the 2017 resected GBM or would the tumour have moved genetically too far for that to help with choosing off-label drugs?


  • #2
    I am not positive but I think testing the old sample wouldn't help much. I am a big fan of Optune, but not for tumors in the region of the Pons. They are doing some experimental work on treating that area but it is not practical yet. The electrodes have to be places around the throat which may be uncomfortable.
    It might be worth trying for onc201. You have to try to get into the clinical trial first and they most likely would reject you, but then you can try for compassionate use. We (the Musella Foundation) fund the onc201 compassionate use program and we collaborate with a few other organizations to run it. I do not make any decisions.. but contact the team: You can also ask the team to search for other treatments.
    As far as off labels go, without the genetic testing to help narrow it down, it may be best to try one of the tested cocktails such as the care oncologoy protocol or cusp 9.