Tuesday, 6 September 2016

Avastin decision

I am very confused after two discussions with my daughters NO regarding Avastin and am seeking opinions.
First discussion he said to try to get Avastin through insurance, this wasn't possible as not licensed in the UK for GBM.
So we said we would try to raise money to finance. NO then said he wouldn't use Avastin as her recurrence was diffuse and he didn't think it would work as well as it does for solid tumors or edema, and that it could make things worse.
He also said trials show it doesn't work with children or young adults.
We are now unsure weather to go ahead with Avastin or not? Where can you get impartial advice?
We know it isn't a cure and there are pros and cons like a lot of medications.


  1. There hasn't been many clinical trials or studies of Avastin for pediatric glioma, and most of these do indicate less activity than for adults. In one single institution study of 12 pediatric high grade gliomas (10 supratentorial plus 2 DIPG), there were two patients with a partial response after the first MRI. 2/12 (17%).

    Avastin is an anti-angiogenic drug that targets VEGF, a pro-angiogenic growth factor. One sign of rapid angiogenesis in gliomas is contrast enhancing tumor visible on MRI with contrast (gadolinium). Is there contrast enhancing tumor, or is it all diffuse now?

    How is CUSP9 (minus auranofin) going? Have you or her NO reached out to Marc Halatsch in Germany (the lead investigator in the upcoming CUP9 trial). Any luck finding someone to administer intravenous vitamin C in the UK?

    1. There is a small amount of contrasting tumour, but mostly diffuse.

      Mark was on leave when I emailed him, so haven't started CUSP9 yet as I felt a bit daunted trying it on my own. My daughters NO is not very up on the cocktail approach.
      We are starting a trial run by a clinic in London tomorrow which just involves four drugs(two of which she already takes). Metformin, Doxycycline, alternated every three months with Mebendazole and Atorvastatin.

      Still hunting IV vitamin C and Perillyl, I won't give up trying to source.

    2. I contacted Medicor regarding Perillyl alcohol and they said they've stopped using it as it didn't show the results they'd hoped. They are now using DCA.

    3. Stephen,
      Can I just check, are you saying Avastin works best if recurrence is solid tumour as opposed to diffuse?

    4. Given its mechanism of action, I do think it's likely Avastin is most effective in contrast enhancing tumor areas where the most angiogenesis is happening, and less effective for diffuse/non-enhancing tumor.

      "The volume of enhancing tumor decreased significantly after start of bevacizumab therapy and remained low until progression."

      "Non-enhancing tumor was visible and definable in all
      patients. The volume of non-enhancing tumor did not
      decrease significantly after start of bevacizumab therapy, and under therapy, it remained relatively constant
      until the time point of progression."

      "The volume of edema decreased significantly after start of bevacizumab therapy and remained unchanged during follow-up with a trend to increase at progression."


      The observations from this study support the idea that Avastin (bevacizumab) can reduce the contrast-enhancing tumor and edema, but have little effect on non-enhancing (more diffuse) tumor area.