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  • Regorafenib

    Regorafenib in glioblastoma recurrence: how to deal with conflicting ‘real-life’ experiences?

  • #2
    I read the article you sent, thank you.
    Is there any new data emerging on regorafenib and recurrent high garde glioma? Unfortunately, my sister progressed on low dose metronomic temozolomide for recurrence of AA IDH1 mutated. Some new lesions appeared on the controlateral frontal lobe as well 3 weeks ago.
    She was anaplastic astrocytoma IDH1 mutated last year. It is not clear now that she is at the 3rd recurrence if it is grade IV or not. She has started a week ago regorafenib 160 mg a day with Dr. Lombardi in Padova and we are waiting to see the next scan results on May 23. So far only rush and extreme fatigue.

    In the mean time she has been contacted by the investigators in Milan of a basket trial of pembrolizumab KEYNOTE-158 because they are reopening Cohort K Brain and Cohort K- Glioma as of 20Mar2020 for additional screening and enrollment. The same institution tested her tumor in 2018 for MSI,
    • Pathology Report (5/4/2018). MLH1 loss of nuclear positivity; PMS2 week positivity conserved; MSH2 focal and weak nuclear positivity; MSH6 loss of nuclear positivity. Immunohistochemistry compatible with MSI (microsatellite instability)
    I am trying to collect all the information and research where she should do in case regorafenib does not work.

    She has been treated since 2014 at Besta Institute in Milan where she did surgeries, radiation, TMZ and cybernife (she is not a candidate for the lomustine + eflornitine trial, too many recurrences but is there any update on the results? Avastin is only available on compassionate base)
    She is now tying regorafenib in Padova.
    She lives in Italy.

    Thank you so much for any info and if there are some patients and caregivers in a similar position I would like to connect.

    Or some center in the US or Europe where I can have an independent virtual consultation via tumor board (either at Duke or somewhere else) please let me know.



    • #3
      Would it be possible to add pembrolizumab to the regorafenib ?
      I would not stop the regorafenib until there is further progression..
      by the way the FDA just approved using pembrolizumab 400mg every 6 weeks instead of the 200mg every 3 weeks.. Makes it a little easier.
      And is Optune availalbe in Italy yet?
      Haven't heard anything about the eflornithine recenlty.
      None of the centers do free remote consultations anymore but most do them for a fee... I hear anywhere from $500-$2,000.
      I like Duke, Celeveland Clinic, UCLA, UCSF, and University of PA and university of Florida... but most of them are going to say to do a trial that they have that requires you to go to them
      We have a webinar this Sunday with Dr Brem - you might want to attend and ask what they are doing.. that is free


      • #4
        Thank you!

        I checked the results of the Keynote 158 trial just published, only 13 patients with GBM. so not enough data to conclude
        Is there a way to know through Merck if they have reported any responses in glioblastoma or AA with MSI-H?
        The trial will reopen and they need to screen her again. I assume the tumor is still MSI-H but I would not suggest my sister to join this trial if they did not have responses yet to pembro yet.
        I know some results with pembro before surgery were reported that caused some excitement but the study was too small.

        Do you consider Optune a reliable option, no neurooncologist in Italy ever mentioned to her.

        Do you know when is the next big neurooncology meeting?

        I will listen to the seminar on sunday.

        Thank you again!!


        • #5
          Drug comapnies would not tell us anything - they communicate via publications..
          Optune is the best treatment we have in the USA. Is it available in your country or just your doctor doesn't like it. Some doctors here still do notlike it.
          The next big meeting is in November but I doubt if it will take place live.. Would be stupid to put every neuro-oncologist in the USA and many from around the world in the same meeting room unless we have a covid19 vaccine that works.


          • #6
            Al, thank you for the answer ! great seminars!