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Caregiver of GBM Survivor of 42 Months and Counting

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  • Caregiver of GBM Survivor of 42 Months and Counting

    I’m Mary, full time caregiver for my husband first diagnosed with GBM April 2016. He had a right parietal lobe craniotomy , radiation, and 18 months of temodar, which at the high dose made him very iill ( lost 75 lbs) but we enjoyed 12 months of stable MRI’s. Medical marijuana was a god-sent helping him get his appetite back, preventing a feeding tube, helping with headaches, and mood. It’s just too bad it seems like big business here in NJ and out of all the states that have approved medicinal marijuana we ( the garden state)are the only one who have not yet approved patients growing their own plant in their home. He had a recurrence Dec 2018 with a wait & see approach by the NOC. February MRI showed more growth and he had 1 infusion of Avastin followed by multiple hospitalizations for most of March & April due to GI issues, severe esophogotis, and left sided weakness. In June he started on BCNU, 3 doses six weeks apart but the Oct MRI showed more progression. This week he got Optune and CCNU however his WBC is low and he has starting experiencing the symptoms of esophogotis again so we’re waiting to start CCNU for a few more days. Remaining hopeful the Dec MRI will show a halt in progression and buy us some more time for a cure.

  • #2
    It might be too soon to look for a halt in progression in December. Take a look at the link below. I asked the doctors at Novocure how long it takes to see a response. IF it works, it takes about 2 months to start shrinking the size of the tumor. The biggest mistake I see is giving up too fast. Use the Optune, and do whatever else you might want to do as the next choice if they think there is progression, but continue the Optune. Try for 90% compliance or better.


    • #3
      One other thing I like is the cocktails: either Care Oncology Protocol or CUSP 9. These are cocktails of repurposed drugs which have been shown to help.


      • #4
        Is there an effective cocktail for atypical meningioma?


        • #5
          I do not think any cocktails have been published about that but I did hear that the Gliovac Vaccine might be useful for recurrent malignant meningiomas. See this is available under the right to try laws, but it might be very expensive.