Thank you for love, support and sharing your story. It has been good to find this site, but very hard to process. My lovely beautiful sister is 41 years old and was diagnosed with GBM4 2 months ago. She had a re-section and 2 of the 9 tumors were removed. She began Temodar and IMRT Radiation and finished a few weeks back. The follow up MRI showed the remaining tumors have grown together and are a larger mass. She has been on a strict Reduced Ketogenic Diet (RKD) for last 1.5 months. The new Oncologist recommended Avastin, keeping with the Standards of Care. We have been looking into DCA and think it may be a better avenue, especially at this stage. I am fearful after reading about Avastin and what others have experienced. I am under no illusion that this is a curable disease, but feel that we should review all options as Caregivers and be the voice for our loved ones. The Doc approved the DCA script and we found a pharmacist to compound. Kelly began DCA Sunday and Avastin treatment is scheduled for this Thursday. She has lost 25-30 lbs, not sure if this is because the Chemo/Rad took its toll or because of the end stage you all are talking about. She is incontinent and can walk and stand, albeit sometimes unsteadily. Speech is there, but comes and goes, the hazy days... Some days are better than others as you all know. She had one Seizure last week and ER Doc said she should have had more? Not sure if it is because of RKD or not? Has anyone else at this stage done a combination of RKD or a modified Atkins Diet? Anyone tried DCA? Avastin success or regrets? The Oncl claimed to have never heard about DCA or an RKD diet. He did some research and contacted some colleagues at MD Anderson where he previously practiced. A few of them are using it "off the grid" and are aware of it. The University of Alberta study is what many people site as evidence and hope. We have also contacted Dr. Zuccoli about the RKD and his success with his mother's treatment.
I apologize in advance if this is wrong section to post this in. I am new to this and wanted to read/share about the stage we are at and what happens next.
Thank you and much love for you all.