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My Husband's journey with Glioblastoma
Brain Tumor | Last Active: Oct 21 5:20pm | Replies (174)Comment receiving replies
On January 6, 2021, I contacted the Cleveland Clinic, Duke, the Mayo Clinic, Sloan Kettering, and Mass General. A phone call from Duke on January 7 is what led us to visit them. We live in Cortland, NY, so it certainly is not close to home. A lot of the other clinical trials I read about excluded people who had been on Avastin. After hearing details about this D2C7 trial and that folks participating are still alive and well after five years with glioblastoma is very encouraging.
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I am so very sorry for the journey your husband and yourself are currently experiencing. If you are in New York I don’t understand why you aren’t scheduled for treatment at Sloan Kettering?
Last February while in the hospital in Las Vegas, my glioblastoma was discovered. I contacted the Huntsman Cancer Institute in Utah while I was still in the hospital and scheduled surgery to remove as much as the tumor as possible. After the surgery i began the journey of radiation treatments with Temodar. That ended in May and then I started the stronger dose of Temodar for 5 days every 28 days till December. I flew to Utah for every month to check in with my doctor at Huntsman and get a MRI scan ever other month. Because the tumor has never appeared on those scans since the surgery, I can finally cease taking Temodar and simply fly to Utah every two months to continue with the MRI scans for the next two years.
I just wanted to share my long journey so far with you to give you hope. It also is critical to grow stronger spiritually, physically and nutritionally. It is very important to take care your whole well-being during this time and beyond. My prayers are with you!