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My Husband's journey with Glioblastoma

Brain Tumor | Last Active: 5 days ago | Replies (169)

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@hinklda

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!

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Replies to "I am so very sorry for the journey your husband and yourself are currently experiencing. If..."

For now, Sloan Kettering did not have anything to compare with what Duke has to offer. Sloan has a Phase II/III study of Regorafenib Lomustine but Otie is ruled out because he has had two prior regimens of chemo, one of which was Avastin. In my search, I was looking for a Phase II or III trial as opposed to a Phase I. Most Phase I trials are trying to determine what is a safe dosage and frequency of drug to administer. I am hoping for something that has already proven to work----like the Duke D2C7 trial. As of this morning, we still have not heard back from Duke, and we are trying to breathe through the stress and anxiety of waiting.