Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We truly appreciate your support and words of hope and encouragement as we fight this horrible disease. Thank you for visiting.
I was diagnosed with Glioblastoma Multiforme (GBM) in late November of 2018. The initial symptoms were a lack of strength and coordination in my left arm. The results of that first MRI were a shocker to say the least!
The first step was to see the oncologist who helped me through my fight with breast cancer. She checked me into the hospital and ran various tests before ordering brain surgery to biopsy the tumor. The biopsy confirmed the Glioblastoma. Family, friends and my oncologist encouraged me to seek out possible clinical trials and second opinions on treatment. This led to a trip to New York City and Memorial Sloan Kettering hospital. There we consulted with Alexandra Miller, MD, PhD, a Neuro-Oncologist who specializes in primary brain tumors. She spent quite a bit of time with us explaining the current "standard of care" and what to expect. She was involved in a clinical trial but I was not an appropriate candidate. She referred us to her colleague, Dr. Kathryn Nevel also a Neuro-Oncologist. Dr. Nevel had recently completed a fellowship at MSK and had moved back to Indianapolis to work and teach at IUHealth.
Dr. Nevel took my case and partnered with Dr. Gordon Watson, a Radiation Oncologist to start my treatment. That treatment consisted of three weeks of radiation treatment along with oral chemotherapy. After this treatment, I had several weeks off everything before the next MRI. That MRI showed that the treatment shrunk the tumors by about half which was a very good sign.
Current treatment now includes 5 days of chemotherapy at a higher dose followed by 25 days off, weekly blood draws, and an MRI every two months. So far no additional growth has been detected. Just recently, I started using the Optune device https://www.optune.com
). This is an electronic device consisting of multiple electrodes worn on my shaved head that is designed to disrupt the cancer cells and keep them from multiplying. It's a bit cumbersome but it has a proven record of extending survival rates.
Please keep checking back - I'll try to provide regular updates.