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Radiation with or without Temodar for Glioblastoma?

Brain Tumor | Last Active: Jun 1, 2020 | Replies (10)

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@mepowers

My diagnosis was difficult until I hit Mayo. I live in Albuquerque. My primary care sent me to every specialist except an oncologist. Everyone of them said that something was wrong but it wasn’t in their silo. My primary got me into Mayo Clinic. Again, my nasty insurance company was denying my ability to see a Neurologist. I saw a wonderful endocrinologist at the clinic. She said my life was in jeopardy and admitted me to Mayo Hospital. She said once admitted, my insurance company couldn’t deny anything. Within 48 hours the doctors at Mayo diagnosed me. I had many tests. They were on to something when they did the MRI with contrast. My brain had swollen over the hemisphere. Ultimately, I had a brain biopsy to confirm diagnosis. I spent over 3 weeks at the Mayo hospital in Phoenix. I had one infused Chemo and two biologic treatments there. They set up my protocols and found a hemo-oncologist to treat me in my home state. In 2016, I spent over 70 days in hospitals. I can’t tell you how great they are at Mayo. That was way more than you asked...the short answer is brain biopsy! :). My current oncologist says she loves this protocol and thinks the Temodar was a great added to high dose Methotrexate.

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Replies to "My diagnosis was difficult until I hit Mayo. I live in Albuquerque. My primary care sent..."

@mepowers Thanks for your response. I appreciate the insight. Given my dad's history of CLL, there was high suspicion for a high grade glioma vs. CNS Lymphoma since high grade gliomas and CNS lymphomas in immunocompromised individuals looks very similar on imaging. And with him already being a leukemia (CLL) patient, I was convinced that lymphoma was a greater possibility than GBM. On top of that, there was significant swelling around his tumor, so he was placed on high dose steroids (dexamethasone) prior to surgery and those steroids not only seemed to help with the surrounding swelling but they also shrunk the contrast-enhancing region of the tumor quite a bit so it was just appalling when the pathology post tumor resection showed evidence of GBM instead of CNS Lymphoma. But I guess it is what it is... Now we know what it is and are working with the staff at Mayo to get him the best treatment possible. I agree with you - the staff/care team at Mayo is truly incredible. We are all thankful & blessed to be able to access them despite these crazy times around us.