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Radiation with or without Temodar for Glioblastoma?

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

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@daughterfuturemd

Thank you for your well wishes, @mepowers. I am so happy to hear about your continued remission & wish you the best. Yeah even with GBM patients, I have heard some do not get radiation & instead pursue chemo options such as intra-arterial chemo regimens/pill per day regimens of chemo so I'll be sure to ask his neuro-oncologist all these questions today.

I am curious to hear how they diagnosed your CNS Lymphoma - were the doctors sure it was CNS Lymphoma primarily based on initial MRI scans or was a biopsy/craniotomy required to get tissue samples? We really thought that my dad's lesions could be CNS Lymphoma given his hx of Chronic Lymphocytic Leukemia (CLL), the response/shrinkage in his contrast enhancing lesion after a week of Dexamethasone (prior to surgery), and especially since gliomas and CNS Lymphomas look similar on imaging in immunocompromised patients. However, the path report indicates otherwise - it indicates GBM.

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Replies to "Thank you for your well wishes, @mepowers. I am so happy to hear about your continued..."

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.