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High grade Glioma - What questions should I ask?

Brain Tumor | Last Active: May 2 7:18pm | Replies (58)

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@eileen61

Hello all! Well, it's been a whirlwind lately. I finally was authorized for Proton Beam Therapy and tomorrow marks treatment #30! Tonight is the last dose (#42) of oral chemo! I'm finally going home from Phoenix! Six weeks is a long time to be away from home. Good news, I made it thru the 6 weeks with the help of family and friends. My seizures haven't surfaced in over three weeks either! Lucky the extreme fatigue hadn't hit until this past week. Bad news, I lost a ton of hair from the radiation but I'm assured it'll grow back, but extremely slowly. Taste buds are way off, so food tastes very bland and I'm suffering from a ton of gi gas and reflux. But... that's it! I can deal with that! In two weeks I hope to be back at work, in a light duty capacity. Won't know till several MRIs over the next months and a few more 5 day doses of chemo to see if this treatment plan has worked. I know it's not curative, but more of a controlled plan in hopes of buying myself more time than was outlined in the statistics. Mayo has been great, I'm in several research studies that won't actually help me, per se, but maybe could help others. I'm very appreciative of all the effort that has been extended to myself and my family during this journey. Stay positive, people!

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Replies to "Hello all! Well, it's been a whirlwind lately. I finally was authorized for Proton Beam Therapy..."

What a pleasure to read you, Eileen61! Thank you for sharing your hopes with us. I'm so glad you could have proton therapy. Of course, this cancer is incurable, as you say, but if we can have time before us, we come back to the same condition as the others; time is all we humans have on this earth. And I see that you enjoy it fully. I am happy for you, for me. We learn to live, even in illness. I wish you happy years, full of joy and well-being, surrounded by those we love. Affectionately, C.