High grade Glioma - What questions should I ask?

I was in Phoenix. Got worked up for my CT simulation for proton beam radiation therapy, but am waiting for authorization from the insurance. The chemo meds were mailed to my home in NM. Had a post biopsy MRI which shows things as "stable", which is as good as I can hope for. I'll be driving back to Phoenix on Sunday the 15th, with the intention of starting treatment on the intended day of Monday September 16th. Have my Airbnb reserved for six weeks, so I'm anxious about getting this process underway. (Due to the location of the "big ugly", surgery of any kind was not advised).

Hello eileen61,
I am sorry to hear your diagnosis (grade three anaplastic astrocytoma type of glioma). You also say that the tumor is stable. Stable it's good.
More, this is very good news if you can benefit from a proton beam treatment. This is much less damaging than X-ray radiotherapy. (X-rays burn everything in their path (upstream and downstream of the tumor) whereas proton therapy only targets the tumor). Do not worry about the fact that you cannot remove the tumor by surgery. Sometimes, when it is removed, the tumor returns it pushes back faster (see article: https://www.wired.com/story/cancer-treatment-darwin-evolution/ ). Me too, my tumor is inoperable (but stable). We control it. Since I read this article, I better accept to keep the tumor in my head. As long as it is there and I control it, it does not get worse.
I see that you have come a long way in a few weeks. Bravo! It is a guarantee of healing. I will think of you on September 16th. Do not be afraid, you’ll be fine.

I'm just hoping the insurance authorization comes back in my favor! I hate waiting. Want to get moving forward! Many thanks for the support!

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!

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.

My husband's Glioblastoma that originated in his brain has now metastasized to his spine. He was taken by ambulance a week ago and had emergency surgery to remove a tumor in his neck that was pushing on his spinal cord. He's still in the hospital recovering and he starts 10 days of radiation treatment on his neck today. Has anyone else had their Glioblastoma metastasize? This is very overwhelming to say the least.

Hello, @debraank - I can imagine learning your husband's glioblastoma had metastasized and his emergency surgery and hospitalization were overwhelming.

Apologies for the delay in explaining this, but I wanted to let you know I've moved your post here to where members were talking about various types of gliomas, (which include glioblastoma, as you know). Hoping that members like @eileen61 @marcyprof @pejiota4jack will return to provide some support and share any similar experiences as your husband's glioblastoma metastasis into his spine. I'd also like to invite @bjh369 @tanyabaust @merrijohnson @holly56 to add any thoughts on the situation of a brain tumor spreading.

I'm wondering how your husband is doing now, debraannk? Is he out of the hospital? How is the radiation treatment going?

Thank you so much for replying and moving my post. He is currently back home after a long 16 day hospital stay to recover from the emergency surgery to remove the tumor in his spine in near his 3rd vertabrae. He has since completed 10 additional radiation treatments to his neck and on new year's Eve he had an MRI on his brain and spine and we find out how everything looks tomorrow, January 3, 2020. For having brain surgery and spine surgery within about 6 months, he is actually doing pretty well. He has some right side mobility issues and pain. Hoping for some good news tomorrow ❤️
Deb

@debrannk - Thanks for the update on your husband. So, it sounds as though tomorrow is an important day, with learning about how the MRI on your husband's brain and spine looked.

I'd also like for you to meet @hopeful33250, who has also experienced cancer and may resonate with the treatment as well as waiting for MRI results.

How have the radiation treatments gone for him? Any side effects?

He hasn't had any noticable radiation treatment bad side effects. He is having mobility issues with his legs and the doctors are thinking it may be neurological and might prescribe something called gabapentin. Just hoping for the best news we can get this afternoon regarding his MRI of his brain and spine.
Thank you so much ❤️