High grade Glioma - What questions should I ask?

Awesome news for you both! I'm not surgery is an option for me but that's good to hear he's doing well. I'm not looking forward to staying in the Mayo (Phoenix) area for six weeks, but at least it'll be a bit cooler in September, I hope. Just need to figure out the logistics of lodging and transportation. How was your husband during his treatment? Was he able to be independent? I'm probably putting the cart before the horse at this time, but I'd like to know what's realistically possible. I'm hoping my husband can remain in NM and work during the week and maybe visit, or perhaps our daughters who live in Tucson can visit, on the weekends. Too many thoughts running thru the brain. Thanks so much for the support!

@eileen61 I am sorry that your employer is being difficult so soon. I am afraid that I am not much help though. My employers worked with me and I am easily replaced as FMLAs were priority for the float/resource nurses to cover. I did not do much research on the internet because I see on an almost daily basis how misleading it can be. My family/friends were asking when I was first diagnosed so I did go onto the American Cancer Society website to see what treatment options would be, but this still was not enough to know what the plan would be. I took everything one day at a time. Do what you can today to prepare for what may happen tomorrow. I totally understand how it makes you feel out of control. I hope that your treatment goes well and is successful. Please keep us up to date.

Thanks, I'm doing just that. One day as it comes, hopefully I'll have more concrete information and plans after we meet with everyone on Friday.

He had a grand mal seizure back on January 1st and that is what took us to Mayo clinic in Rochester for testing. Since then he has not been able to drive otherwise he's been very independent. The brain surgery to remove as much of the tumor in his right front lobe was very scary, but he recovered from that in a few weeks and then started daily radiation and chemo pills. We are blessed that we only live an hour from Rochester, Minnesota. During those treatments he only had one bad day if vomiting. And he became more tired as his platelets went down, but was still fairly active most days. Sending you our best wishes and many prayers 🙏

Some questions that we asked were:
1. What can we expect for side effects during the radiation and chemo pills?
2. Are there any other options or anything else to consider for treatments?
3. How will we know if the treatments are working?
4. Is it safe to take supplements during treatments?
5. What symptoms to watch for after treatments?
6. We also asked for any clinical trials that might be available and my husband wants to try the Optune, so his oncologist is prescribing that for him too.

Perfect list, thanks! What's the "Optune"?

Thanks, interesting!

In answer to your questions, @eileen61, my husband did amazingly well during his radiation & chemo treatments with very few side effects. He took the prescribed anti-nausea medicine before chemo and didn't get sick. The most notable side effect was hair loss on the left side of his head where they're targeting the tumor area. He had only minor fatigue and continued to work during treatment, thanks to a very understanding, flexible boss. His follow-up MRI is now scheduled for Aug. 30, and we'll meet with the oncologist on Sept. 3 to learn the results. We're very optimistic and hopeful. Our situation sounds very similar to @debraannk's husband, where he feels as healthy as before all this. He's also planning to begin that next round of chemo (pills) after our Sept. 3 appointment, and he'll do that for six months. Regarding where to stay, @eileen61, you may want to ask a Mayo case worker/social worker to assist you with this. I think there's a Residence Inn next door, and there's also a facility that Mayo has, but I don't know much about it. I understand it's always full and a blessing if you're able to get in, but I believe it's for people in your same situation. Check into it!

I'm glad to hear of the relatively few side effects! Hopefully I'll be able to get out and about between treatments or at least on the weekends. I'll be 7 hours from home, so working isn't an option. I guess I'll be looking at it as a 6 week introspective retreat! Better get my Netflix renewed on my tablet! Plus time to consider some healthy lifestyle changes! I think I have an extended stay hotel lined up, plus they have a shuttle that can get me to Mayo if I'm not feeling like driving. I'm looking at this as "Eileen's Big Adventure". Lol. Thanks for the info!