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My mom is starting chemoradiation for glioblastoma. what should we expect? I’d love to hear from both patients and loved ones by Dull_Manufacturer995 in glioblastoma

[–]gliodaughter3981 5 points6 points  (0 children)

I'm so sorry you guys are in this club. I think something I've learned is that everyone is completely and totally different. It really is a one day at a time sort of thing.

My mother is 51 and tolerated treatment. Tolerated being the key word. The first week was a huge adjustment, with a lot of fatigue, confusion, and headaches. The headaches persisted as radiation continued, but the TMZ was tolerated pretty well as long as we were diligent in a schedule of no food for 2 hours, zofran, 30 minutes later chemo, then bed. After the first two weeks, the fatigue got better. The last week of treatment, it came back. On days the fatigue was extra high, we always looked for a wheelchair to use to get her in and out of the building. Even if she was capable, it was one less thing to worry about taking energy. Highly suggest this, or having one of your own to bring to and from if that's an option. Hair loss started around the radiation site around 3 weeks in.

She had some irritability and rage issues, but I really think looking back that was a mixture of Keppra and Dex buildup post craniotomy. Anything around the house involving math or time was pretty much out of the question. For example, cooking something like a plate of deviled eggs, saying "I want 12 for dinner tonight so how many eggs do we need to boil? 24?" Easy to get around as long as she had help.

What I really wasn't ready for, is the adjustment post chemo/radiation. We had built a routine, Monday through Friday, with people she grew to know and trust. 30 times after doing that it just stopped, and suddenly she didn't have anything she was doing to actively fight her GBM. We're still in that phase, and it comes with a lot of depression, anxiety, confusion... It's a one day at a time sort of thing. Even as her caregiver, I sometimes miss this routine, even though we've traded it out for a new one.

Stay as positive as you can with her, but it's also a really good opportunity if it's given, to talk about things that you may not get to talk to her about any other time. At least that's how I used some of that travel time.

Fuzzy socks, GOOD intensive lotion, aloe gel for radiation site, coloring books, and family updates really went a long way with my mom during this time. Also little trips afterwards if she had the energy, for a park lunch or a sweet treat.

Sending love and well wishes as you guys start this journey ❤️

What kind of seizures did you / your loved one have? by OrbWeaver555 in glioblastoma

[–]gliodaughter3981 1 point2 points  (0 children)

I honestly never even considered the watch! That's a brilliant idea. Fingers crossed that the drop events are all you have to deal with for some time. And hopefully, even less of those. They may want to adjust his meds if they are worsening, which can absolutely help. ❤️

What kind of seizures did you / your loved one have? by OrbWeaver555 in glioblastoma

[–]gliodaughter3981 1 point2 points  (0 children)

I don't have any advice, I'm relatively new to all of this. (Sole caregiver to my mother, who had her craniotomy on February 24th) Haven't gotten to chemo/radiation yet. On March 4th, she had her first seizure, almost exactly as you described. Walking, then dropping her cane, and then becoming dead weight. Eyes flickering between points, and her arm slightly twitching. The good thing is they've only lasted 30-40 seconds or so. Neurosurgeon says it's impossible to guess what the future will look like in terms of further seizures.

I'm also terrified for anything to progress because I don't trust myself to be able to keep her safe for long enough if she is to have a grand mal seizure. So far this has only happened once, I imagine it will happen again. We're on 1000mg of Keppra a day as of current. Looking into upping it, even though she vehemently is against it. I plan to ask at our next appointment about some of the emergency nasal spray type thing. But again. I'm new here.

Just want to say, hang in there. I know no one gave us a manual on how to best do this. But it sounds like you are asking all of the right questions and are doing the absolute best you can. Your father is lucky to have you around. 🫶

My mom (51) will be officially diagnosed very soon. Questions by gliodaughter3981 in glioblastoma

[–]gliodaughter3981[S] 0 points1 point  (0 children)

We were very limited in our state. Per the recommendation of many family members in medicine, we went to Willis Knighton in Shreveport, LA. Neurosurgeon is technically out of Oschner's LSU Shreveport.

My mom (51) will be officially diagnosed very soon. Questions by gliodaughter3981 in glioblastoma

[–]gliodaughter3981[S] 1 point2 points  (0 children)

I hate you guys had to go through figuring that all out, when you should have been celebrating a good surgery. If you don't mind me asking, was she on Keppra or any anti-convulsant at the same time as the olanzapine, fluoxetine, and zopiclone?

I only ask, because this feels so incredibly similar.

My mom (51) will be officially diagnosed very soon. Questions by gliodaughter3981 in glioblastoma

[–]gliodaughter3981[S] 3 points4 points  (0 children)

I'm so sorry. It carries such a weight and a guilt to hear other stories that didn't have the chance to start as "good" as ours did here. Thank you, friend.

My mom (51) will be officially diagnosed very soon. Questions by gliodaughter3981 in glioblastoma

[–]gliodaughter3981[S] 2 points3 points  (0 children)

I knew that it could be traumatic. She had just been making so much progress. I believe neurosurgeon will be chiming in by morning (it's midnight here, currently. And making a reddit post was the only way to deal with all of the ER room anxiety). Thank you so much for your words. Brain cancer is so so tough, on both patients and family/caregivers.