r/glioblastoma • u/Ok_Topic_5874 • 10d ago
Current Situation
Hi anyone that reads this. Just getting back from a day of appointments for my mom. Just trying to process everything. So I figured I would put it out here into the void of the internet.
My mom was diagnosed with a glioblastoma back in April. It’s located on her right side, around the temporal lobe. They were able to do a biopsy, but no further surgery was possible.
She completed 6 weeks of radiation and chemotherapy. The side effects really didn’t hit until the last week or so. Following up on brain swelling that was causing some serious symptoms, the doctors prescribed some steroids. We have been back and forth on the dosing. It does seem to help.
She completed her second round of chemo (new cycle of 5 days on and 23 days off at 2x the dose from the previous 6-week round). She handled it well enough with only the first day causing nausea.
About two weeks ago, she started on the Optune device. That has been a hard adjustment for her. The near constant connection to the device limits her mobility on top of the motor issues she is having from the tumor.
Just finished up some appointments with palliative care and the oncology team. She also received her second infusion of Avastin. Her next MRI is in about two weeks.
It just feels like it’s one step forward followed by one or two back. It’s like I can see her slipping away in real time. I just wish that there was something that I could do beyond helping my dad in taking care of her. I wish I could fix it. We had pizza and cake for my birthday after the appointments, and I couldn’t help but think that this would be the last birthday with her.
I don’t know where I’m going with posting this, but it felt like I should at least try to express it somewhere. It’s just been a tough week.
2
u/ButterscotchCivil105 9d ago
Hay un grupo de Facebook para personas con glioblastoma que utilizan Optune, lo conoces? https://www.facebook.com/groups/501703052034572/?ref=share&mibextid=NSMWBT