Chloe Bennett5 said:hello everyone!
I started reading the first part, but honestly? I just can't catch a break. Life's getting in the way and I can't seem to find the time.
So, my mom got hit with a confirmed grade IV IDH-negative glioblastoma (wild type) back in February. She had surgery at Johns Hopkins Hospital, but then just one month later, the follow-up brain MRI showed the tumor is already progressing. Just great.
Had my third surgery back in March. Then, about a month after that second round, they started the chemo combo—radiation plus Temodal. Did a total of 30 radiation sessions over at the Mayo Clinic in Indianapolis.
So, here’s the deal. The recommendation came down to get a brain MRI eight weeks after the last round of radiation, and yeah... the results are in. It shows tumor progression. The neurosurgeon thinks a second surgery is an option, but there's a massive catch. It’s spread to a spot where if they go in now, she’ll end up paralyzed or unable to speak. Because of that, both she and the neurosurgeon have decided to call it quits on a third surgery. They're just not going to do it.
So, the oncologist just decided on the PCV protocol.
Anyone out there have any info on this? Has anyone here actually gone through a protocol like this before?
I can't find much of anything useful online. Seriously, it's like a total dead end.
Her doctor straight up told me she’s never seen anything like this before and didn't have a single clue what to tell me.
thank you all
Sorry about that long-winded post.
Hello, how old is your mom?
My mom’s dealing with wild type too... It comes back fast, way too fast. Honestly, I'm terrified that we're going to be hit with that protocol sooner rather than later, so I really need to get the lowdown on how it all works.
So, I heard that glioblastoma is unfortunately even more aggressive when it hits younger people... That's why I was asking about age.
Good luck to you guys.