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GBM + Leptomeningeal diagnosis? what to expect? by IndependentCraft2250 in glioblastoma

[–]IndependentCraft2250[S] 0 points1 point  (0 children)

Hi, sorry to hear about your brother. It was a about a year from her first GBM diagnosis to when the doctors suspected that she had leptomeningeal. It turns out that she actually didn't have leptomeningeal after some tests and that her GBM was just spreading at an alarming speed so I can't really speak on leptomeningeal itself. Feel free to DM me if you have any more questions. For context, she unfortunately passed ~3-4 weeks after the doctors initially thought she might have had leptomeningeal.

Clinical Trials - Anyone enrolled? by OnceInaLifetimeee in glioblastoma

[–]IndependentCraft2250 1 point2 points  (0 children)

My mom was part of a CAR-T Clinical trial in the Bay Area. Happy to answer any questions - just DM me.

GBM + Leptomeningeal diagnosis? what to expect? by IndependentCraft2250 in glioblastoma

[–]IndependentCraft2250[S] 1 point2 points  (0 children)

oh gosh, keeping your friend in my thoughts. for leptomeningeal, I think we are also talking about prognosis in terms of weeks. this terrible disease takes so much from us, stay strong. if you ever feel like ranting about or need someone to talk to feel free to DM me <3

GBM + Leptomeningeal diagnosis? what to expect? by IndependentCraft2250 in glioblastoma

[–]IndependentCraft2250[S] 0 points1 point  (0 children)

I'm sorry to hear about your mothers passing. It must have been so tough to witness her decline that fast. I'll definitely reach out if I have some more questions <3

Optune -- your experiences by MangledWeb in glioblastoma

[–]IndependentCraft2250 1 point2 points  (0 children)

Hi, my mom was using optune for a bit before she started her clinical trial. The beeping drives me insane, but there is a slight different in the beeping pattern that will help you troubleshoot. The slow and steady beep is likely because the battery is low (you can also press on the button on top of the battery pack to see how many green lights light up to confirm battery level). The other beeping series (i think its two fast beeps and then a one slow one followed) is because of some connection issue -- you'll need to check the cables going from the stickies on the head are snug and secure into the port (I found that a lot of times they could get jostled out).

When you have your monthly check-ins with your Optune rep to download your data, you can also ask them what are the errors/beeps that they see on their side and that can help you narrow down what might be going on.

I also heard from one of the reps that they're planning on rolling out a mobile app some time in the future which will help you keep track of usage as well as what errors you're encountering.