u/Disastrous-War-3801

(Apologies for tldr ahead)

Hi everyone, many thanks to everyone in this sub and while I’m terribly sorry that so many of us are in the shitty boat of being a patient/caregiver/loved one of someone with GBM, it’s also been extremely helpful to read about people’s experiences. Open to but not necessarily seeking advice, I just wanted to vent and ramble a little bit.

My dad (65, 64 at time of dx) was diagnosed with GBM in January 2025 after he almost crashed his car. Right parietal lobe, wild type unmethylated and no good/useful genetic markers. “Total” resection, Stupp protocol and Optune (~18 hours a day).

His Dec 2025 MRI showed a lesion that was concerning for progression, but a FET-PET scan suggested it was just pseudoprogression / radiation necrosis, so we decided to wait it out. In Feb 2026 he had a re-resection on the recommendation of several specialists because the lesion had grown in size and he had begun showing signs of decline, but the biopsy suggested it was just radiation necrosis as they didn’t find tumor cells.

Unfortunately in April 2026, my dad had a fall, and in the hospital we discovered that he had full blown recurrent lesions in two different spots in his brain. Almost overnight, my dad had gone from walking and talking almost normally to not being able to stand on his own, severe facial droop on his left side, loss of left side motor functions, serious memory loss, etc. He is on a lomustine/Avastin combo now that’s helped significantly with his mobility / left sided weakness and facial droop. He still has some aphasia and memory loss, but not nearly as bad as before. His doctors also recommended that he go back on Optune but he adamantly refuses to, and I can’t fault him for that - it seems excruciating especially since he lives in a tropical climate.

Now we’re trying to figure out what to do next, and it’s been incredibly stressful and exhausting. We’ve been getting second opinions from many doctors around the world but all of them suggest something different. We’re really regretting the re-resection in February now, as we’ve been told he is now unable to have additional surgery (despite the tumors technically being in operable locations) given his age and him already having had a recent re-resection. The immunotherapy / CAR-T trials that he might otherwise be eligible for in his country also require that he not have had a re-resection. I’ve thought about flying him to the US (where I live) or other countries for treatment, but it seems extremely cost prohibitive when it’s not clear how much international treatments would actually help.

Sorry this got so long. I really needed to vent about the awfulness of the uncertainty surrounding this disease - uncertainty around what treatment options to pursue and what various symptoms mean. It’s hard to even feel happy that my dad is doing well on his current treatment because I know how sudden and extreme the next downturn can be. Thank you for reading and seriously fuck GBM!

Hi all,

Thanks in advance for any advice. My partner had his US->HK flight booked for some time now to visit my family, but we’ve recently learned that we need to be in Shenzhen as my father is hospitalized there.

I have dual US/HK citizenship and a Home Return permit (I’m currently already in HK), so going to/from mainland is easy, but my partner is only a US passport holder and doesn’t have a Chinese visa. We’d like to go the TWOV route.

My partner lands in HK International Airport on Sunday. My understanding is that he can go directly to Shekou terminal without going through HK immigration. Will this count as him going directly to the Mainland from the US? This would make things much easier if so since we plan to go back to HK after my dad is released from the hospital.

If not, would you suggest we do TWOV and exit Shenzhen into Macau and then back to HK, or do 5 day VOA? My worry about the latter is that it seems like US citizens have experienced rather frequent VOA application rejections.

Thanks again for any help.