My dad diagnosed with Glioblastoma Grade 4 tumor

Posted by keer @keer, Aug 29 5:47am

In April 2026 my dad diagnosed with GBM 5.8×5.6×5.1 and with 2 more small leison he undergone surgery where only few amount of tumor removed after 5 weeks. He took Chemo radiation for 6 weeks cycle. Then doctor gave 1 month gap then did MRI again. Now tumor size is 5.8×4.5×4.2 report says likely residual/recurrent tumor.
Will that size is all of tumor or dead tumor and swelling also included?

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Profile picture for judyandchloe @judyandchloe

@keer my sibling was right side…he had surgery very quickly, 80 per cent removal. However, he has methylated and wild type which is the worst of the worst condition. Did both chemo and radiation and did well with side effects. He is pretty athletic which helps and vegetarian Keto type diet.

I don’t know about his recent mri with a follow up one in about six weeks…he prefers to not upset us but reading between the lines it’s not good. Has been on Keppra since the initial diagnosis which helps.

I don’t think he is eligible for any trials…one has to consider longevity and quality of life…

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@judyandchloe
Hello- my husband has glioblastoma as well. His right parietal tumor is also methylated and IDH wild type. My understanding is that such a combo is a positive thing, not “the worst of the worst.” His tumor has thankfully responded very well to the standard treatment, including the 6 month 5/23 chemo protocol.

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Then, I miswrite-unmethylated..wild type is what my sibling has. Worst news as it doesn’t respond to anything after one round of chemo and radiation. Heartbreak for the family.

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Profile picture for rogersjk @rogersjk

@judyandchloe
Hello- my husband has glioblastoma as well. His right parietal tumor is also methylated and IDH wild type. My understanding is that such a combo is a positive thing, not “the worst of the worst.” His tumor has thankfully responded very well to the standard treatment, including the 6 month 5/23 chemo protocol.

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@rogersjk
After treatment MRI done? What's the tumor size now? Did it gone fully

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Profile picture for keer @keer

@rogersjk
After treatment MRI done? What's the tumor size now? Did it gone fully

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@keer, he’s had three MRIs done since the beginning of April. The first showed that the tumor (70% removed in Oct) had shrunk, and the next 2 showed no evidence of regrowth. I don’t know the precise size, tho.

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Profile picture for keer @keer

@rogersjk
After treatment MRI done? What's the tumor size now? Did it gone fully

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@keer we have to wait until October, first week, to find out

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Waiting is emotional nausea

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Profile picture for kjsthljc1 @kjsthljc1

An article in NY Magazine written by Christopher Cox. It included several Neurosurgeons and researchers at Mass General Cancer Center. I understand the two doctors (Dr. Choi and Dr. Maus) also published their results in the NE Journal of Medicine. The treatment included Car-T cells. I hope this helps.

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@kjsthljc1 thank you!

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Is brain swelling is common in glioblastoma? Steroids has to take regularly?

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My mom passed in march but fought giloblastoma for a year she had swelling and that would mess with her cognitive skills so they would do a round of steroids and she would get better then few weeks we notice her speech wasn’t too good and she wasn’t able to walk as good so they would do another round and that went on for 8 months at the end she had to stay on them cause she had swelling which is the reason they said she wasn’t talking well she had stopped talking completely at the end . My prayers and my heart go out to anyone who has a loved one that they. Are caring for with giloblastoma god be with you all

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Profile picture for asavoie1 @asavoie1

My mom passed in march but fought giloblastoma for a year she had swelling and that would mess with her cognitive skills so they would do a round of steroids and she would get better then few weeks we notice her speech wasn’t too good and she wasn’t able to walk as good so they would do another round and that went on for 8 months at the end she had to stay on them cause she had swelling which is the reason they said she wasn’t talking well she had stopped talking completely at the end . My prayers and my heart go out to anyone who has a loved one that they. Are caring for with giloblastoma god be with you all

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@asavoie1 Did she undergone surgery chemotherapy radiation.

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