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Share Your Brain Tumor type & Years since Diagnosis

Posted by jstow07 @jstow07, Aug 8, 2018

Hey everyone I was diagnosed almost 7 years ago with a medulloblastoma in my right cerebellum. Completely removed followed by proton radiation. No reoccurrence since. Just curious what everyone else has and how many years and treatment

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cabinlady | @cabinlady | 4 days ago
In reply to @colleenyoung "@cabinlady, that's a lot of cancers. Your husband sounds like a real warrior. What helps him..." + (show)
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@cabinlady, that's a lot of cancers. Your husband sounds like a real warrior. What helps him get through these diagnoses and challenging treatments emotionally? How are YOU doing in your important role as caregiver and supporter?

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@colleenyoung

Hi Colleen, my husband has been very fortunate to have his kidney cancers stay stable. When i found out about his stage 4 Glioblastoma tumors I could hardly breathe. One of the things I think that helps my husband is that he has No idea his prognosis. I told all his doctors they are Not to tell him. I don’t want him to just focus on that. He just finished 3 weeks of radiation & 155 mg Temozolomide. In 1 month he has his CT & MRI for his kidney cancers & 2 months for MRI of his brain tumor. We have walked everyday, all winter long & now into spring. I try to keep his spirits high. We will celebrate our 50 anniversary this June. He has a lot of prayer coming at him. I met a lady that told me her husband lived 4 good years! I will take that, or a little more!!! He will be 73 in June

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ndn1 | @ndn1 | 3 days ago
In reply to @jeffpaeste "Jeff was diagnosed with Grade 4 glioblastoma (GBM), IDH-wildtype and MGMT-unmethylated, in December 2025. The tumor..." + (show)
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Jeff was diagnosed with Grade 4 glioblastoma (GBM), IDH-wildtype and MGMT-unmethylated, in December 2025. The tumor was identified after he suffered a grand mal seizure on December 21, 2025. Prior to this, he was in excellent health and maintained a very active lifestyle. Following the seizure, he was hospitalized for 24 days, including 11 days in the ICU.

His tumor is considered inoperable. Following his diagnosis, he experienced significant left-side weakness that affected his strength, mobility, and balance. His short-term memory, cognitive function, and vision were also impacted. Through 7 weeks of physical and occupational therapy, along with 5 weeks of cognitive therapy, he has made meaningful progress. He is stronger now, his movement has improved, and his memory and cognitive abilities continue to get better.

He completed 30 sessions of radiation and chemotherapy (TMZ) on April 8, 2026. We will be traveling to the Mayo Clinic to explore additional treatment options, and he is expected to begin Optune Gio with TMZ in May. I am also in communication with two clinical trials and praying he will qualify.

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@jeffpaeste what clinical trials are you hoping to get into? Only asking because I’ve been diagnosed with GBM gone through surgery to remove the tumor then 3 days later had emergency surgery to stop a brain bleed and to remove more of the tumor, 40 rounds of radiation while taking TMZ and 6 rounds of high dose TMZ. Now on the GIO wearing it everyday over 90% of the time.

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mamita1931 | @mamita1931 | 1 day ago

I was diagnosed with a Meningioma Tumor located on the right side of my brain, between the scull and the brain tissue.

I had a MRI done back in June 2025 after I complained about headaches, blurred vision and some times trouble speaking and walking.

Since I don’t have a job for the last four years due to many other health issues, I have only seeing a neurologist and I can’t afford to see a neurosurgeon whom I was asked to see regarding my case.

Lately I’m have been dealing with anxiety and moods changes, I’m only 55 years.

I was told it’s rare that a male my age was diagnosed with it, but it can happen.

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