Share Your Brain Tumor type & Years since Diagnosis

@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

@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.

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.

One day in work I started to have terrible migraines out of nowhere. And then suddenly I lost complete vision in my left eye. Was sent to ED and they done a MRI. Discovered a tumor and within an hour they transferred me to Beaumont. Had more CTs and MRI in Beaumont and they confirmed an 8cm x 3cm x 9cm tumor. 2 days later I had a craniotomy. 1 day in the high dependency unit, 2 days on a general ward and home for recovery. Called me with the results yesterday and it was a meningioma grade 1. Male 34 years old.

@steve2026
glad it was grade 1 and you are recovering.
Where is Beaumont, California?

@steve2026
I have one, but mine has not grown. So glad it wasn’t cancer. Hope your recovery goes well. Scary I know!

@steve2026
WOW - that was fast!

In 2003 I lost a lot of my short term memory. Things I had done at work for years that was just second nature was gone! Asking me something was gone instantly. My personality changed. I even forgot to eat. Couldn’t remember if I had! Then the headaches (worse than any migraine I’d ever experienced) came and went. I just tried to write them off. But 8 months later I fell in the shower boy it hurts doesn’t it. Things started to fall apart at work. I made mistakes because now I wasn’t able to comprehend the simplest of things. Finally after all this it took great persuasion to get an MRI done. We didn’t and still don’t have very good physicians where I live. I got my MRI on a Friday on Monday morning at 10am I got a call from my doctor that I had a brain tumor
I am one of the lucky ones my brain tumor(S) were benign just located on the memory part of my brain. My memory isn’t much better as of late but those Hemangiomas are goners

My husband was diagnosed at first with meningioma. A month later at his neurosurgeon’s follow-up appointment we were hit hard with final results (4/14/26) glioblastoma with sarcomatous features. He was referred to an oncologist (appt date: 5/6/26, where another MRI/PET scan was ordered. He has an appt for 5/21/26 for imaging. It breaks my heart that his treatment is being delayed. Researching this dx, I’m learning this tumor is an aggressive type tumor. Any advisement would be appreciated…

@judyandchloe, Tried sending photo of a book I found inspiring- A Case For Hope by Jennifer Dickenson Galuzza.
Complementary to traditional medicine and very reasonable- best wishes!!🙏🙏🙏🫂🫂❣️