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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This gives me some hope. My husband is 77. Diagnosed in January, this year, with stage 4 glioblastoma. Had surgery and starts radiation and TMZ tomorrow. He mall walks, but feeling more tired. Can do the stairs and showers without help. Speech a bit slurred and some short term memory loss. Great appetite. Has virtually no medical history other than borderline high blood pressure and slightly elevated cholesterol. He was told 12-18 months. Looking forward to milder weather so we can walk outside more.
Yes. One day at a time. Praying for you and your husband.

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Profile picture for leg1945 @leg1945

My husband was diagnosed with glioblastoma stage 4 wild rose in November 2024. At that time he was given 6-9 no the to live. Resection of the tumor left a small nodule with too many blood vessels to remove. MGMT was minimal. Radiation and Temodar started in January 2025. After radiation and initial dosage of Temodar has been doing 28 day cycles 21 days on and 7 days off. Tolerates it well. Had gamma knife on remaining nodule in July 2025. MRI in November had no tumor growth. MRI on March 10 small enhanced area probably from radiation. He is doing well just needs to be more active. Some speech aphasia and short term memory loss. He turned 77 in January. We take it a day at a time and are waiting for warmer weather so we can get out more.

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@leg1945, such an encouraging story to hear. No tumor growth sounds good. Does your husband like to walk outside if the weather is warmer?

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MRI from March 10 showed a small are that wasn't there in November. After review by tumor board it is felt to be recurrence. We were told it couldn't be in a better place for Gamma Knife. Will have procedure within next couple of weeks. We continue a day at a time.

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Profile picture for rosebud1981 @rosebud1981

I just found out 2 days ago I have a brain tumor called Ninengioma in the right frontal lobe and possibly MS! It’s 9mm, or .345, or 3/8 inches! It’s tiny! I hope they can take it out through my nose! I’m getting ready to visit a new Neurologist clinic and I will know more! I’m so sad and scared! Thanks! This is my first post!✝️✝️✝️✝️✝️

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@rosebud1981 how are you doing now? Did you have it removed? How old are you? I was just diagnosed with meningioma with edema and calcification on left frontal anterior lobe and want to remove it by craniotomy. Never heard of ninengioma?

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Profile picture for reginamyers1958 @reginamyers1958

It came on gradually. I was diagnosed with a tiny meningioma when I was 45. Neurosurgeon said “nothing to worry about” and made no mention of followup MRI’s. I divorced when I was 55, so naturally I thought I was depressed. The apathy emotion was a gradual thing for sure. Big meningioma discovered at age 64. Very thankful for a top notch neurosurgeon from OSF in Peoria.

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@reginamyers1958 how are you doing now? I was just diagnosed last December with meningioma with edema. Did follow up mri last week. Waiting for my follow up visit with neurosurgeon this week.

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Profile picture for Colleen Young, Connect Director @colleenyoung

@leg1945, such an encouraging story to hear. No tumor growth sounds good. Does your husband like to walk outside if the weather is warmer?

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@colleenyoung He had MRI on March 10 which showed small recurrence. Gamma Knife scheduled for April 1. TMZ stopped and will start Lomustine. Also restarted Avastin. He does not walk outside much anymore but stIll does enjoy mowing the lawn.

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I had craniothomy on March 5. It is glioblastoma 4 wild type. Still waiting for radiotherapy and Temodal, six weeks reccommended. I am functional and I am grateful for that but having some psihological issue to deal with diagnosys since no major symptoms were present

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Hello. I’m new to this group. I have been diagnosed with Cushing’s disease in 2025 and have a very tiny pituitary adenoma that I’m having surgery on at the end of April because my cortisol levels tend to be high. I’m not the typical Cushing’s patient I’ve been told and I happened to stumble upon this diagnosis. I’m glad so that I can get this taken care of and get my cortisol under control. I chose to have this done at the Mayo Clinic as they rank very high in dealing with pituitary tumors.

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Profile picture for daki @daki

I had craniothomy on March 5. It is glioblastoma 4 wild type. Still waiting for radiotherapy and Temodal, six weeks reccommended. I am functional and I am grateful for that but having some psihological issue to deal with diagnosys since no major symptoms were present

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@daki I’m glad to hear you are functional and understand that other issues associated with your condition can be challenging. Praying for you…and your family 🙏🏾

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Hi, I was diagnosed w glioma in 2009, not p119q deleted but more recently found out that I AM IDH positive. Had radiation and Temodar back then. Had craniotomy in Nov of 2025 & am trying the IDH inhibitors but my neutrophils get too low. Always hopeful other new treatments will present themselves.
Glad to have this group!

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