Share Your Brain Tumor type & Years since Diagnosis

Hello everyone,
I was diagnosed with glioblastoma brain cancer last September. I have been fighting ever since with surgery, radiation and chemotherapy. It has not been fun but I am doing the best I can while I'm still alive. I have accepted God's will and will do my best until the time comes. We should all accept our faith and future however it proceeds and pray our families accept our future.

Pediatric High Grade Glioma (Grade 4). Normally 1-5 year olds, but hit me at 43.

Surgery, radiation, 6 months of chemo and looking ok. Its been almost a year ago and slowly getting better.

So its been 3 years overall so far and hoping to keep going!

@coreythomas Hi my 22 year old daughter was diagnosed last December, with Pediatric diffuse type high grade glioma who 4 un methylated wild type. This Friday would finish radiation therapy and temozolamide, her oncologist recommended Optune device,

@hopeforus Hopefully all the treatment schedule has worked for you. Mine was in a spot that was ok for surgery so they took as much as they could before radiation. Chemo wasn't required but I did get it done and super regret it. So many new issues have popped up. The Moffitt visit even said chemo wasn't needed but can help.

Hopefully all the treatment she has had gets her in a good place and the Optune works for her if needed.

This month will mark the 13TH year since my wife was diagnosed with stage 4 GBM. As an instinctive helper, I spent two weeks searching the internet for options. As you also know there isn’t much to find. An article about the keto diet looked interesting . It wasn’t easy, but we followed the diet religiously for five weeks. During that time I tested her blood and saw she was making ketones as intended. When reading the prognosis for GBM patients I decided we should enjoy the time left and travel each month. It was short trips at first. Over the years we toured Costa Rica in a 4 wheel drive, a photo trip in Iceland, toured the Rideau Canal in a houseboat in Onterio Canada, Nashville, New Orleans and many other wonderful trips. Each winter we spent a week in Florida. Twice we happened to be in Titusville and saw two rocket launches. Of course no one can determine with certain why she has done so well. I believe her mental state was a major factor protecting her brain. At no time did we feel helpless. We always had something to look forward to. A couple of time her oncologist credited me for why she is still with us. Unfortunately, recently she has been diagnosed with radiotherapy necrosis. But that’s another story.

My son at 22 was diagnosed with Medulloblastoma in June of 2025, had surgery to remove the big tumor, completed proton radiation and almost complete with cisplatin chemo.

@adrian092
Prayers for you in your journey and recovery

@sorenjal
Prayers for you and your husband

GBM in right thalamus diagnosed in January 2021. TMZ chemo and IMRT radiation completed in 2021. Adjuvant chemo for another year. Also took and still taking fluoxetine per Dr. Paul Mischel of Stanford. Look him up. He has a trial underway to add fluoxetine to the standard Stupp protocol

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.