1. < Brain Tumor
Profile picture for jstow07

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

Interested in more discussions like this? Go to the Brain Tumor Support Group.

Profile picture for jeanneoc
jeanneoc | @jeanneoc | Aug 8 11:38am
In reply to @rened "Husband has GBM cancer and is now 15 months post diagnosis. He had immediate surgery, 6..." + (show)
Profile picture for rened @rened

Husband has GBM cancer and is now 15 months post diagnosis. He had immediate surgery, 6 weeks of radiation and chemo pills, then major chemotherapy, and is now doing targeted therapy treatments every other week. So far so good. The targeted therapy has helped the cancer and his MRIs are so far showing no cancer in the tumor bed.

Wondering if anyone else is suffering from Glioblastoma and what treatments they’re doing?

Jump to this post

@rened

REPLY
Profile picture for jeanneoc
jeanneoc | @jeanneoc | Aug 8 11:39am

Sent a book title because author has GBM - can also find her video in the Radical Remission website. Ideas are complimentary to traditional treatments and nothing too extreme. Hope this is helpful 🫂❣️

REPLY
1 reply
Profile picture for judyandchloe
judyandchloe | @judyandchloe | Aug 8 12:29pm
In reply to @rened "Husband has GBM cancer and is now 15 months post diagnosis. He had immediate surgery, 6..." + (show)
Profile picture for rened @rened

Husband has GBM cancer and is now 15 months post diagnosis. He had immediate surgery, 6 weeks of radiation and chemo pills, then major chemotherapy, and is now doing targeted therapy treatments every other week. So far so good. The targeted therapy has helped the cancer and his MRIs are so far showing no cancer in the tumor bed.

Wondering if anyone else is suffering from Glioblastoma and what treatments they’re doing?

Jump to this post

@rened I wish I could say what’s helping my brother-he has the worst of the worst gbm …had his post op MRI at Mayo in Scottsdale…I’m dreading the diagnosis. I’m sure if it were positive I would have had a better honest call. He is very stoic…

REPLY
Profile picture for rened
rened | @rened | Aug 8 3:38pm
In reply to @jeanneoc "Sent a book title because author has GBM - can also find her video in the..." + (show)
Profile picture for jeanneoc @jeanneoc

Sent a book title because author has GBM - can also find her video in the Radical Remission website. Ideas are complimentary to traditional treatments and nothing too extreme. Hope this is helpful 🫂❣️

Jump to this post

@jeanneoc
This book sounds great!
Think both my husband and I would like to read it.
Thanks so very much!!

REPLY
Profile picture for lizziegsb
lizziegsb | @lizziegsb | Aug 9 4:48am

Hi.. I was diagnosed with a GBM (aka my Blasted Glioma) end Sept ‘24 … they said the ‘Average’ survival was 13-15 months - well, I’m 22 months and counting - but I say Being ‘Average ‘ never was on my list of ambitions …..

REPLY
1 reply
Profile picture for lisamg
lisamg | @lisamg | Aug 9 1:12pm

My 70-year-old husband had a glioblastoma tumor removed in January of 23. He had a recurring tumor removed in June of 25. He has had 2 rounds of radiation and chemo. He has recently had a stroke. I am hoping for someone’s opinion on how they have dealt with helping cope. I feel like I am at a total loss of what to do. My husband has a very difficult time speaking. Often I don’t understand what he is trying to tell me. I often get “I don’t know “ to any question that I have. Any help out there would be much appreciated. Thanks

REPLY
Profile picture for jeanneoc
jeanneoc | @jeanneoc | Aug 10 12:11pm
In reply to @lizziegsb "Hi.. I was diagnosed with a GBM (aka my Blasted Glioma) end Sept ‘24 … they..." + (show)
Profile picture for lizziegsb @lizziegsb

Hi.. I was diagnosed with a GBM (aka my Blasted Glioma) end Sept ‘24 … they said the ‘Average’ survival was 13-15 months - well, I’m 22 months and counting - but I say Being ‘Average ‘ never was on my list of ambitions …..

Jump to this post

@lizziegsb

REPLY
Profile picture for jeanneoc
jeanneoc | @jeanneoc | Aug 10 12:11pm

Everyone is an individual and we have our own lifestyles & different treatments ❣️🙏🫂🫂

REPLY
Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | 16 hours ago
In reply to @ddiane "@rened Thank you for sharing. My husband has the same type, grade 4. He had the..." + (show)
Profile picture for ddiane @ddiane

@rened Thank you for sharing. My husband has the same type, grade 4. He had the majority of the tumor 90% removed on July 23rd. So just the beginning of the long journey. We see oncology on Monday but it sounds like he will be having 6 weeks of radiation and chemo pills just as you did. He has speech therapy, OC, and PT for now and that is going well. I'm glad to hear his MRIs are showing no tumors.

Jump to this post

@ddiane, how did the appointment with oncology go? Has your husband started radiation and chemotherapy? How are you doing?

REPLY
1 reply
Profile picture for Corey Thomas
Corey Thomas | @coreythomas | 7 hours ago

FYI from my last post here about pediatric cancer at 43. It was doing well but flipped and grew fast. So Mayo has removed a much larger area of brain, ran through radiation, and just started chemo pills again.

So far, I'm ok. Mostly dealing very little short memory and lots of how it lost names to things. It kinda stinks not remembering things, but I am here!

I will keep an eye on it all soon with more scans and hopefully kept this slow. 🙂

Old reply:
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!

REPLY
Please sign in or register to post a reply.