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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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Colleen Young, Connect Director | @colleenyoung | Sep 2 11:32am
In reply to @ddiane "@ddiane sorry pressed something and sent an unfinished reply. But to answer your other question, husband..." + (show)
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@ddiane sorry pressed something and sent an unfinished reply. But to answer your other question, husband has been in the hospital since the 11th with unrelated health issues and hope is to return home tomorrow. So no radiation or chemo yet.

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@ddiane, I hope your husband's other unrelated health issues have resolved and that he is able to start treatment. Thinking of you.

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ddiane | @ddiane | Aug 21 8:30am
In reply to @ddiane "@colleenyoung Thank you for reaching out to me. The day was a long day for him..." + (show)
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@colleenyoung Thank you for reaching out to me. The day was a long day for him but the doctors were very informative and knowledgeable. our daughter came with and asked about many related treatments and questions.
They answered all of them honestly with no judgment.
There is a trial we can qualify for where the radiation is administered slowly in small pulses instes

Jump to this post

@ddiane sorry pressed something and sent an unfinished reply. But to answer your other question, husband has been in the hospital since the 11th with unrelated health issues and hope is to return home tomorrow. So no radiation or chemo yet.

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ddiane | @ddiane | Aug 21 8:21am
In reply to @colleenyoung "@ddiane, how did the appointment with oncology go? Has your husband started radiation and chemotherapy? How..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

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

Jump to this post

@colleenyoung Thank you for reaching out to me. The day was a long day for him but the doctors were very informative and knowledgeable. our daughter came with and asked about many related treatments and questions.
They answered all of them honestly with no judgment.
There is a trial we can qualify for where the radiation is administered slowly in small pulses instes

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1 reply
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Corey Thomas | @coreythomas | Aug 21 5:37am

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!

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Colleen Young, Connect Director | @colleenyoung | Aug 20 8:56pm
In reply to @ddiane "@rened Thank you for sharing. My husband has the same type, grade 4. He had the..." + (show)
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@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.

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

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jeanneoc | @jeanneoc | Aug 10 12:11pm

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

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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)
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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 …..

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@lizziegsb

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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 …..

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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)
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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 🫂❣️

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

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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?

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@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…

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