1. < Brain Tumor

glioblastoma, IDH Wild-type, WHO Grade 4.

Posted by gregzacek @gregzacek, Apr 7 7:15pm

Wife was just diagnosed with glioblastoma, IDH Wild-type, WHO Grade 4. She just had surgery 5 days ago to remove the tumor. I am now looking for treatment options worldwide. Any help is greatly appreciated.

Also looking to start a non-profit orgnization to help others.

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

dewooly58 | @dewooly58 | Apr 8 10:08am

Where are you located? That is exactly my circumstance too but i had two tumors removed. I would recommend contacting a leading research and teaching university medical group. There are several around the country but since I am in the midwest, I have chosen the University of Nebraska Medical Center, Dr. Nicole Shonka. Get started with the one that fits you best ASAP. These gliomas are very fast growing.

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livingit79 | @livingit79 | Apr 8 12:17pm

I would start researching success stories and what/where they went. My son was diagnosis with the same thing. He is now doing chemo and radiation. Rebecca Devine is a woman from St. Paul , MN that was given the same diagnosis as your wife. She is on Facebook and Instagram (thatbrainyblonde) , She has been cancer free for 8 years. She is very open to listen to your story and tell you where she went and what she did after her diagnosis. Please reach out to her or someone else. I would also eat well. Keep on fighting!!!!!

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2 replies
gregzacek | @gregzacek | Apr 8 2:24pm
In reply to @dewooly58 "Where are you located? That is exactly my circumstance too but i had two tumors removed...." + (show)
@dewooly58

Where are you located? That is exactly my circumstance too but i had two tumors removed. I would recommend contacting a leading research and teaching university medical group. There are several around the country but since I am in the midwest, I have chosen the University of Nebraska Medical Center, Dr. Nicole Shonka. Get started with the one that fits you best ASAP. These gliomas are very fast growing.

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We live in norther virginia, so we have a wealth of top rated hospitals and universitys. Thanks for the advise

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gregzacek | @gregzacek | Apr 8 3:16pm
In reply to @livingit79 "I would start researching success stories and what/where they went. My son was diagnosis with the..." + (show)
@livingit79

I would start researching success stories and what/where they went. My son was diagnosis with the same thing. He is now doing chemo and radiation. Rebecca Devine is a woman from St. Paul , MN that was given the same diagnosis as your wife. She is on Facebook and Instagram (thatbrainyblonde) , She has been cancer free for 8 years. She is very open to listen to your story and tell you where she went and what she did after her diagnosis. Please reach out to her or someone else. I would also eat well. Keep on fighting!!!!!

Jump to this post

Ill do that. Its nice to talk to other with the same condition.
Thanks

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gregzacek | @gregzacek | Apr 8 3:21pm

I’m starting a Go Fund Me to help people in the same situation. We are planning to start a nonprofit at some point designed to help with funding as many of the procedures are very pricey that most of the population can only afford by liquidating their belongings or going into debt for a very long time.

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1 reply
adrian092 | @adrian092 | Apr 8 4:16pm
In reply to @gregzacek "I’m starting a Go Fund Me to help people in the same situation. We are planning..." + (show)
@gregzacek

I’m starting a Go Fund Me to help people in the same situation. We are planning to start a nonprofit at some point designed to help with funding as many of the procedures are very pricey that most of the population can only afford by liquidating their belongings or going into debt for a very long time.

Jump to this post

Greg, thank you for sharing your information about your wife. There are lots of doctors in your area, I hope you find the one that helps you most. Lots of research to do as well. I'm in the middle of my chemotherapy at the moment so we'll see how that goes.

Best wishes with you all as you handle your situation as best as possible.

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plousada | @plousada | Apr 9 10:27am
In reply to @livingit79 "I would start researching success stories and what/where they went. My son was diagnosis with the..." + (show)
@livingit79

I would start researching success stories and what/where they went. My son was diagnosis with the same thing. He is now doing chemo and radiation. Rebecca Devine is a woman from St. Paul , MN that was given the same diagnosis as your wife. She is on Facebook and Instagram (thatbrainyblonde) , She has been cancer free for 8 years. She is very open to listen to your story and tell you where she went and what she did after her diagnosis. Please reach out to her or someone else. I would also eat well. Keep on fighting!!!!!

Jump to this post

Boa tarde
Gostaria de saber qual é a Rebecca Devine no facebook, porque há muitas......
Tenho uma grande amiga ao qual foi dignosticado glioblastoma em novembro de 24, já foi operada e fez a primeira sessão de tratamentos que a deitaram muito abaixo. Já nem pode estar sozinha. Tem 66 anos. Pocuro informações. Obrigada

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gregzacek | @gregzacek | 6 days ago

She is on twitter as brainyblondepodcast. Has some good info.

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boilerbob | @boilerbob | 6 days ago

My wife had the same cancer and had surgery on the left front of her brain.
She used the Mayo Clinic in Minnesota to test and select treatment profiles.
She underwent several chemo treatments and 7 weeks of daily radiation treatments a few weeks after her surgery.
Good luck with everything, keep your spirits up, it's a nasty disease.

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