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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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as72 | @as72 | 6 days ago
In reply to @daki "I had craniothomy on March 5. It is glioblastoma 4 wild type. Still waiting for radiotherapy..." + (show)
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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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@daki
Hope you are recovering and doing well. did you know it was glioblastoma prior to craniotomy? Be well.

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luvcats | @luvcats | 2 days ago
In reply to @justk "I was diagnosed with a hemangiopericytoma in June 2017. I had surgery in July 2017 and..." + (show)
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I was diagnosed with a hemangiopericytoma in June 2017. I had surgery in July 2017 and they removed as much of the tumor as they could. In November/December I received 6 weeks of proton beam radiation. My first follow up MRI was in April 2018 and there was no new growth. My next MRI will be in October.

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@justk
My husband had a hemangiopericytoma 40 years ago which invaded nasal bone & surrounding tissue. He had multiple surgeries until clean bone & skin margins could be obtained. I am RN so was able to take him home in between pathology days. He did such a great job with his skin flap. I had to slowly take him out to mall to show him no one was staring at him. After first surgery I could tell was returning ( mid diagnosed). So took him elsewhere. I believe he had 4 gig of radiation3xweek for about 2 months . We are Blessed it has never returned. We declined bone graft surgery. I was frightened the skin flap wound not heal again at the time. He hasn’t had a reoccuranceWe were blessed with a good MD & prayers as we were so much younger. Now at 70’s I am dealing with a missed inoperable skull based tumor. Will write a seperate post after holiday!

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daki | @daki | 1 day ago
In reply to @as72 "@daki Hope you are recovering and doing well. did you know it was glioblastoma prior to..." + (show)
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@daki
Hope you are recovering and doing well. did you know it was glioblastoma prior to craniotomy? Be well.

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@as72 I had some opinions of radiologyst that is glioma of high gradus. I understand that MRI shows a lot. Final confirmation was after craniothomy.

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judyandchloe | @judyandchloe | 1 day ago

My younger brother recently got a diagnosis of stage 4 glioblastoma. Told the tumor is in a “good place” for removal…hoping to have LITT treatment. At Mayo Clinic-gets the neurononcologists final diagnosis this afternoon - sees the neurosurgeon on Thursday. Our family and brother are on pins and needles waiting for the “word” today. Praying for many years of life ahead.

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mavish | @mavish | 7 hours ago

My hubby in the hospital waiting for a biopsi. His symptoms started less than a month ago and progressed rapidly.MRI indicates glyoma it is 7×4 cm inoperable, due to location and size. I appreciate to hear other's experiences.

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