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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Menginoma diagnosed in 2005.
2019 two strokes because it stsrting growing. 2029 Gamma knife to stop the growth didn't work and emergency surgery was done to remove the tumor which was a grade 1 cancer. Have recently had another stroke.

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We found a brain tumor in 2015 when I volunteered to be a baseline (none injured brain) for a TBI study. We monitored it for 7 seven with no noticeable change then in 2022 it was growing. It was biopsies in July 2022 and identified as Oligodendroglioma Mutant type II. Because of the location involved the dominant hand and foot area we decided not to remove any move after the biopsy. Started 30 rounds of radiation in October 2022, and then six rounds of chemo starting right after Christmas. Follow up MRIs have shown shrinkage, but still currently there expect to see more shrinkage over the next year. Outside of finding the tumor by accident in 2015 and monitoring it for growth I had no other symptoms of having a tumor.

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@andlin

We found a brain tumor in 2015 when I volunteered to be a baseline (none injured brain) for a TBI study. We monitored it for 7 seven with no noticeable change then in 2022 it was growing. It was biopsies in July 2022 and identified as Oligodendroglioma Mutant type II. Because of the location involved the dominant hand and foot area we decided not to remove any move after the biopsy. Started 30 rounds of radiation in October 2022, and then six rounds of chemo starting right after Christmas. Follow up MRIs have shown shrinkage, but still currently there expect to see more shrinkage over the next year. Outside of finding the tumor by accident in 2015 and monitoring it for growth I had no other symptoms of having a tumor.

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My name is Dale A Dejnowski my MAYO connect name terridalecasino. I had a brain tumor when I was 11 years old. The Tumor type was a primary,pituitary, benign, astrocytoma, grade I in other words it was a slow growing tumor. According to the neurosurgeon, he told my mother it was about the size of a large size lemon. According to my nedical records [which I have from 1970] it was taken out in piecemeal.
However, I will say I did have symtoms that something was wrong? I just didn't know what? For about a year and half prior to my diagnoses I was experiencing severe headaches. having no idea something was growing inside my head? Especially at such a young age, age (11) years old. The only way we,[my mother, father, and I descovered it was when on the way to a newly built shopping mall I started to go into severe convultions in the car on the way there! After arriving at the E-Room and performing an ANGIOGRAM that's when they discovered this BIG O MASS in the right TEMPORAL, PERIETTAL, OCCIPITAL LOBES!. I also had a PNEUMOENCEPHALOGRAM, VENTRICULOGRAM AND A CRAINIOTOMY!
I truely feel it was because of my very young age (11) that I SURVIVED as well as I did? That and a whole lot of PRAYING. At age 65 now, I am doing so-so I still have TBI symptoms ie. lack of concentration,memory, and attentiveness. Which is why I study and research "NEUROPLASTICITY" MY DEFINITION "IS " THE BRAINS ABILITY TO ADAPT OR CHANGE IN RESPONCE TO WHAT I CALL E.E.I.T. [ENVIRONMENT, EXPERIENCE, INJURY, AND TRAUMA!
In closing all I have to say IS LIVE LIFE TO THE FULLEST YOU CAN AND DON'T BE AFRAID TO LIVE YOUR LIFE AS H.O.P.E. [HELPING: OTHER: PEOPLE: EVERYWHERE! GOD BLESS!!!!

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@terrydalecasino

My name is Dale A Dejnowski my MAYO connect name terridalecasino. I had a brain tumor when I was 11 years old. The Tumor type was a primary,pituitary, benign, astrocytoma, grade I in other words it was a slow growing tumor. According to the neurosurgeon, he told my mother it was about the size of a large size lemon. According to my nedical records [which I have from 1970] it was taken out in piecemeal.
However, I will say I did have symtoms that something was wrong? I just didn't know what? For about a year and half prior to my diagnoses I was experiencing severe headaches. having no idea something was growing inside my head? Especially at such a young age, age (11) years old. The only way we,[my mother, father, and I descovered it was when on the way to a newly built shopping mall I started to go into severe convultions in the car on the way there! After arriving at the E-Room and performing an ANGIOGRAM that's when they discovered this BIG O MASS in the right TEMPORAL, PERIETTAL, OCCIPITAL LOBES!. I also had a PNEUMOENCEPHALOGRAM, VENTRICULOGRAM AND A CRAINIOTOMY!
I truely feel it was because of my very young age (11) that I SURVIVED as well as I did? That and a whole lot of PRAYING. At age 65 now, I am doing so-so I still have TBI symptoms ie. lack of concentration,memory, and attentiveness. Which is why I study and research "NEUROPLASTICITY" MY DEFINITION "IS " THE BRAINS ABILITY TO ADAPT OR CHANGE IN RESPONCE TO WHAT I CALL E.E.I.T. [ENVIRONMENT, EXPERIENCE, INJURY, AND TRAUMA!
In closing all I have to say IS LIVE LIFE TO THE FULLEST YOU CAN AND DON'T BE AFRAID TO LIVE YOUR LIFE AS H.O.P.E. [HELPING: OTHER: PEOPLE: EVERYWHERE! GOD BLESS!!!!

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Thank You very much. I appreciate it.
I usually don't discuss or disclose this kind of information? However, if
others can benefit from my experience I feel better that their lives are
not as bad?
Many people are diagnosed later in life! I was only (11) years old. I
hardly understood what I was going through?
Why did GOD do this to me?
What I did learn, is that life is a GIFT! NOT TO BE USED OR ABUSED. AS SO
MANY PEOPLE DO.
I ALSO LEARNED TO LIVE LIFE THROUGH H-O-P-E, that is an acronym for
HELPING, OTHER, PEOPLE, EVERYWHERE!!!!!!!!!!! AND GOD DOES REWARD YOU 🙏😂
FOR IT!!!!!!
THANK YOU AGAIN.

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September 2021 I was diagnosed with oligodendroglioma stage 3. Had no symptoms other than monthly aphasia for about 5 minutes over the last year.

Had 6 weeks of radiation treatment and about 3 weeks of chemo. The chemo caused too many side effects so it was discontinued. Tumor could not be removed surgically due to its location but radiation killed off the glioma tendrils. What remains is the primary tumor in left temporal area, radiation reduced size by about 15%.

I am one year post treatment, the only symptoms are diminished short-term memory and it taking longer to understand and work with complex concepts/tasks.

And I wonder if there are any treatments available at Mayo that could reduce the tumor, halt it in its tracks, or anything that will then keep me healthy, feeling well, and living a long life.

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I was first diagnosed in 1996 at age 36 with a Choroid Plexus Papilloma which was described to me as the size of a "squished golf ball spread across 7 of the 12 cranial nerves". I had a craniotomy to remove the tumor and was told it was unlikely to regrow.
Fast forward to the present, and after 2 more craniotomies, Gamma Knife and lots of radiation, surgery to restore/improve facial nerve loss, and more radiation to deal with 5 new tumors; I am currently taking oral chemotherapy (Lomustine) to try to prevent growth and spread of new tumors found in my spine. The upside is I have lived a lot longer than anticipated, and I have a very happy life; I am now 62 years old.

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In late 2016 I had an MRI for an unrelated matter and it was discovered that I had a golfball-sized meningioma. In January of 2017 I had a craniotomy to remove the meningioma, which was graded as II (atypical). I had regular MRIs until August of 2022 when a recurrence was detected in the resection cavity. In December of 2022 I had Gamma Knife. In June of this year, my MRI showed around 25% shrinkage to the tumor, but it also showed another tumor growing in a different area of my brain (which had not been noticed in the August MRI and that had grown around 25% since then). I had another Gamma Knife procedure in early July to (hopefully) shrink the third tumor. All of these procedures were done at UCSF.

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I had double vision in 2018 and the ophthalmologist sent me to a neuro surgeon who found a meningioma. He did Gamma Ray surgery and I have to have an MRI of the brain every 2 years. So far so good.

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