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Long term anaplastic astrocytoma survivors
Any anaplastic astrocytoma survivors going on 30+ years post diagnosis? (Diagnosed in early 80s) How are you doing? What isssues are you dealing with? What are you watching out for?
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Running out of options
Hi. Where to begin? My long term boyfriend/ partner was diagnosed with primary CNS lymphoma of the brain 22 months ago. Very rare, awful disease. I have spent the last two years reading abstracts/ protocols/ searching the internet for all info concerning this cognitive robbing disease. He did the rituxin methotrexate…
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End Stage GBM Stage 4
My Mom is end stage GBM Stage 4 with severe cognitive impairment. Pastoral and hospice counseling offers no solace dealing with her impending death as she simply isn't rational enough to retain the information. I've been thinking of telling her that everything will be okay and she isn't dying but I'm fearful of doing so.…
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Resource - curethekids.org
Resource - curethekids.org - parent /sibling/patient resources, information, college scholarships, medical information, access to specialized childhood cancer social workers, and more for kids/teens/survivors of childhood brain tumors and their families.
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38 year Survivor
My daughter had a brain stem glioma at age 16 months and we were told she would die within 3 months. they did radiation and she started getting better! Her tumor melted away - a true miracle, we thought! Now at the age of 38 that same radiation is slowly taking her life. She has had 3 major "stroke-like" events and many…
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My mom has AA3 and a low Karnofksy performancescore
My mom was diagnosed with AA3 in February 2014 after a major seizure. It is likely that the tumor was around before that because in October 2013, she blacked out unexpectedly and hit her head, causing a hematoma. Three different neurosurgeons said she could not have surgery due to the tumor's location in her left basal…
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Long term effects of brain tumor
At 17 I was diagnosed with a germinoma brain tumor. I had radiation and chemotherapy. The tumor was erradicated with the treatment. The whole experience was life changing for my family and I. I was left with only two side effects of the cancer after treatment. I had double vision and my legs were very stiff when I walk. I…
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GBM Grade 4
My mother has GBM grade 4. She had surgery in March. Did radiation with temadar. Now doing higher doses of temadar 5 days on 3 weeks off. MY mother is 80 years old. At the end of February she was completely independent. Driving, doing volunteer work, cooking, going out with family and friends. Now she has lost all…
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GBM tumor size and location
I had two tumors 100% resected from my right temporal lobe. One was 1.5 cm and the other was 8 mm. The surgeon thought the procedure went very well and that she was able to get all of the tumors as well as some of the surrounding tissue that probably has dendritic activity. The oncologist said the tumors were very small. I…
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Anaplastic Oligodendroglioma Grade 3
My short version of my husband's fight My husband was DX July 2010, standard treatment. Had gamma knife in July 2013 for small area along with Temodar . Showed signs of progression while taking Temodar after 3 months so they put him on CCNU. After 6 months of CCNU that area cleared but another area appeared and the doctor…
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oligodendroglioma grade 2- how do you hold down a job with seizures.
Hello my name is Jeff and I have Oligodendroglioma grade 2 that i was diagnosed with in august 2011. I didn't have any symptoms at all before having a seizure at work. I was taken to the hospitol and they did a biopsy and that is how they found the type of cancer. I went back to work 2 weeks later. I had a bum foot after…