Apr 12, 2014 - 1:12 am
My sister Annmarie was diagnosed with a Grade II oligodendroglioma in the temporal lobe encroaching on the brain stem in 2004. The surgeons were able to remove 30% of the tumor, however the remainder was inoperable. Her surgery was followed by months of radiation in an attempt to shrink the tumor. Although it did not shrink, the tumor also did not grow. This continued to be the case for 7 years, as the tumor was monitored with regular MRI's and no growth was detected. Between 2010 and 2011, Annmarie began to experience more frequent seizures of increasing intensity. Doctors changed her meds and blamed it on stress, but her symptoms continued to worsen. My mother and I decided it was time to seek another opinion. We found a talented team of doctors at New York Presbyterian. After several tests and new MRIs, it was discovered that her tumor had grown 50% larger. Surgery was a necessity.
In Sept 2012, Annmarie underwent another surgery in which most of the new growth was removed and the tumor was determined to still be Grade II oligodendroglioma. Approximately one year later her seizures began to increase in frequency once again. Her team at Presbyterian discovered 20% growth of the tumor. Her third brain surgery occurred January 2013 and she was diagnosed with a Grade II Astrocytoma. She was on temodar for a year after the last surgery, then this past February they found a new mass in the parietal lobe which is inoperable. She now has AA3. She tried a clinical trial of Everolimus and Sorafenib, but after only 5 days her symptoms of left sided weakness with numbness and tingling worsened. They started her on Avastin and BCNU last week.
I guess I'm reaching out for some positive news, suggestions, or any words or thoughts others going through this may have. her neuro-oncologist told us that without any treatment she could expect 6 months. Of course she is receiving treatment, but the idea of such a short amount of time left is impossible to even think about.