Sep 30, 2012 - 10:43 pm
I'm looking for someone that has been diagnosed with Meningeal sarcome or someone that has experience with it. My son was diagnosed 10/2011. He had tumor removed then; two short months later it came back; another surgery (left frontal lobe) reoccurred in the exact same place, started proton beam radiation in Jan 2012, three weeks into treatment it came back, did not remove that time just kept going with treatment, end of radiation it was gone that was March 2012. June had MRI was told it was clear but it had a small spot and two weeks ago, back in ER with another tumor the largest of all, in same place. He had his 3 brain surgery to remove and has now started chemo this past Friday. He has had a number of MRI's, Pet scan, and CT scan with no other cancer. Doctor say this is very rare adn even more aggressive. Please let me know if you have any information that could help my son!