Meningeal Sarcome

rcook Member Posts: 2
My 17 year old son was was diagnosed Oct 2011 with meningeal sarcoma. I was told it was very rare. I'm looking for someone that has been successful with treating it. My son had the tumor removed from his left frontal lobe 10/2011. In Jan 2012 when he was starting proton beam therapy MRI showed it back in the same spot. He had 2nd surgery to remove. Started Proton and half through it came back. Doctor did not stop treatment and at the end the tumor did not show on MRI that was March 2012. June 2012 we had MRI and was told it was clear , however, that was not true. There was a small spot and Sept 2012 he had a headache that would not go away. MRI showed the biggest tumor yet in the very same location. He had his 3rd brain surgery. 9/28/2012 he started chemo. Doctor said he would not remove it again unless we considered removing part of the "good" brain. Need to talk to someone tha has expaerience with this type of cancer PLEASE!