Hi. Have you checked out any clinical trials? My husband also had Sarcoma that started in his leg and spread to his lungs and brain. He passed away on January 1st, but he had over 13 mets to his brain. There was a trial in Bethesda, MD for a drug called Nelfinavir, which is currently used to treat Aids. It is being done by the National Cancer Institute and they pay a lot of the expenses, including travel.
I spoke to the Dr. running it and he thought that it would break the blood brain barrier and that sarcoma was one of the cancers that they were hopeful about. Unfortunately it was too late for my husband; he was being treated for his symptoms with decadron (a steroid) and which he needed to keep the swelling down, and Nelfinavir could not be taken with steroids.
Also, was there ever any mention of CyberKnife surgery or Whole Brain Radiation?
Good luck.
Brenda
On 11/27/2007 Elanor wrote:
My husband of only a year was recently diagnosed with a rare brain tumor after surving in Afghanistan for 11 months. He has been undergoing chemo treatment and has had 3 operations. The tumor is already growing back after a month. The doctors have told us to make him comfortable and hospice will be making the pain go away. My husband is with it, he is not stuck in a bed unable to speak, he still functions! He has a sarcoma brain tumor. Does anyone have any ideas?