Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Following May 5th, 2008 surgery to resect as much of her large metastatic spinal muscle tumor as possible without risking paralysis or necessitating instrumentation and spinal fusion, on June 8th Brittany began a meticulously planned six week regimen of intensive maximum dose 50 gray photon radiation to her spinal area to try to destroy the remaining portion of unresectable tumor. However, after three weeks of the radiation treatment it had to be immediately discontinued following an MRI to determine the cause of Brittany's increasing severe spinal area pain and right arm numbness. The MRI showed that not only had the radiation been unsuccessful in shrinking or killing the tumor, the tumor had rapidly progressed and spread up and down along the spinal canal, pushing on the spinal cord and threatening spinal cord compression and ultimate paralysis. This is further evidence of the radiation resistant nature of this insidious disease. It almost seems like the radiation actually caused the tumor to progress more rapidly. We discussed the possibility of stronger proton or neutron radiation with the radiologist, but were told that these two treatment modalities would be too dangerous due to the close proximity of Brittany's tumor to the spinal cord and the risk of paralysis from radiation damage to the spinal cord. Also, Cyberknife radiosurgery was ruled out as a treatment option due to the more focussed nature of Cyberknife to treat individual tumors, rather than the lengthy expanse of Brittany's tumor which extended up and down the spinal canal from C3 to T7. On August 7th Brittany underwent an emergency second spinal surgery to remove the tumor, and we are currently exploring Clinical Trials for a systemic treatment that will hopefully be able to kill any remaining tumor cells and prevent further disease progression. Heartbreakingly, it appears that radiation is not a viable option for treating this tumor.