Here is a message that was posted on the ACOR sarcoma group that I find very encouraging:
Hi Friends:I am delighted to inform you after 5+ years of struggle, Hema was declared
NED today from synovial sarcoma. People not familiar with her case - she
had parotid synovial sarcoma starting Thanksgiving 2005. Excision,
radiation therapy and MAID chemotherapy in 2006. In 2007, it had
metastatized to the lungs. Several tumors, large volumes. Then followed a
struggle of at least 4 resections of the tumors from the lungs over 2 years.
Several cycles of chemotherapy (high dose ifosfamide).
In 2008, after a resection, the tumors came back with a vengeance. At that
time, we had to make a call - go back to high dose ifos or something else.
At that time, we found NY-ESO-1 based immunotherapy from NIH in Bethesda,
MD. She qualified for the trial and was patient #2. She received 21 days
of this treatment in Feb 2009. Another 21 days in November 2009. No new
cancer was found until September 2010. There were 4-6 residual tumors that
were in steady state or shrunk. But around September 2010, those tumors
showed some growth. At that time, the doctors could have gone for one more
shot of treatment - but since there was no new cancer, they decided to
remove the tumors that were there.
Our key worry was that there are publications that point to surgery as a
promoter of metastasis. And that concerned us. But after some spirited
debates with the doctors there (brilliant guys), they convinced us that
surgery was the route. September and October were months of surgery - two
surgeries on two sides - all tumors were resected.
Today was here 3 months scan and they did declare her NED.
Best wishes to all,
Atul