I was originally diagnosed with synovial sarcoma between ribs 9 & 10 in May '05. I had a chest resection followed by Doxirubicin and Ifosomide. My CT scan in Feb '09 showed one abd. node had grown and a new left lung node (3mm). May's CT showed 4 nodes in right lung, 2 in left lung, abd node had grown again, and a new inferior renal vein mass. All were under 2 cm. Two of the right lung nodes have eaten away 1/3 to 1/2 of my rib 9 away...I had radiation in July for bone pain (which is much better now). I have a CT scan coming up next week to see how much they've all grown. Chemo is pending.
What I'm struggling with is the decision of treatment. I could do Ifosomide again, but at a higher dose. There is a new drug Yondelis, but it seems it would be used infeffinitely until the drug stopped working (until the masses start growing again). They have had a patient on it for 42 rounds (you wear a pack for 24 hours and get disconnected the next day...come back in 3 wks if your blood count is good and do it again...CT scan after every 2nd round). That's over 2 years!! Just not sure if I can psyche (sp?) myself up for that amount of time....and also the whole PIC line thing....not sure. The side effects are supposed to be not as severe as other chemo. Just doesn't seem like much of a life to me.
Has anyone been on Yondelis? know of anyone on Yondelis? are there any other options? How about the PIC line...I'd like to hear your experience with it.