I have been battling SS for 21 years now. I've had 7 lung surgeries and a partial lumbectomy was done on my left lung. I have pretty much been on every chemo regimen for SS during this period and have had multiple radiation therapies throughout my body bc surgery is no longer an option for me. I'm currently taking Vortient (Pazopanib at 600mg.) which had to be reduced from the max of 800mg and have been taking this since Aug. 2012. It seems to be working for the moment bc in Nov. I experienced some shrinkage to one of my tumors. Side effects will vary depending on the individual, but I experience low WBC's, chronic fatigue, loss of appetite and taste, and high blood pressure. My hair has turned white all over my body and my pigmentation has lightened a lot and I'm noticing a little toxicity in my finger nails and toe nails bc they are turning dark. For the most part, it's pretty easy bc it just taking pills, but it's potency is pretty significant.
I have to share that the most successful regimen I have ever been on was the Trabectedin drug (Yondelis Trial). I was in this trial for 5 years (64 rounds) before it stopped working on one of my tumors. It was a 24-hour infusion every twenty-one days. During this period I had a varied reponse (shrinkage, calcification, and stability). Four days after treament, I was really good and felt like l had some normalcy bc I was bascially doing everything that I wanted without limitations.
Today, I focus on eating healthy to help counteract the side effects and staying positive and not giving in. Keep fighting! God bless you and your son!