I was dx last week with stage 4 synovial sarcoma. It has gone to my lungs. I do not know if it is anywhere else. I think they think it is in the lymph, too. They said it is systemic. They have not made any further mention of more testing or surgery at this time. My next step per the appointment is beginning Votrient orally 4 x per day for a month with weekly bloodwork and a continuation of one more month if all goes well with toleration, etc. Then they will look at cts again. They will assess for shrinkage. I looked the med up on the FDA gov website. It said that the drug was approved for patients who have advanced disease AND who have been on other chemo which I have not. Also, it seemed from the studies that halted progression was achieved for a short period of time, but it does not mention tumor shrinkage in the exerpt. I would love to get my hands on the actual study. Also, what has been your experience with Votrient, if any? I welcome your input so much as an aid to learn all that I can and make my own informed decisions about my own body. It means so much to share with you here. Thank you for any replies and prayers! Debbie.
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