Yondelis - no longer an option

Killian had several scans today which confirmed what looked to be tumor progression in his left jaw and ear. Very, very small spots on his lungs look to be no larger and no additional nodes (neck) were infected. This means that Yondelis is not working for him. The first question asked of him was if he wanted to talk about other treatment options. He said, “as opposed to what?” Dr. Fox said, “well, you could live your life without hospitals, drugs, medicals trips and just see what happens.” Killian was adamant that he wanted to try another drug trial. He is concerned that it not be completely all-consuming/devastating to his life at present, which leaves out some options. However, there are no confirmed treatments for Synovial Sarcoma – no if-you-go-through-this-hell-you-have-a-good-change-of-making-it treatments. So, at present we are looking for balance.

The doctors at NY Presbyterian Morgan Stanley Hospital and at NIH are working together. Each has enrolled him in trials – just so that the spaces are saved. I will be researching options tonight, and anticipate Dr. Fox here at NIH and Dr. Granowetter in NYC to have some answers tomorrow to questions I’ve already posed. I think Killian will decide on an option tomorrow, providing he has the information I believe he needs to consider all pros and cons. Phil and I will talk late tonight to feel each other’s opinions out.

At NIH, he will do some tests tomorrow to confirm his eligibility for a trial of a drug called Cediranib. He could possibly start on this as soon as Monday. It is taken orally and will require monthly trips to NIH. I sense that when you have a continuum at NIH, alacrity of moving from trial to trial is better. I’ll feel Dr. Fox out about this more tomorrow. Here is a link to abstract on Cediranib trial:
http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=486817&version=HealthProfessional&protocolsearchid=5108956
In NYC, Linda Granowetter may use the same eligibility tests for VEGF – trap. He could possibly start on this as soon as Monday as well. It is delivered through his port every three weeks at a hospital closer to home that feels more like home. Here is the link to VEGF – trap:
http://www.pnas.org/content/99/17/11393
Dr. Fox mentioned a Phase II trial of the anti IGF-1 receptor R1507. This at least mentions use for Synovial Cell Sarcoma and has fewer side effects (I believe). It would require weekly infusions through his port, but I’m unsure as to whether he would have to enroll at NIH or could Granowetter enroll him in NYC. Need to know more about this and anticipate information from Dr. Fox tomorrow. Here is a link to the abstract on that trial:
http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=588162&version=HealthProfessional&protocolsearchid=5102663
There has been a lot of talk about Irinotecan on the Sarcoma Alliance Discussion Board. There appears to be a trial open, but neither Dr. Fox nor Granowetter have mentioned it. I will pursue more information tomorrow. Here is a link to that abstract:
http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=563758&version=HealthProfessional&protocolsearchid=5108956

Finally, I’ve heard some information about other drugs and about folks do genetic assays before trying drugs to see if there’s any point. Phil and I have lots of reading to do and will ACTIVELY post here what we find.

There’s always hope – we all feel this strongly. Feel free to post to this blog and we'll get back to as soon as we can.