My daughter has just started a trial on MORAB-004 (TEM-1). She had her first dose last Wednesday and did not receive any side effects during the delivery of the treatment. We will not know if it is working for another four weeks. Has anyone else been on this treatment? Can you please share with me any information on this trial? Any successes? Thank you.
Did they check if her primary tumor was expressing endosialin? Apparently endosialin is the target for this drug. A few years ago, a study showed 8 out of 10 synovial sarcoma specimens were positive for endosialin:
http://clincancerres.aacrjournals.org/content/14/22/7223.long
I am wondering though is they check individual patient's tumor as part of the trial...
Hi Elodie - testing of the tumor was not part of the inclusion criteria. We did ask to have it tested to help with our decision on which trial to put our daughter on but the doctor specified that the testing would not be the deciding factor and they may not be able to do the testing at the hospital. We are praying she has the presence of this endosialin in all areas. We will keep you posted on the outcome of her scans in three more weeks. Thank you for your feedback.
what I understand that chemotherapy side effects will start the next day or after. keep a phone number of the hospital, and call them before you bring her to ER. Some side effect like nausea, vomiting, ...etc are normal.
God with you and her...
We had scans yesterday and this study was not a success for us. One of the tumors in her lungs decreased but others increased. We are going off this study and starting Pazopanib tomorrow. Anyone have any good results with Pazopanib? Any other treatments to keep lung nodules stable or shrink them? Still awaiting feedback from Foundation Medicine.
Thanks Trish for the update. Pazopanib is also called votrient and a bunch of people here have tried it or are still taking it. It seems to work for some but not so much for others. You can do a search in the past discussions. I do hope it works for your daughter. Good luck!
Thank you, will do. Hope all is well with you.
Elodie Espesset said:
Thanks Trish for the update. Pazopanib is also called votrient and a bunch of people here have tried it or are still taking it. It seems to work for some but not so much for others. You can do a search in the past discussions. I do hope it works for your daughter. Good luck!
Pazopanib (Trade name Votrient) worked for Jaclyn. Except for one huge tumor in her lung the Oncologist said was just to big for Votrient to do anything with. We wished that it had been FDA approved and Jaclyn could have started it earlier. Never know until you try. I pray that it works for your daughter.
Trish said:
We had scans yesterday and this study was not a success for us. One of the tumors in her lungs decreased but others increased. We are going off this study and starting Pazopanib tomorrow. Anyone have any good results with Pazopanib? Any other treatments to keep lung nodules stable or shrink them? Still awaiting feedback from Foundation Medicine.
Hi Lynda - thank you. We continue to pray this will keep things at bay but continue to research for other alternatives. All the best.
Lynda said:
Pazopanib (Trade name Votrient) worked for Jaclyn. Except for one huge tumor in her lung the Oncologist said was just to big for Votrient to do anything with. We wished that it had been FDA approved and Jaclyn could have started it earlier. Never know until you try. I pray that it works for your daughter.
Trish said:We had scans yesterday and this study was not a success for us. One of the tumors in her lungs decreased but others increased. We are going off this study and starting Pazopanib tomorrow. Anyone have any good results with Pazopanib? Any other treatments to keep lung nodules stable or shrink them? Still awaiting feedback from Foundation Medicine.
Katie has been on Pazopanib now for about 3 weeks. For the last week or so she has been pain free so we are hoping this a sign that the drug is working. We will be scanning after 2 months of being on the drug. Has anyone been on this drug for a long time? would love to hear some long term success with this drug....thank you
Thanks for the update Trish. You may want to ask your question about pazopanib (votrient) in the following discussion:
http://forum.synovialsarcomasurvivors.org/forum/topics/votrient-1
Anybody who posted in the discussion would receive your question and some of the participants are probably still taking votrient...
You can also start a new discussion about votrient and share it with all members.