My son is not NY-ESO-1 positive, and he had a tumor bleed on Votrient. If nothing helps him, he has now been given less than 6 months. He is 18-years-old and has a metastatic tumor in his pleural lining. The first time he fought SS he had a localized tumor on his back, had a whoops surgery by a general surgeon who thought it was a lipoma, and then did AIM, radiation, and a resection. Now, his pleural tumor is inoperable and is just in a very bad spot. I’m desperate for something to help him. He is testing his tumor for MAGE, but he is trying this immunotherapy trial now (durvalumab & tremelimumab). My question is: Is there anyone here who has done this trial and had it help to shrink or stabilize their disease?
Hello Chrissy, Any response for your son? hope it is working. Keep us posted! I also have SS stage 4 at pleura. thanks much!
They ended up saying that the pleural tumor was not measurable for this particular trial because they couldn’t tell what was tumor and what was fluid. He had 4 biomarkers for the Actolog IMA101 trial, but he was too advanced to pass the pulmonary functioning test. His tumors grew really fast and had taken over his left lung by the time he finished screening for Actolog. Sadly, my son passed 9/23/17. I’m so sorry I don’t have better news to share. Have you screened for the MD Anderson NY-ESO-1 trial? Actolog is another option… but screening has to happen fast, and follow sarcoma specialist recommendations while you wait.
Thank you Chrissy for your reply. I am so sorry to hear about your son. Indeed it is really a fast growing desease .
Unfortunatly, i cant have the IMA101 trial or other CAR-T because I am not HLA+.
That gives me very few chances to get into some of the new trials.
I don’t know how to screen for NY-ESO-1 too. I’d like to have a full screening like foundationOne, but don’t know how to do it. I am in italy and oncologists are not very supportive here. They just use chemo (on votrient right now), and that’s it.