Ewing's sarcoma

Anne88 Member Posts: 1


I was curious if anyone is aware of the clinical trial for TK216 for Ewing's Sarcoma. If there is anyone who is involved or has any information. I have a stepson wwho has been battling for a year and half.I would appreciate any information.


  • “FEY”
    “FEY” Member Posts: 1
    edited October 2018 #2

    Hello Anne88, I deeply hope your stepson is doing well.  I was in the TK216 trial last May.  My path started with ES (PNET) in my left leg on sciatic nerve diagnosed May 2016.  4 rounds VDC-IE, surgery for radical excision, 11 more rounds until Feb 2017, right lung met found and removed April 2017 began Irinotecan and temozolomide, local lung recurrence and wedge resection Aug 2017, break in chemo for lung healing then another recurrence in right lung.  At that point I started TK216 at UCLA with Dr. Federman.  After 2nd round I had a problem with very high heart rate and extreme fatigue and chest pain (I am still able to pass physical fitness test for military for my baseline activity reference) for which I went to ER and admitted over night.  My tumor had grown large and pressed against heart and esophagus but they never identified what cause tachycardia, and the trial definitely did not work for me.  Radiation kicked those lung tumors, and I just had spine mets discovered, set up for radiation on those and looking for alternative options going forward.  I have been on Gemzar and taxotere since just before radiation in May.  Please let me know if you have questions and how your stepson is doing.  Best regards and fight on, Dan