Join DTRF, local runners and our amazing patient community for our 5th Annual Running for Answers 5K Run/ Walk and Kids' Fun Run! This will be a banner year for us, and we look forward to celebrating our journeys and successes with you this year! 

 

Our Patient Meeting will take place on Saturday, September 27 and RFA will take place on Sunday, September 28, in Philadelphia.

 

 

Stay tuned for more details and follow us for updates!

 

                                                              

  

This is a pilot study examining the role of sirolimus in the treatment of children and young adults with desmoid tumor that is deemed likely to recur following resection.  Sirolimus directly targets and inhibits a pathway that may be critical for the development and growth of desmoid tumor. Sirolimus is attractive as a potential drug for desmoid tumor because it is well-tolerated in children and young adults and it can be given orally. Sirolimus acts by blocking a growth promoting pathway called the mTOR pathway.

 

This study has four main goals.  The first goal is to determine if the mTOR pathway can be blocked by taking sirolimus before surgery.  The second goal is to assess whether sirolimus improves pain symptoms that can be caused by desmoid tumor.  The third goal is to determine whether giving sirolimus before surgery decreases the risk of the tumor regrowing.  The fourth goal is to see how well the body tolerates sirolimus when it is given before surgery.

 

Eligible patients would be given sirolimus by mouth.  After 28 days of taking sirolimus, the patient would then have surgery to remove the desmoid tumor. Special tests will be performed on the desmoid tumor tissue following surgery. To assess whether the sirolimus has any effect on pain, patients will be asked to rate their pain once a week while taking the drug.  Imaging will be performed during the study to monitor for tumor response and after surgery to monitor for signs of tumor regrowth.

 

More information here.

                           

 

Feel free to visit the DTRF website to access published research on desmoid tumors. We update this portion of our site regularly- thank you Phil and Jill Grand!  Visit the page here.

 

Within the next month, we will be unveiling a filter function, allowing you to search individual words in these published papers.  

 

"Be our Guest!" Click here to buy your tickets online!

 

   

     

 

More information on the trial here.           

 

This email is intended solely to provide general information for your reference only.  Any information contained herein is not intended as medical advice for any individual problem, or as a diagnosis, treatment plan, or recommendation for a particular course of action, and should not be used as a substitute for professional medical advice and services. Please do not delay in obtaining professional medical advice regarding your individual circumstances.