DSRCT Resources

Desmoplastic Small Round Cell Tumor (DSRCT)

If you know someone facing DSRCT, please utilize the resources below to find support, information, and contacts for treatment.

DSRCT Facebook Group

DSRCT Yahoo Group

At SarcomaHelp.org, The Faces of Sarcoma photo gallery shows many of the DSRCT patients we’ve come to know as friends in battle. They also have a detailed article about DSRCT.  Check it out HERE!

Cole has been treated by the following doctors, who are considered experts in their fields and have extensive experience treating DSRCT:

Cole’s primary oncologist is Dr. Pete Anderson. Dr Anderson treated pediatric solid tumors and sarcomas at MD Anderson in Houston for many years. In April 2015, Dr. Anderson began treating patients at the Cleveland Clinic in Cleveland, Ohio. Dr. Anderson is considered a leading expert on DSRCT and is a highly sought after pediatric sarcoma specialist. Dr. Anderson is able to consult and treat both pediatric and adult DSRCT patients. Dr Anderson continues to work closely with the team at MDA, and has personal relationships with some of the top oncologists, researchers, surgeons and radiation oncologists in the world. Dr. Anderson is also very experienced in consulting and collaborating with home oncology teams to make sure patient’s are able to do as much treatment as possible close to home. Dr. Anderson participated in a 2010 documentary called The Art of the Possible about 5 families facing childhood cancer.

Cole’s first surgery was at Memorial Sloan-Kettering Cancer Center in New York in 2007. The surgery was performed by Dr. Michael LaQuaglia who successfully removed 100% of the tumors in under 4 hours after my son had been declared inoperable by local doctors and St. Jude’s.

In 2011, after referral to MD Anderson by Dr. LaQuaglia, my son received HIPEC surgery by Dr. Andrea Hayes-Jordan. Dr. Hayes-Jordan has performed HIPEC on over 100 patients. Her team published an article about updated treatment outcomes in 2011. Dr. Hayes-Jordan is also featured in THIS article about her experience in treating DSRCT.

Cole received 9 infusions of his own modified T cells through a study at Baylor University with Texas Children’s Hospital in Houston. We traveled every 6 weeks from 3/2012 through 3/2013 for him to receive the cell infusions, and throughout he maintained stable disease with no side effects of the therapy. While promising, Cole has had no “measurable response” to the T cells but blood work shows they remained present in high numbers in his body long after infusion. Here’s a link to the study: http://clinicaltrials.gov/show/NCT00902044

We have had the pleasure of meeting the staff at the Christus Stehlin Foundation for Cancer Research. They even wrote about Cole! We are saddened to learn that the Stehlin Foundation and their important DSRCT work was closed in February 2014. The status of the large collection of DSRCT tumor and DSRCT tumors growing in mouse models is unknown. After 45 years of groundbreaking cancer research, the foundation was the only DSRCT specific lab research program in the country.

Awareness and Research Funding leads to increased survival rates. The Truth365.org is trying to spread awareness utilizing social media and produced a moving documentary on childhood cancer that was nominated for 3 Emmy’s. Watch and share it and help us save our children. Watch the Video Here!!! Cole is now part of the Truth365 campaign and hopes to bring attention to the need for funding and research for pediatric cancer.

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3 thoughts on “DSRCT Resources

  1. 12nightclub

    I am sadden to read about Cole. I read about him last year when I was doing research for my nephew. What a special, lovely young man. His strength will help future DSRCT patients.

    Reply

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