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Ewings Sarcoma

Kendradaniel
Posts: 3
Joined: Jun 2014

My brother is 22 years old diagosed in December with metastasis Ewings Sarcoma in his right pelvis (bone and soft tissue) and bilateral lungs.  He has completed 6 rounds of VIDE and 1 round of VIA.  After completing the VIDE in April his scans showed he had two remaining tumors in his lungs.  They decided to remove his lower right lobe which contained the tumors at the end of May.  Today he had a PET scan and MRI before he continued on with the 7 cycles VIA.  We were shocked to find out that 4 nodules have reappeared in his left lung and the brightness in his pelvis has increased from a 4 to a 6.  His doctor informed us that she may not be able to 'cure' him.  Can you please let me know of any clinical trials or possible opitions?!?!?  We are willing to travel anywhere.  Thanks in advance for all of you help.

soul-mate's picture
soul-mate
Posts: 82
Joined: Feb 2014

Sorry to hear about your brother and wish him the best ahead. My only input here is to check Kevin Sharp story with Ewing's, as he wrote a book about his treatments and all the stuggles and success with ewings. This may lead you to some of his careproviders and trials. Good Luck.

SOUL-Mate

mrspjd
Posts: 694
Joined: Apr 2010

Dear Kendra,

Sorry to read of your brother's Ewing Sarcoma dx. I highly recommend getting in touch with Stuart Siegel, MD at Childrens Hospital Los Angeles:
http://www.chla.org/site/apps/kb/cs/contactdisplay.asp?c=ipINKTOAJsG&b=3832751&sid=6oIHLQMqGcLNJ0PuHkF&r=1
 
Dr Siegel treated my friends son who was dx'd with Ewings Sarcoma 17 yrs ago. Her son, now 32 yrs old, is alive today because of Dr Siegel. 
 
Your brother is fortunate to have you as his advocate. Best of luck to you both.
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