In the summer of 1994, I woke up in the middle of the night with burning pain in the medial left ankle. As the burning pain occurred more nights than not, I started to see doctor after doctor; other symptoms developed (pictures of mottleness, pictures of swollen foot). Over the course of many years, the burning pain was diagnosed as many things (planar fascitis, tarsal tunnel syndrome, RSD). I tried many things to stop the burning (orthotics, tarsal tunnel decompression surgery, RF nerve block, lots of different types of meds, biking). (Detailed description of foot pain) The burning pain continued until October 2001, when my calf muscle started to atrophy (pictures). With an EMG, the doctors were able to determine that very little tibial nerve signal was reaching the plantor flexor muscles. In February 2002, a mass was found behind my knee, at the base of my hamstrings (picture). I had an incisional biopsy on April 4, 2002 (details on biopsy surgery); the tumor is a Ewing's sarcoma/PNET (primitive neuroectodermal tumor). (Information about Ewing's sarcoma.)


In the beginning, my oncologist followed the COG (i.e., pediatric) protocol which involves chemotherapy, surgery, and radiation and takes 9-12 months. (Treatment details.) Preoperative chemotherapy began on April 22 after a few baseline tests; I finished after 4 cycles of chemo (12 weeks). My surgery to remove the tumor was on July 23 at MSK. I started my chemo up again on August 28, along with 31 radiation treatments. A chest CT scan on August 28 showed 5 micromets in the lungs; the rescan on October 2 showed 8. Between August and November, I had another 4 cycles of chemo (high-dose ifosfamide and high-dose ifosfamide and etoposide). The scan on December 18 showed an increase in number again, and the scan on January 20 showed an increase in size. Since the previous 3 types of chemo we have tried hadn't worked, I participated in an inhaled doxorubicin phase 1 study at MSK for 2 cycles beginning January 28. My repeat chest CT scan on March 10 showed additional growth (at least one of the growths is now called a "mass"), so we began a ET-743 + Doxil Phase 1 trial At Fox Chase on April 24; I received two cycles on trial. My June 2 CT scan showed disease progression again: lymph node involvement and more lung masses. I had two cycles of irinotecan and temozolomide (beginning June 9). Chest pressure and pain started in June. I received 2 weekly cycles of gemcitabine and docetaxel starting on August 1.


An emergency MRI showed up 3 brain mets on August 10 (I had symptoms for 3-4 weeks [confusion] with acute symptoms [vomiting, headaches] for a couple of days). I had a craniotomy on August 12 to remove to 2 brain mets.  I had a chest tube on August 14-22 to relieve some of the fluid in my left lung lining; it wasn't considered successful since the left lung did not reinflate after the tube was removed.  I had one cycle of topotecan and Cytoxan beginning August 25. I had 15 treatments of whole brain radiation, beginning on Sept 4, and ended on Sept 26.  I began lung radiation to my big lung mass Sept 16 (14 planned treatments) and ended Oct 3. 


Chest and brain scans were repeated on Oct 14.  It seems like both the brain and chest radiation treatments were successful since the brain mets have gotten smaller or decreased all of the way, and the large lung mass decreased a bit.  But, there are 3 tumors that have increased.  We used radiation on one of them (14 treatments of radiation to the upper left abdomen which began Nov 3 and ended Nov 21).  The two other tumors we would like to use as markers to see if chemo is working if we try chemo.   Scans were repeated on Dec 1 and the follow-up appointment will be Dec 4.  The news wasn't good.


A summary of my various chemos, radiations, and procedures is found here.



Copyright 2003 The Shriver Family: Last modified: 01/06/04.