Ewing's Sarcoma/PNET (Soft Tissue/Retroperitoneal Cavity)

Hello all,

I've mainly been a lurker of the forum since my Fiance' Jenn was diagnosed back in October 2009 with Ewing's Sarcoma/PNET. A little background on what has happen over the course of the last year and a half......

Jenn was given a very poor chance of survival from her initial oncologist as well as surgeon back in 2009, yet today she is alive and still fighting this ugly disease like a warrior. She was told that chemotherapy was the only treatment option for her since tumor which at it's largest point was (22X17.5X14cm) and that surgery was out of the question as was radiation therapy. Well, the chemotherapy was brutal but after only seven rounds of P6 Protocol her tumor had shrunk from the above mentioned size down to 4X2X3cm overall in size. That unto itself is a miracle! Her last chemo treatment was April of 2010. Jump ahead to May 28, 2010, Jenn's new surgeon was able to debulk the remaining tumor great than 80+%, however there was a margin that was "Unresectable" according to the surgeon. Jump forward to September 2010, Jenn started a 32 day treatment of radiation therapy which was tough but by all means was a whole lot easier then the chemotherapy. Jenn has had a complication with a DVT in her right leg as well as her kidneys however since the tumor was so large at one point that it caused Hydronephrosis of her right kidney so stents were placed back in November 2009 as well. The DVT seemed to resolve over time and with the use of Lovenox shots. As of this moment, Jenn has bi-lateral nephrostomy drain tubes since the stents that they've placed seem to irritate her ureters, bladder and kidneys. Her Creatinine levels have pretty much leveled out to their "New" normal which is around 3.1ish. The plan is for the tubes to come out once her stents "Stabilize" enough to allow for removal of the tubes. Her blood counts also continue to slowly go through "Peaks & Valleys". Her platelets rise and fall from the 50,000's to 85,000's ish. Her hemoglobin can jump from 13 down to the low 7's depending upon her activity level. This obviously makes her a tired camper most of the time.

The problem that Jenn faces now is that as of last Friday (02/18/2011) her most recent PET Scan showed that the tumor, while smaller was still present after all of the radiation. Because of the nature of where this tumor resides, it is incredibly difficult trying to find a surgeon whom is a) confident enough and b) willing to undertake this difficult of a surgery on Jenn. The plus side of this is that the cancer HAS NOT metastisized anywhere else within her body! So now it's a matter of finding a specialist surgeon who'd be willing to undertake the removal of the remaining tumor which unfortunately is on and around her inferior vena cava, abdominal aorta and a small portion of her small bowel. We're waiting to hear back from her oncologist whom will be presenting her case to the tumor board this coming Tuesday (March 1, 2011). After that, hopefully a treatment plan and surgeon will be found for her. If the Kaiser team fails to find any sources within their realm I myself will be pushing them to refer her to either "City Of Hope", Cancer Treatment Center Of America or Stanford for further treatment and removal. The way we view it is, after talking to a friend whom is a vascular surgeon, removing and rebuilding an abdominal aorta and inferior vena cava CAN be done but he would need to discuss the removing the portion of small bowel that might be most problematic per se.

If ANY of you have any suggestions, they would be greatly appreciated. We live in the Northern California Valley area. Please keep Jenn in your prayers and thoughts. Thank you!