CancerCompass message board discussion started by Urachualknower on 6/13/2006 http://www.cancercompass.com/message-board/message/all,5641,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hey Everyone You may be seeing my messages out there as responses to some of your entries. I just found this site and wished that I could have had all your input 4 years ago when my sister my diagnosed with urachal adenocarcinoma. Her story is a good one so I want to tell it. Upon her diagnosis four years ago, I could find nothing optimistic out there. Well, what I learned is that this is not a death sentance. She is still here (YEAH) having survived 2 surgeries, one chemo regime (5FUL, irinotecan, and avastin), alot of laughs, alittle sickness, 2 weddings, MBA graduation, babysitting gigs for my 2 kids (6 and 4 years old), decorating a new shore house, painting furniture and generally adding to the life of our family in countless ways. How did she get here...well 1st -- a great surgeon (Dr. Carl Olosson from Columbia Presbyterian in NYC-- inventor of the bladder patch and worth a trip to see him if your area dr. thinks you have this), 2nd a great and well known oncologist -- Dr. Dan Petrylak in the same hospital and 3rd -- a great attitude that she will do whatever necessary to beat this. Right now, she is battling her 3rd re-occurence. This time, she has a 2.5 cm cancerous node in her retropertineal cavity (not a place causing her any problems or discomfort). SHe is starting a new trial drug (Not chemo but the new grouping of cancer drugs called anti-angiogensis). This is the next new break thru in cancer treatments and has little side effects. The trial begins on 6/21/06 at Columbia (and proabably other sites). It is a phase 1 trial but would be open to urachal patients (solid mass tumors). I ENCOURAGE ALL patients to have their doctors touch base with Dr. P -- he is our genius and my sister (and her great quality of life for the last 4 years) is a testament to that. PLEASE make sure your doctor or you touch base with him for his input. My sister was in his office today and he was very interested in knowing that there were so many of you out there. Just remember, rare is not a death sentence only a question mark. 4 years ago, they told my sister to go home after surgery since there was nothing available for her. 2 years after that, and another occurence, there was a protcol for her to try. Now, 2 years later, it has returned in a place that cannot be surgerically removed but hence, there are at least 3 more things to do as follows (not in this order just something to discuss with your doctor): 5FUL/irinotecan/avastin the platinum based drugs (gemzar, cisplatin) altimia with radiation (lungs) m-torr inhibtor drug trials anti-angiogensis drugs taxatere a new kidney drug that is given orally There is hope....I feel it everyday, I hope you or your loved one does also. Share Jane's story of success --she is living life. It is the real story. Feel free to use my name and hers in any conversation with Dr. P Melissa (and her survivor sister Jane) Urachualknower Tue, 13 Jun 2006 00:00:00 GMT