Latest messages for CancerCompass discussion http://www.cancercompass.com/message-board/message/all,10065,0.htm Sun, 22 Nov 2009 00:00:00 GMT Sun, 22 Nov 2009 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Thanks for finding the link :) Beebes Fri, 09 Mar 2007 00:00:00 GMT "Rexin-G(TM), The World's First Tumor-Targeted Gene Therapy Vector, Stymies Metastatic Cancer" http://www.medicalnewstoday.com/medicalnews.php?newsid=56021 Wunderchu Wed, 07 Mar 2007 00:00:00 GMT One thing I forgot, there was a study done on people who recieved treatment for pancreatic cancer. Those that did the best were those who had constant monitoring of their disease and who switched from one therapy to another as soon as the first one failed. Our oncologist back home always suggested that 3-4 months go by between catscans. We quickly realized that they needed to happen every 6 weeks or so, so that we could change therapies when one got around the cancer. That is very important!I am praying for your miracle.Jessie Beebes Sat, 03 Mar 2007 00:00:00 GMT My Mom had the exact same symptoms and was diagnosed October of 2005 with adenocarcinoma of the pancreas and metastisis to the liver. I am also 34 years old. I know how you feel. I wish that I could say things had gone well. She passed away on October 23, 2006 at the age of 57.I can feel your pain because I have lived it. I hope beyond all else that your Mom does not have this devastating disease. I spent a year researching every single option there was. The learning curve for this disease is extreme. You feel like you have so many decisions and so much that you need to research and yet you have no time. I think there are some things that I learned which may be helpful.The first thing is to find a doctor who is willing to work with you. Our first experience with a doctor after my Mom was diagnosed was very negative. He told my Mom that she should go home and die peacefully. They gave my Mom 6 months. She lived almost a year. During that time she saw 2 daughters get married, one graduate from high school, and three grandchildren come into the world. She moved my sister into her dorm for her freshman year at college 1 month before she passed away. Time is precious - even when your time is short. She fought every minute. I know that she desperatley didn't want to leave, but she was there for some extremely important events. I do not think she would have been if she had taken the advice of her first doctor. The second thing is to go to a comprehensive care hospital. By this I mean a large cancer center. They have better access to new therapies and off label treatments (for example - using a chemo that is not specifically listed for pancreatic cancer use). We found that our local oncologist was very willing to work with oncologists from other hospitals. My mom lived in a rather small town. Don't be afraid to ask questions and to ask if your local oncologist can cooperate with a doctor from another hospital. Don't be afraid to petition your insurance to pay for therapies not specifically made for pancreatic cancer.Put together a notebook that lists all treatments. Ask for any reports and keep them with you when you go see other specialists.Try to keep your Mom eating! My mother got so many books on diets to cure cancer from well meaning friends. The only problem is that pancreatic cancer throws your metabolism into hyperdrive. I answered another post about a Dr. Bruckner below this post. He is a very good doctor who we saw at the end of my mother's treatment. I hope you will read that post as well. He said that fast food or whatever sounded good was the best thing for pancreatic cancer patients because they basically need high carb and high fat. Most pancreatic cancer patients starve to death because they stop eating. I didn't think that would happen to my Mom. She was 181lbs when she started and joked with the doctors who told her to keep her weight on. She said "You mean I don't even get to be thin." Eight months into her illness she was down to 131 which she maintained until the month before she passed. The day she passed she weighed about 85lbs. You should look into Pro-sure which is made specifically for cancer patients. It is only available on line through the folks who make Ensure. Dr. Bruckner also advised my Mom take Tagamet to help with eating, and it did help a bit. The one thing that I am sad we did not do was get on a drug called Rexin-G. My mother tried all sorts of chemo. She did Avastin, Gemzar, Xeloda, Oxaliplatin, Lecouverin, Irinotecan. They were successful to a point, but the cancer always mangaged to get around whatever chemo they threw at it. Rexin-G is gene therapy. It is made by Epeius Biotechnologies and is in a clinical trial at the Mayo Clinic in Rochester MN under a Dr. Galanis. They have some really exciting trial info from Japan and the Philippines. What I liked about this drug was that it has very few or even no side effects and it attacks the more aggressive cancers the best. I spoke with several people who have actually taken the drug and who have seen results from it. I also spoke many times with one of it's creators, Dr Gordon. She explained that the goal was not necessarily to cure cancer but to manage it indefinately - much as they do with the AIDS cocktail. So you might have cancer your whole life, but it would never get to the point where it could take over. I learned about the drug in May of 2006 but we didn't decide to do it until August of 2006 and my mother got too sick too fast. I wish that we had tried to get to the Mayo back in May but it was all so scary to think about leaving home. It might be something for you to look into at the beginning of your journey.  I hope I am writing this for nothing. I hope you never need to use this information. But if you do it is so important not to give up hope. There was one clinical trial that stood between people dying of AIDS and people living with it. You never know what is around the corner. You never know how your Mom will respond, and miracles do happen. Jessie - please let me know if I can be of any further help to you  Beebes Sat, 03 Mar 2007 00:00:00 GMT