CancerCompass message board discussion started by Prettybird on 8/30/2006 http://www.cancercompass.com/message-board/message/all,6674,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband was diagnosed in 12/o5 with this horrible disease..He had lung cancer in 1994 and was cured. now this shows up..they said there was some portal vein invasion, but no lymph node invasion..it is in the head of the pancreas..he has had gemzar with no luck...then zeloda and avastin 2 rounds...has been on nothing for about 3 weeks..have found a clinical trial at mayo that looks promising and it looks like he meets the criteria..will check with his oncologist today.. we are not ready for hospice just yet..have to try everything available first...Does anyone have any experience with the mayo clinic in minnesota...couldn't get into trial here, because they couldn't get the cancer sample they needed..it had to be clean of any tissue, cancer cells only...they did two biopsies, still couldn't get pure sample..he has copd and diabetes, so he couldn't get the whipple surgery... been married 26 years..this is the hardest thing we have ever been through..why aren't there more options available??? Prettybird Wed, 30 Aug 2006 00:00:00 GMT This is a fast acting silent agressive disease. You said that you couldn't get help here, where is that? Sloan Kettering, Johns Hopkins, University of Chicago, MD Anderson, Mayo are all top knotch programs. I'm sure that there are more. I've got stage 4 and I'm at Universtiy of Chicago. Don't take NO for an answer push hard and fight. It is worth every minute of the battle. Dr Hedy Kindler U of C 773 702-4400 is working with three or four other regional hospitals that offering the same clinical trial as I am on. Call them and maybe tthey can direct you to a more local hospital with same attack plan. God Bless You, your husband and good luck in your battle. Dave B. Dave b Thu, 31 Aug 2006 00:00:00 GMT Sorry to hear about your husband PrettyBird. It is not a easy road. I do know exactly what you are going through. Yes, I have been through it with my husband. We were married 28 years and 4 months. Yes, he passed away in hospice Dec. 17th, 2003. Only 4 months and 5 days after his diagnosis of stage 4 pancreatic cancer. The duct to his liver never fully blocked, so he did not get jaundice. He had it all in the tail and all the body and the first part of the head of the pancreas. It was not operable because it was wrapped around the messenteric artery and the splenic and another artery I cannot remember right now. It was around all the nerves and veins and vessels. It pressed against the duodenum and he had to have a gastric/jejunum tube and it was very painful. He had a pain block done in 4 places in his back. It lasted maybe a month, if that. He was in so much pain. It was awful to see him go through so much. He was in pain for a long time before he started to lose weight and two doctors told him he was fine and he needed to go to mental health. I even started to think he was over reacting. When he started to lose weight I felt so guilty. Then the doctors believed him and did further tests. It was too late by then. Why they don't just do a cancer blood test first of all is beyond me. They say it is too expensive and insurance companies won't pay for it unless you have been diagnosed already with cancer. So sad the way their protocol works. A fistula formed from his bowls to his stomach and he became septic. That is what really took him. There was nothing more they could do they said. He was forced to go to Hospice. They kept him on morphine and each day he needed more and more. Ativan made him hallucinate. He was a big strong guy and he became so thin and frail. They said he would pass within a day or two. He had 2 blood transfusions also he was bleeding out his stools. He made it another week. He was a fighter. I miss him terribly. We have a son and a daughter and I now have a new Grandson, and it was not supposed to be this way. It has been 2 years and 9 months, and it still seems like yesterday. He was diagnosed August 12th and our 28th Anniversary was August 17th, and he was so sick. It was our last one. I don't mean to dissappoint you or frighten you. I am thankful he is not in anymore pain. I just miss him so much. Maybe something will happen in medical medicine and they can come up with a cure. My son is terminal also with Duchenne's Muscular Dystrophy and he is weak and frail. My husband wanted to stay strong for him, and be with him when his time comes. My son was so shocked about his Dad. His Dad was his strength and did all the lifting for him. Then one day he could not lift him anymore. My son is in a wheelchair. You keep looking up. I do. It's the only way I can go on in this life. It doesn't end here. I will see my husband again someday. RJillJ Rjillj Thu, 07 Sep 2006 00:00:00 GMT Oh, my husband had 11 chemos of Gemzar. Needless to say it did not work. We did try glyconutrients, called Ambrotose. It helped some. His blood work gave us a false hope at the point he was at. Try Ambrotose. I do believe it helped my husband live as long as he did. Depending on the severity or stage, it sure couldn't hurt. I forgot to add this part to my first message. RJillJ Rjillj Thu, 07 Sep 2006 00:00:00 GMT Hi If you can get to Rochester for a clinical trial I strongly recommend you do so. This disease progresses quickly and as you noted, there are few options. Until recently there was not much basic nor clinical research being done for this cancer partly because it is rare and hard to treat due to its agressiveness. That has changed in recent years, last 2-3 infact, and there is much activity going on. A lot is being done at Mayo and there are many good physicians that specialize in pancreatic cancer. If you need a referral just send me an email at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- I wish you all the best. AM Annam Thu, 07 Sep 2006 00:00:00 GMT  On 8/30/2006 Prettybird wrote:My husband was diagnosed in 12/o5 with this horrible disease..He had lung cancer in 1994 and was cured. now this shows up..they said there was some portal vein invasion, but no lymph node invasion..it is in the head of the pancreas..he has had gemzar with no luck...then zeloda and avastin 2 rounds...has been on nothing for about 3 weeks..have found a clinical trial at mayo that looks promising and it looks like he meets the criteria..will check with his oncologist today.. we are not ready for hospice just yet..have to try everything available first...Does anyone have any experience with the mayo clinic in minnesota...couldn't get into trial here, because they couldn't get the cancer sample they needed..it had to be clean of any tissue, cancer cells only...they did two biopsies, still couldn't get pure sample..he has copd and diabetes, so he couldn't get the whipple surgery... been married 26 years..this is the hardest thing we have ever been through..why aren't there more options available???I know what you are totaly going through, my Husband was diagnosised with pancreatic cancer June 05/ which is in operatable.  we have been everywhere looking for a cure. I was wondering if you have heard or seen these books called natural cures... we got them and in there, there is alot of info..we have just started on some of these things, as chemo and radiation has really done nothing for my husband. the only good thing is that the cancer has not spread as of yet..My husband also went to a chinese Dr in the beginning and he put him on these herb. we are not sure if that is why he is still here or not, as they gave him 6 months to live. there is also a vitamin called oncolyn that we have heard great things about and even success stories.  we wish you all the best and stay strong. bless you.                                                                                                                                                                            ining and he put him on some herbs.. Victerina Mon, 11 Dec 2006 00:00:00 GMT