CancerCompass message board discussion started by Bigsky on 4/20/2006 http://www.cancercompass.com/message-board/message/all,5146,0.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/ I have been reading postings on this message board for almost a year now. In a few days, it will be a year since my dad was diagnosed with Stage IV (mets to the liver) pancreatic adenocarcenoma (sorry for the spelling). At that time he was in terrible pain and at diagnosis he was told that people with the same condition as him usually die in about 3-6 months. As many of you know this was devastating news. My dad was only 55 at the time. He is now 56. We did tons of research and within a month he was at two of the most well known hospitals in the country. We come from a small town and wanted to make sure that he saw the best doctors possible. Still we were given little hope. My dad returned home and started chemo with our local oncologist the first week in June. After 2 treatments his pain was almost completely gone. His CA19-9 counts are almost a quarter of what they started at. Even though he has had great success as far as this disease is concerned, it has not been without bumps. In October the treatment he was on stopped working and they had to switch his chemo drugs. Thankfully, those drugs have been working since October. My dad is still working full-time, fishing, remodeling, etc. He is my hero and the strongest person I know. We are determined to fight this disease with everything we have. We have a lot of hope because my dad feels better right now than when he was diagnosed almost a year ago. I wanted to post this message because I hope that my dad's story brings some hope to someone because almost a year ago we were on the internet in a desperate search for any form of hope. We have had an amazing amount of support from friends and family. If I could say anything to someone who is on this journey, is to never give up hope, do your research, be positive, be active, have faith in yourself and your loved ones, do not give up if a treatment is not working instead request another and most importantly have faith in God and prayer. Prayer has helped our family and my dad so much! Good luck and God Bless! Bigsky Thu, 20 Apr 2006 00:00:00 GMT I have been waiting for the message like this !!! It means we can hope. On what chemo was your father in the begining and on what he is now? My friend has been diagnosed very recently with pancreatic cancer and he is having radiation and chemo FU5. Please answer. God bless you and your family. Janet Maryla Fri, 21 Apr 2006 00:00:00 GMT Janet, My dad started on Gemzar and Taxotere. He is now on Oxilaplatin, Avastin and Xeloda (which is an oral form of 5FU). We believe that the Avastin is what is helping him the most. Have your friend ask about Avastin. It is not a traditional chemo, it is a growth inhibitor. It was approved for pancreatic cancer literally 1-2 days before my dad started getting it. The side effects from Oxilaplatin are very harsh, however the side effects from Avastin are fairly mild. Avastin seems to be one of the new break throughs in pancreatic cancer. If I can be of any further help please ask. I have done a lot of research and am aware of some new things that are on the horizon that may make a difference for people with pancreatic cancer. At least I pray with all my heart that they will. After all prayer does as much if not more than medicine can. My dad cannot have radiation because he already has mets to the liver. God Bless and please let me know if you have any other questions. I promised God that if he saved my dad I would do as much as possible to spread hope to others. Carrie Bigsky Fri, 21 Apr 2006 00:00:00 GMT Thank you for this information. It is very helpful. Neither I or my friend are good at researching. There is so much information, and it is hard to distinguish what's new what's old. Do you have specific websites you use to search for information? When we talked to the doctor, we talked about Gemzar and Tarceva. His doctor doesn't think that Avista has been approved for pancreatic cancer, it is still in clinical trial. How is your father doing with all this medications? It he sick a lot or can have still decent life? It is all new to us and it is SO SCARRY! You and your father are in my prayers. Janet Maryla Sat, 22 Apr 2006 00:00:00 GMT It's me again. I know that my writing is somewhat primitive and lacks expression, and the reason for this is that English is my second language. I would like to explain it in case you may wonder. And of course I meant Aviston, not Avista. Have you done any reseach on alternative medicine? Have you heard anything about glyconutriens? Thank you, Janet Maryla Sat, 22 Apr 2006 00:00:00 GMT Hi, I am new to the board, I have read your postings and just wanted to reach out to someone going thru the same ordeal. My 67 yr. old father was diagnosed with Stage 4, locally advanced, resectable pc right after X-mas. He became jaundice in mid Dec. with no pain. His first doctor's visit was the day after X-mas. It took almost 2 wks. to get his diagnosis. He had a Whipple on Feb. 1, 2006. At the time of surgery we were told that his tumor was sitting on the portal-vein which made it unresectable, but they were already committed to the surgery and had to proceed. They removed most of the tumor. His cancer had spread to nearby lymph-nodes. His recovery was a little tough, but my dad is so strong and determined. He left the hospital exactly 15 days later!!! He has since started radiation and chemotherapy thru a pic line and is nearing his 5th and final week of treatment. He has done remarkably well, with very little side effects. We had a hard time getting the diabeties in check, but are managing it better now. I have started doing more research on better for advanced treatment options. I have been looking and the Cancer Treatment Centers of America site. Can you recommend and new treatment information either for chem or radiation? My thoughts are with you all. Veronica in CA. Cancercure Sun, 23 Apr 2006 00:00:00 GMT Your info. is very helpful to my family. I know what your family is going through because my family it is the same thing. First my dad had the cancer wrapped around his heart. Right before Christmas the Doc."s said he beat it. then just a few months ago he was told that he now has pancreatic cancer. .It has been a very long road for my family not to mention what both of my parents have been through. But your story i believe was ment for my family because we so desperatly needed to hear some positve hope. Thank-you. P.S. My dad is a fighter and is NOT giving up. he always is telling funny jokes. He is my HERO, and I love him and my mom more than words could ever say Babybarney Mon, 24 Apr 2006 00:00:00 GMT I have been readingthis posts and I want to reiterate that there is hope! My husband was diagnosed with stage 4 PC (mets to liver and lung)over 25 months ago. (He was given up to a year to live). We found a wonderful doctor who has put George on many drugs- Gemzar, Avastin, 5-Fu, tarceva, Taxotere, Xeloda. The recent drug that was added was Cisplatin (a tumor on his colon surfaced in October) because the cancer had gotten worse. While it is a successful drugs, the side effects are the harshest hands down. In fact, after 4 treatments, we are stopping the Cisplating bc my husbsand suffers greatly for weeks after receiving it. It has been a long and tough jouney with good days and really bad ones but the most important thing is to never lose hope. Miracles happen every day. Attitude is everything and it will make the difference. Pickle4 Wed, 17 May 2006 00:00:00 GMT My dad has pancreatic cancer. He had a whipple done 2 years ago that went very well. He bounced back after the surgery and then again after 6 months of chemo/radiation (he was in a clinical trial) Now, 1 1/2 years later we get the news that the cancer has spread to the liver. He is on Gemzar---once a week. The first CAT scan is not until the end of June so we don't know how well it is working. We had a second opinion yesterday and that Dr. believes that Gemzar is the best possible choice. We brought up some of the other drugs mentioned here but he says that they are not proven and also have harsh side effects. He wants to see how the Gemzar does for a while. From all the research I have done, I think Gemzar is probably a good choice. Both Dr.'s said that if it stops working we may want to look at research drugs. I am praying that something new and wonderful is invented by the time we need it. Cancer is so devastating. My dad is 62. Has never smoke or drank. He plays tennis every day. Cancer is not picky about who it chooses. Lynnmarie Thu, 01 Jun 2006 00:00:00 GMT My name is Kim and my father was just diagnosed with Stage IV pancreatic cancer. It is unoperable and has spread to liver and small intestines. He had a feeding tube inserted and will begin chemo shortly. Basically, average life span with stage IV is 6 months - 1 year is what we have been told. Up until 4-1-06 my father was very active, full of energy and had really never been sick in his life. My mother passed away a few years ago after a very long bout with colon cancer which she got at the age of 29. I do belive in hope and inner faith. In 1972 they told my mom she had 6 months to live and she did not pass away until 1999. I believe my fathers condition is worse mainly due to the fact they could not remove any of the mass. My family feels if we have at least 1 year we will be thankful. He has gone from 210 lbs to 163 lbs mainly because his tube has falled out twice. I hope now they have figured it out, and he can live more of a better quality of life that he has remaining. I dont know what I am asking for, I guess just support and hope Thanks Kim Woodstock, Georgia Kimmie0430 Wed, 21 Jun 2006 00:00:00 GMT Thank u bigsky for your message and sharing the info. my mom will begin chemo soon after the whipple procedure. knowledge is power. thank you. Oliver4222001 Thu, 22 Jun 2006 00:00:00 GMT To all who have replied to this message. I hope everyone is keeping strong. My dad is 5 months out post whipple. He has started his second round of chemo on Gemzar. He has only had 2 treatments, and seems to be tolerating it very very well. I feel there is hope after reading how remarkably well some people respond to their surgery and rad/chemo. Anyone who can beat this for more than a year is blessed. My thoughts are with everyone. Please let me know if there any promising new treatments out there. God Bless. Veronica, CA. Cancercure Thu, 20 Jul 2006 00:00:00 GMT