CancerCompass message board discussion started by Mindyrenae on 10/26/2006 http://www.cancercompass.com/message-board/message/all,7468,0.htm Sat, 06 Sep 2008 00:00:00 GMT Sat, 06 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My mom was just diagnosed with gallbladder cancer. She went in to have it removed a week ago and they found cancer in it and the lymph nodes that they took out with the gallbladder. The doctor said they have never seen this cancer before and they want to send her to a hospital in houston. We don't know if it has spread or how far. We are very scared. Can anyone offer any advise or tell me what my mom should be expecting or what kind of questions to be asking the doctor? Mindyrenae Thu, 26 Oct 2006 00:00:00 GMT I found out that i had the same cancer 1 year ago. It is not a good cancer there is not much they know. But has helped me is having a positive out look dont settle with what they have to say. I did 2 surgerys and went six weeks of chemo and radiation then went 12 more weeks of just chemo it was gone for 4 months and now is back. So i am undergoing chemo again. tell your mom to ask about having it all removed before she starts treatment there are a bunch of diffrent types of surgery they can do. Look in to cyber knife also ask about chemo and if the 5FU pump would work. she will get verry tired and not want to get out of bed but the best thing that helped me was family and friends. dont let her do the reserch have someone else do it because everything that she will read will say nothing good about the out come. by best wishes to you and if you need to talk I am here. melissa Sweetmelisa Fri, 27 Oct 2006 00:00:00 GMT Thank you for replying. If you don't mind talking about it, do you know what stage your was at when you first got diagnosed? Its just weird because she wasn't even sick, she almost put off having her gallbladder removed and now she has cancer. We live in a small town in kansas and they have never even seen it before so they are sending her to a hospital in houston. We still don't even know if her cancer has spread or anything. Mindyrenae Fri, 27 Oct 2006 00:00:00 GMT Don't despair, there are a number of patients who have survived years after GBC was discovered. I have gall bladder cancer, and was diagnosed more than a year ago (August 9, 2005) and was told that I should put my affairs in order. I researched this rare disease on the internet, and learned that I should have died nine months later, based on the statistical averages. I didn't! The problem with statistical averages is that they are based on large homogeneous populations, and that doesn't exist for this rare cancer. Even then, very few cases exist exactly at the average - and there is a wide variation around the average. In addition, medical care is better today than it was even a couple of years ago, and life expectancy has increased. I am an actuary, a mathematician who usually works with insurance statistics. The life expectancy statistics I found were not encouraging, but were a lot more complete than the statistics relating to treatment. Few studies have been completed on the effectiveness of surgery, radiation, chemo, diet, prayer, or any other type of treatment for gall bladder cancer. And even fewer provide information to the most interested population - those of use who have the disease. I hope to change that. I have developed a survey form that collects a lot of information which I then summarize in a large spreadsheet. I only have a few people in my data base now, but hope to reach many others who can provide actual treatment history to help educate both us patients and our physicians. Please go to my website, gbsurvey.blogspot.com, and contact me. I will send you the results I have obtained to date, some of which is quite encouraging. I can help put you in touch with others with GBC as well. I'll keep you in my prayers, and look forward to hearing from you. Woody Woodyb Sat, 28 Oct 2006 00:00:00 GMT I went to your site but when i e-mailed you it didn't work, my e-mail got sent back to me. Could you e-mail me first and then i will tell you everything i know about my moms condition. my e-mail is --- 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 hope that goes through so you can get it. I hope to hear from you or anyone with this cancer soon. Mindyrenae Sat, 28 Oct 2006 00:00:00 GMT I was a stage 4 when they first found it and after my second surgery it went to a stage 2. but now i am not to sure. all i know is that they say i have a 1 year life left and what is odd is that i am not sick i dont look sick and the only thing i feel is tired.... so back to treatment and they say this only has a 30% chance to work.. I have an 11 year old son how am i going to tell him that i only have one year??? any advice on how you would tell him melissa Sweetmelisa Mon, 30 Oct 2006 00:00:00 GMT This whole cancer thing really sucks! I couldn't imagine living without my mom and i am 24. I also have a 3 year old son who has heard me crying every night for the last week since we found out about my mom. I don't know how to explain it to him either. I guess just be honest and make the most out of the time you have. And fight the cancer to the very end! But your right it is crazy because my mom is not sick either! She almost didn't even have her gallbladder out. And now she has cancer. But the doctors could be wrong. You might have a lot of years left in you. But one thing that I would do if i were you, is to start making tapes or letters for your child. Something he can open from you on special occasions. I have heard of other people doing that before. But how can you only have a year left if your not even sick? Get another opinion. I will be praying for you. Mindyrenae Mon, 30 Oct 2006 00:00:00 GMT Mindy L., I've been beating the odds since April 1999. Had liver and gallbladder resection then, Mets back to my right lobe of liver and both lungs. decided holistic approach for a few years and just monitor growth. Finally the last two years I have had 4 different regimens of chemo. Things have gone back and forth shrinkage, regrowth, stablized, to very slow progression. I'm going to try 3D conformal radiation starting Monday for my liver and see what happens. I've been told 1 year and another said 6 months. I chose to to live with it and stay around for awhile. It has been over 7 years now and my quality of life really is not that bad at present. I still watch the grandchildren, do errands, and drive myself to all my appointments. I've sold and bought 3 three homes of course moved from North Dakota to Maine to Kansas all during this time. Really look in to the power of the mind and healing along with any conventional type treatments and drink lots of grape juices and pure water. Statistics say I should have been knocking on heavens gate 6 years ago. Well my new goal is to reach a decade or actually knock this cancer crap out of my body with the power of my mind and balancing my body to have inner peace and send those cancer cells a-packing. If the cancer wins this battle I'll know it wasn't the cancer that takes my life but the will of God. This cancer is very rare and responds differently on different people. De-stress your body and find the quiet time to meditate and visualize the Army of white blood cells chasing the cancerous cells out of your body or at least knocking them back behind the line you my choose to draw. Remember to stay positive and that your in control. Don't look at the statistics! Your an individual with different variables than another person with the same crap. I'm sorry I meant to just give a few words of encouragement not give a lecture. Remember" help will come to those who help themselves". A little support is certainly appreciated as well. I thank my wife and 2 children (grown-ups suppossively) Ha!Ha! and the Lord above. Oh, I don't want to forget my 2 Grand children BaBa and Pumpkin. Stay positive and don't hesitate to ask for help and strongly advocate for yourself. God's Speed to you all!! Jeff Jeffger Sat, 04 Nov 2006 00:00:00 GMT It is so good to hear from someone who has been living with this cancer for so long. I am just so worried that the doctors will tell my mom she only has 6 months to a year. She is only 56 and i can't imagine living without her. I still need her and am not ready to let her go yet. We really don't know much about my moms condition. We live in a small town here in kansas and the doctors have never seen this cancer before. So they are sending her to houston. She has her first apppointments this week with the doctors there. I will let you know what they tell her then. Mindyrenae Sun, 05 Nov 2006 00:00:00 GMT I have posted the treatment package and current situation regarding my sister in law. If you need other specific information please advise and I will supply. You are indeed correct when you say that little documented treatment plans have collected to establish an effective plan and better defined prognosis. Ksakathy117 Sun, 05 Nov 2006 00:00:00 GMT Jeff and others- I have been collecting case studies including effective treatments for several months. Please contact me and I will send you the information received from others and send you a form to add your experiences to the survey. My website, www.gbcsurvey.blogspot.com includes my email address. If it didn't work the first time, please try it again. Woodyb Thu, 09 Nov 2006 00:00:00 GMT Mindy - I just found your initial post, even though it hasn't been long. I'm so sorry for you and your mom and all of your family in dealing with this diagnosis, and I remember how blindsided I felt almost 6 months ago when it happened to me. I was 58 at diagnosis, healthy and active when my bile duct backed up, sending me to the hospital and ultimately to surgery to clear the blockage. My gallbladder was removed, and gallbladder cancer was diagnosed. Recovering from the surgery these almost 6 months has gone well, although I still have tenderness. The first post-surgery CT scan, 6 weeks later, did not indicate spread of the disease, and I had a second clean scan in September. I go again next week, and hope to get a good scan again. I feel good, I'm back at work, and except for dealing with the diagnosis and recovery from surgery, life is almost "normal." So, as so many of those posting here have said, the progression of this disease is different for everyone. I am so glad that your mother is going to Houston to see doctors familiar with the disease, because that seems very important. So, keep up hope, don't believe everything you read about the disease, remember that everyone is different in their progression, and educate yourself as much as you can without getting depressed. Best to you and your mother, and keep us all posted on her progress. If you go to my blog (www.dahlborg.blogspot.com), you will find links to some of the places to get additional information. Lynne Archivist Sat, 11 Nov 2006 00:00:00 GMT Hi, My husband was diagnosed with the gallbladder cancer at the end of September. He had no symptoms except that he turned yellow and that is when he went for CAT scans and such. He began chemo two weeks ago. It took us a while because the drs also diagnosed him with PSC, Primary Sclerosing Cholangitis. People with PSC also known as Walter Payton's disease only have about a 10 year life expectancy. It is an autoimmune thing. The DRs tried to decide whether to do a liver transplant and remove the gallbladder too. But cancer is in lymph nodes also and he has been rejected from the liver transplant because of the risk of recurrence of the gallbladder cancer. So if cancer doesn't get him the PSC will. I found out that mostly women get gallbladder cancer and that was too strange for my understanding. I am rambling on. Anyways he is being treated with GemZar and then another chemo with radiation will be started several weeks after he gets through the Gemzar. They hope to shrink the tumor which is about 6.5 cm. and then remove it. Drs are concerned about surgery causing liver failure. So we stand here with one foot in the grave and one on a banana peel. My husband is only 51. We have been married 33 years. We are lucky to be at Moffitt Cancer Center in Tampa. It is only 40 minutes from home. Everyone there is absolutely fantastic. My husband's dr even hugs him when we are done with our appt. We have been adding some holistic remedies to his diet. We just bought a juicer and we will be juicing too. It feels strange though emotionally. I feel very numb. I am trying to stay strong for our family. My son's who are 24 and 26 are very upset. My husband's mother lives with us. She is 80 and has Alzheimer's. She is still pretty lucid but this crisis has effected her very badly. I try not to think about what life will be like without him. It is too scary. I always thought that I would be the one who got cancer since every woman on my mother's side of the family has had every kind of female organ cancer that is known. I am not sure what I am going to do to cope with this. Saratzi Sun, 26 Nov 2006 00:00:00 GMT I am a 61 year old grandfather who was diagnosed with gall bladder cancer in august of 2005. Yes, it is less common for men to get this cancer, but about 40% of GBC are men, or about 2,000 a year in the US. There are a number of people who have shared their history with me, and I would be pleased to provide this to you. Please visit www.gbcsurvey.blogspot.com where my background and email address are posted. There are a number of people with GBC who write on this and other bulletin boards who can share experiences and help you through this difficult disease. Gemzar and Taxotare have worked for a number of people, at least for a while. There are other chemo drugs that have been effective for other patients. The truth of the matter is that no one, even the best of medical professionals, know how long any of us will live. Keep a positive outlook, and talk to others of us who have been on this difficult road for a while. Woody Beckman Woodyb Mon, 27 Nov 2006 00:00:00 GMT  On 10/26/2006 Mindyrenae wrote:My mom was just diagnosed with gallbladder cancer. She went in to have it removed a week ago and they found cancer in it and the lymph nodes that they took out with the gallbladder. The doctor said they have never seen this cancer before and they want to send her to a hospital in houston. We don't know if it has spread or how far. We are very scared. Can anyone offer any advise or tell me what my mom should be expecting or what kind of questions to be asking the doctor?Dear MindyRenae:I am a native of Minneapolis, Kansas but a transplanted Oregonian for most of my 67 years.My former husband at the age of 70 was diagnosed with GBC last year and was sent to the VA hospital in Portland which works in conjunction with the Oregon Health and Sciences University next door.  His gall bladder was removed immediately and found to be full of cancer through every layer.  He also had a liver and lymph node resection and the plan was to start chemo and radiation ASAP.  He was at Stage II at that point.  Unfortunately, he developed a serious wound site infection which took nearly three months to heal, so the window of opportunity was closed for that further treatment.John was sent home and told to return for 3month checkups, and so far, CT scans have shown him to be absolutely clear.  It will be a year of returned good health soon.  I wanted to share this with you to add our knowledge of this cancer.  It certainly is true that the published material about GBC is very negative, so people who are stricken need to know that others have survived and flourished. I send you my best hopes that your mother will come through this frightening siege with restored good health....it is obvious that you adore her and are feeling lost. Sincerely,Nagatha39   Nagatha Mon, 18 Dec 2006 00:00:00 GMT How's your mom doing?I just found out tonight that my mom (51) has gallbladder cancer and it's also spread to the liver and colon. She's having a biopsy in two weeks when she'll also have the GB removed.I'm very scared, especially for her... I feel helpless. Keary Lars. Thu, 25 Jan 2007 00:00:00 GMT Hi, How is your husband doing.....my mom's tumor at the time she was diagnosed was 8 cm - gallbladder and bile duct cancer; she did 3 rounds of the Gemzar and now the tumor is 15 cm.......I don't know what to expect;we are taking her to Sloan Kettering next week. Her oncologist who put her on gemzar now prescribed tarceva and told us that it probably won't work and that there was nothing else that they can do for her.....she is on pain killers but still can eat. Mobility is limited because of the pain and she looks pregnant....enlarged liver causing swelling, porcelained gallbladder and pancreas is deformed as a result (latest CT scan)  Janev Fri, 02 Feb 2007 00:00:00 GMT My mother has been diagnosed as having a moderately differentiated adeno carcinoma gall bladder. It was diagnosed when we decided that the gall bladder stones she was having should be removed. These had been residing there for some 8 years but after the initial trouble she had, they just went silent untill recently. When the surgery was done, they found adhesion with the surrounding tissues. The cancer was diagnosed with the biopsy. The doctors were not very clear as to the extent of the spread and decided to go for chemo. The medication has been very upsetting and weakened my mother, besides all the pain that goes with chemo. She had extreme ulceration of her GI tract,right from the mouth to the rectum. I wish to see if any alternate treatments are possible. Some web sites talked about a "shake and bake" method but no one gave a description about it. Wonder if anyone can help? Gamdoor Mon, 09 Apr 2007 00:00:00 GMT Hope all is still well. My mum was found to have the cancer 3 months ago and had her gall bladder, lymph nodes and some liver removed and is now having a 6 month course of chemotherapy. It is devastating to us all as she had no symptoms. I was due to leave the UK this summer for 3 years with my family to work in the USA, even though my mum is doing very well I don't know what to do. She would tell me to go but all the research I have done shows a bad picture  this disease. I have not heard of anyone like you yet. What I want to know is, even if my mum is okay for a while, is she likely to still be ill and need me? We are very close and I can't believe I am still contempleting going but it affects my husband and children too if we stay. If you don't mind, I would appreciate your view. Mugwai Mugwai Thu, 24 May 2007 00:00:00 GMT My mother, a healthy 60 year old, was diagnosed with Stage IV gallbladder cancer in March 2007 after having her gallbladder removed. Like many of you, she had no symptoms and now that she has started chemo (Xeloda) and radiation (given daily), her down times are really only related to the treatments. I'm glad I stumbled upon this site, as we're extremely interested in alternative treatments. Has anyone done research on immunotherapy? We found a publication on treatments done in India that greatly improved a GBC patient's survival rate. We are also interested in other chemotherapy drugs used to treat GBC, so please feel free to contact me about this, as we are interested in hearing other experiences. I'm 26 and never thought I would say my mother has cancer. But I'm grateful that many of you have come to share your stories and opinions. You guys give us hope! Abigaila Fri, 25 May 2007 00:00:00 GMT Jeff,Hope you are still doping well.  My mother was jsut diagnosed laste week and we chose not to tell her about the prognosis.  She knows she has this and is not a candidate for surgery as it spread too much.  What holistic approach did  you take.  Did you do any chemo?  Any advice is appreciated.  Sherry Smlev Thu, 07 Jun 2007 00:00:00 GMT Hi there - some time has passed, and I am wondering how your mom is doing?  My mom was just diagnosed with GBC that has Metasized in the Liver and they are not giving her much hope.  She is ionly 61 and is not sick and almost did not have her Gallbladder removed either.  Crazy how something so lethal has no symptoms...What have they been doing for yours and has anything helped?  Sherry Smlev Sat, 16 Jun 2007 00:00:00 GMT  On 11/4/2006 Jeffger wrote:Mindy L., I've been beating the odds since April 1999. Had liver and gallbladder resection then, Mets back to my right lobe of liver and both lungs. decided holistic approach for a few years and just monitor growth. Finally the last two years I have had 4 different regimens of chemo. Things have gone back and forth shrinkage, regrowth, stablized, to very slow progression. I'm going to try 3D conformal radiation starting Monday for my liver and see what happens. I've been told 1 year and another said 6 months. I chose to to live with it and stay around for awhile. It has been over 7 years now and my quality of life really is not that bad at present. I still watch the grandchildren, do errands, and drive myself to all my appointments. I've sold and bought 3 three homes of course moved from North Dakota to Maine to Kansas all during this time. Really look in to the power of the mind and healing along with any conventional type treatments and drink lots of grape juices and pure water. Statistics say I should have been knocking on heavens gate 6 years ago. Well my new goal is to reach a decade or actually knock this cancer crap out of my body with the power of my mind and balancing my body to have inner peace and send those cancer cells a-packing. If the cancer wins this battle I'll know it wasn't the cancer that takes my life but the will of God. This cancer is very rare and responds differently on different people. De-stress your body and find the quiet time to meditate and visualize the Army of white blood cells chasing the cancerous cells out of your body or at least knocking them back behind the line you my choose to draw. Remember to stay positive and that your in control. Don't look at the statistics! Your an individual with different variables than another person with the same crap. I'm sorry I meant to just give a few words of encouragement not give a lecture. Remember" help will come to those who help themselves". A little support is certainly appreciated as well. I thank my wife and 2 children (grown-ups suppossively) Ha!Ha! and the Lord above. Oh, I don't want to forget my 2 Grand children BaBa and Pumpkin. Stay positive and don't hesitate to ask for help and strongly advocate for yourself. God's Speed to you all!! Jeff Hello, I have just been diagnosed with GBC and found this inforamtion very helpful and encouraging. Thank you for that! I feel better already just reading what you wrote. I would like to know how you are doing now. Thank you, Kathy rkidsrcats Thu, 12 Jun 2008 00:00:00 GMT