CancerCompass message board discussion started by Carolann on 11/2/2004 http://www.cancercompass.com/message-board/message/all,1372,0.htm Wed, 08 Oct 2008 00:00:00 GMT Wed, 08 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I do not hear too much about gallbladder cancer. I am told it is rare, my mom was diagnosed in June, with no prior symptoms. They removed her gallbladder and found it had spread to the liver and her bile ducts. They inserted stents to help the bile drain. She has had a bag on since then. They tried chemo, with no success. She had a stroke last month which effected her speech and her right side. Then last week she had another mini stroke. They did another MRI and they said the cancer has spread all over the liver and they gave her 1 to 2 months to live. We had to call in Hospice, she is home now and we all take turns caring for her. She is 75 years old, and has been healthy her entire life. Everyone tells us that gallbladder cancer is very rare and there are no cures. It is very hard to just watch her die. Anyone with any information or other help out ther please reply. Thanks, Carol Carolann Tue, 02 Nov 2004 00:00:00 GMT Dear Carol, I was sad to read your post about your mom. I am 53 and had a routine gallbladder removal 1 year ago and then we were all stunned by the cancer diagnosis. I had one large golf ball sized gallstone (which now I learn was an indicator of high risk). I then had a very radical abdominal surgery at OHSU in Portland. They feel they got "clear margins". It has taken months for me to get well enough to begin phys therapy (complications from peritonitis from the original laproscopic surgery). I have researched and read a lot and was hoping to find something I could do proactively for myself rather than waiting for the CT scans and bloodwork every 3-4 months. I am taking an alternative product called protocel. I have put the various web info in one email so if you are interested in seeing that, I would gladly email it to you. It gives me some hope because of the other survivors that I have personally spoken with, and that is what I was looking for. What was so compelling to me is that the biochemist and the survivors are willing to share information but without any selling or monetary benefit for themselves. I wish you and your mom the very best. Cali in Oregon Cali D. Sat, 06 Nov 2004 00:00:00 GMT It is to late for my Mom now. Her cancer has spread rapidly, she is dehydrating, she cannot swallow and eat anything. Her body is shutting down. It is so sad to see her. She is down to about 90lbs, and all we can do now is try to keep her comfortable. Thank you for responding, and good luck with your condition. I hope they find a cure soon for this terrible cancer. Good Luck, Carol Carolann Mon, 08 Nov 2004 00:00:00 GMT Hi Carol, Thanks for your note, I am so very sorry to hear about what is happening with your mom. Sincerely, Cali Cali D. Mon, 08 Nov 2004 00:00:00 GMT Dear Carol I am writing to let you know that I feel your pain, but please don't question the fact. Your mother had cancer, so be it. We are all going to die, but the only difference is that you know in advance what will make her die. Take my advice and try to make it easy for her, no one knows when she is going, but try to enjoy each and every moment you spend with her as will all be memories later on. Tell her she did good in her life and that you are all there for her, she deserves it. By the way; I lost my mother 30 days ago because of Colon cancer...May God be with you. Shaamel Abu_feras60 Mon, 08 Nov 2004 00:00:00 GMT Thank you for your words. My Mom passed away last night. I told her I loved her and that it was okay for her to go and be in a better place where there was no more pain. I know she is in heaven now. God Bless you. Carol Carolann Tue, 09 Nov 2004 00:00:00 GMT I have never found a posting specifically aimed at gallbladder cancer so when I stumbled upon this one I had to check it out. I was sorry to read of Carol's mother's passing, however your message rang a bell with me. I am 59 and was diagnosed with cholangiocarcinoma (gallbladder) 2 1/2 years ago. Like you, I went in for a laproscopic removal of my gallbladder. I had a sonargram (sp) prior to the surgery and they noticed something on my liver. So, a month later, I went back to have that growth removed. Like you, we were blown away by the fact that it was cancerous and had spread. The surgeon cut away all the cancer he could see (7 hour surgery) and I underwent chemo and radiation therapy to track down microscopic cancer cells left. Anyway, I was given 4+ months by my oncologist. That was over 2 years ago. As I was given no hope, I have just been going in every 3 months for the scans and bloodwork like you mentioned. So now that I have a more optimistic outlook, I am interested in the protocel you talked about. Thank you. Linda/Salt Lake City L W. Sat, 15 Jan 2005 00:00:00 GMT Hello...my mother was diagnosed in late October with gb cancer...she had surgery on the 6th of Dec. and all they removed was her gallbladder...it had spread to her liver and bile duct...her oncologist said with or without chemo he would say 6 months, give or take a couple months. Would love to hear who your doctor was and where he was located, and also any treatments or surgeries that you have had...hope to hear from you soon...thank you so much...Scott Scooter6922 Sat, 15 Jan 2005 00:00:00 GMT Hello. My mother also has gb cancer and I would like to talk with you if you don't mind...would like to hear about what you have experience and possibly offer any hope or encouragement...it has also spread to her liver and bile duct...any info you could offer would be very appreciated...thank you very much...scott Scooter6922 Sun, 16 Jan 2005 00:00:00 GMT Hi Linda, I'm responding to your note at Cancer Compass. So weird isn't it to actually find any postings that sounds familiar to your own experience? Yours and mine sound very familiar! I have some information that I would gladly forward to you in the hopes that it might resonate with you about what I have been doing to hopefully help to save my life. My heart goes out to you. Take care, Cali Cali D. Mon, 17 Jan 2005 00:00:00 GMT Hi Scott, I'm so sorry to hear about your mom's experience. I would be happy to share info on what I have been doing in very similar circumstances as your mom's, (except they felt they had removed all cancer in my abdominal surgery) I'm new to this posting thing and so if you would rather contact me directly that would be fine. I have some info in the form of an email that I have forwarded to a couple of friends that I would gladly forward to you. It is the result of several weeks of research and is the path I have chosen to try to save my life, (and have been doing this since mid October 2004) Believe me I'm not selling anything, only wishing to share what I have learned.....Best wishes to you and your mom, Cali Cali D. Mon, 17 Jan 2005 00:00:00 GMT Hi Cali, My mother also just got an almost similar diagnosis as the other I have read. I am looking for any information anyone can share. My mother is 65 years old and she had a stroke 12 years ago and is paralyzed on the left side. She just never gets a break. Because of her Paralysis, no one wants to do any surgery on her. I have been told that chemo and radiation are not an option for this type of cancer. I was surprised to read that some people had been treated with these treatments. The Doctors have given her a survival time of a few hours to 3 months. I find this hard to believe because she doesn't appear to be ill. The one thing that I wonder is if her paralysis may be blocking the pain. I feel so sad and helpless. Any information would be very appreciated. Jylisa325 Thu, 03 Feb 2005 00:00:00 GMT Hi Jill, I just got your message and I am sorry to hear about your mom's situation. I am in Oregon and it's the end of a long day so I was wondering if I can respond to your question hopefully tomorrow? My email add is cali@bendbroadband.com and I'll do my best to get a note off to you tomorrow, if that's okay? Take good care, Cali Cali D. Thu, 03 Feb 2005 00:00:00 GMT Dear Cali, I hope you are feeling OK. I also live in Portland and was diagnosed with Gallbladder cancer only 2 days ago after my gallbladder was removed. Could you, please send me the information you are referring to. Really appreciate it. Sickman Sat, 26 Feb 2005 00:00:00 GMT Hi David, Thank you for your note. I'm so sorry to hear about your recent diagnosis...It's a terrible shock isn't it? When you think you're just having "routine" gallbladder surgery! I would definitely be happy to let you know what I have done and what I am doing. Thanks and keep your chin up, Cali Cali D. Sun, 27 Feb 2005 00:00:00 GMT Hi Cali, I just found this site, and looked at the postings, my Father had been diagnosed on september 04, he had surgery and removed the tumor, but a CT scan on February had shown that the cancer had spread to the liver and one lung, he was taking Xeloda pills only 6 weeks after his surgery, eventually that did not help, now he is getting treated with gemzar, Cali could you please send me info about the protocel you mentioned, can he use it while under chemo treatment. Thank you very much! Tony1930 Thu, 03 Mar 2005 00:00:00 GMT Hi Cali, I hope your going ok. My 59yr old mother has been diagnosed with GB cancer after having gallbladder removal surgery. The cancer has spread to her lymph nodes but at this stage her liver is clear? We think. The doctor has recommended chemo and radiation therapy. Any info and the experiences your having would be much appriciated. I'm in Melbourne, Australia. Kate24 Sat, 12 Mar 2005 00:00:00 GMT Hi Linda, your message gave me hope. My mum is 59 and has just be diagnosed after gallbladder removal operation. They have recommended chemo and radiation as cancer is showing in the lymph nodes but not the liver or bile ducts. If you don't mind I like to hear about you experiences in regard to treatment. I'm in Melbourne, Australia. Thanks Kate Kate24 Sat, 12 Mar 2005 00:00:00 GMT Hi Tony, I was out of town for several days and am trying to remember if I responded to your note? I think I forwarded the information about the Protocel but am not certain. If you didn't hear from me will you let me know and I'll be happy to forward the info on what I am doing. Sincerely, Cali Cali D. Tue, 15 Mar 2005 00:00:00 GMT Hi Kate, Sorry for the delay, I was out of town for a week and am trying to catch up again. After my gallbladder removal and subsequent cancer diagnosis, they were able to do an abdominal resection surgery. I'm not sure whether that might be an option for your mom or not? I was told it had spread outside the gallbladder wall but had not gone to the lymph nodes or elsewhere. So the surgery showed "clear margins"..... They didn't do chemo or radiation with me because they said they removed everything and that chemo has not been shown to be effective with this kind of cancer. That's about all I know about that part. I did a lot of research into alternative cancer therapies and I have been taking protocel for the past 5 months and so far so good. If you would like me to forward a copy of my email with the various information about protocel, etc., I'd be happy to do that. I truly believe in it and what it has done for other people. Just let me know your email address and I'll forward. Try not to read too much about the statistics on this cancer as it seems so much of what they know is based on the cancer being found in older women/men. I'm 54 and your mom is only 59, hopefully that is in our favor as compared to not finding it until you're in your 70's or 80's. Keep your chin up and I wish you and your mom the best, Cali Cali D. Tue, 15 Mar 2005 00:00:00 GMT Hello Carol, My Mom has the same case yours passed through, except that she doesn´t have any stroke. She is 77 yo and has always been an incredibly healthy and happy person. But a couple of months ago she started complaining about lack of energy and apetite. She also had strong pain that she thought was her gallbladder that needed to be removed. So she went to prepare for the surgery when they saw a bunch of nodules in her liver. I´m brazilian, but live in Houston since 1998. My family live here in Rio de Janeiro, I flew back when my sister told me of her metastasis in her liver, almost two months ago. My Mom is at the hospital also with a stent to drain bile. She has no energy to eat or walk. But pain pain and pain. I feel so uncapable to help or do anything. It is an awful useless feeling. Wish you all the best. Angelina Angie Fri, 06 May 2005 00:00:00 GMT Dear Linda, Would you please tell me at what stage your cancer was when it was removed? Also can you send me your doctorīs name and email contact? My Mom is 77yo and has a similar story to yours. At the moment she is at the hospital with some complications from the disease. I still have hope that something can be done to revert the situation. Many Thanks, Angelina Angie Sat, 07 May 2005 00:00:00 GMT Angie: I never did get a "stage number" for my cancer. It must have been in a late stage as my oncologist predicted only months of life after the cancer was discovered. But what is a number? Maybe it was best that I didn't know as that was over 2 years ago. NEVER give up hope. My surgeon is LeGrand P. Belnap and my oncologist is Gregory Litton. They are both here in Salt Lake City, UT. I don't have e-mail info on either of them. As today is Saturday, I can call their offices on Monday and see if I can get that info for you. If able, I'll forward to you. Keep positive, especially around your mother. Linda L W. Sat, 07 May 2005 00:00:00 GMT Dear Linda, Thanks for your reply. I tried to ask her oncologist here in Rio de Janeiro, Brazil if he could recommend some surgeon to remove the tumors. Unfortunately he said that no surgeon would open her at this stage. He said that she has already too many complications from the disease (infection and her hands and feet are very swolen), besides they donīt know exactly where the primary is located. They just presume it is in the gallbladder but they couldnīt locate it from the various MRIīs and biopsy they made. I feel happy that you could get help, but we canīt. I was thinking to fly to the US but her condition donīt help either. Now she is with the tubes. But I still have hope because I believe in God. Love, Angelina Angie Mon, 09 May 2005 00:00:00 GMT Dear Cali D. I am new to the site and trying to find some sort of hopeful information for my former husband in Albany, Oregon. He is 69, blind from macular degeneration and basically alone in the world. We have kept a friendship over the 43 years I have been remarried and I want so badly to give him something to hang on to...his diagnosis was only early this week and he is reeling. He is a patient at the VA in Portland, a situation which worries me, but he has no private funds and is lucky to have any benefits. I would like to call him and explain this site and the fact that you have lots of information; then maybe he could email with you if you would be kind enough to spare the time. Please be honest with me and let me know if my plan is all right with you...this seems such a desperate disease, for all it's rarity, and it's people like you who are helping clear the darkness so that others may know where to turn. Many thanks for reading this, Nagatha, Hillsboro, Oregon Nagatha Fri, 06 Jan 2006 00:00:00 GMT Dear Nagatha, Thanks for your note and so sorry to hear about your former husband. I'm afraid at this point I can't offer a whole lot of positive information. I have been one of the most proactive people so far as trying ANYTHING that I thought would help, I've even been to a faith healer in Cleveland. To my dismay, this past April I am told that the cancer spread to my lymph nodes. I am still doing various "alternative" protocols and am convinced it has helped to keep me as healthy as I have remained. It spread again this past Sept to my neck, yet still I am hanging in there. Yesterday, I saw my oncologist and reviewed my tumor markers (which have nearly doubled again) and the CT scan which shows the lymph nodes getting larger but so far, they don't see anything in any of my other organs. And they are working fervently to get me included in a "clinical trial" of a drug called Sorafenib. I would encourage you to research clinical trials for him. The National Institute of Cancer is a great place that can pull and mail copies of all relelvant trials for any type of cancer that you can then discuss with your oncologist. Sorry I am unable to think of anything else to offer at this time, I hope this is of help to you and I wish him the very best. Sincerely, Cali Cali D. Wed, 11 Jan 2006 00:00:00 GMT Dear Cali: I appreciate so much your response to my message the other day regarding my former husband. He is scheduled for surgery at the Portland VA Friday morning to remove part of his liver, the bile duct, and at least one lymph node. I will make every effort to talk to his docs to see if they know anything about the Sorafenib trials....at this point, that might be the best we can do. You have my thanks and admiration, helping others who are frightened and ignorant of what they face with this disease. I wish you the very best, Nagatha Nagatha Thu, 12 Jan 2006 00:00:00 GMT Hi Nagatha, Thank you for your note and for your support, it is very much appreciated. I think it's encouraging that they feel they can do surgery. In my research in Nov 2003, it seemed like chemo drugs were not very effective with this kind of cancer. That's why I refused to do that. But Sorafenib is not a chemo drug and it has just been approved by the FDA for kidney cancer and the clinical trial was then opened to metastatic gallbladder cancer. So that may be his very best hope at this point. So I wish him the very best! Sincerely, Cali Cali D. Thu, 12 Jan 2006 00:00:00 GMT Dear Cali: You need not reply to this message, I just wanted to thank you again for passing along some of your wisdom. After John's surgery tomorrow morning we will of course know more, and as things move along, I may contact you again in case I learn anything positive which you may not yet have knowledge. I will share with you the fact that John and I married in 1957 and had one son together before divorcing in 1960. John was an only child and I stayed very close to his parents which meant that he and I kept a friendship of sorts alive all these years. I remarried in 1962 and my husband adopted my son, so John really was left alone in the world after both his parents died. It's a funny planet we live on, but we must always do what our hearts tell us is just so it is my husband who deserves a medal for putting up with "extras" in his marriage. It is my sincere hope that you have a good support system for yourself...I think I understand how helping others find information aids you in dealing with your own illness. You are a brave woman. Sherrie Nagatha Thu, 12 Jan 2006 00:00:00 GMT Hi Sherrie, Best wishes that everything goes well tomorrow and yes, sharing information is VERY helpful so please do keep me posted. And I definitely agree, having a great support system is worth everything and something I am so grateful to have as well. Best wishes, Cali Cali D. Thu, 12 Jan 2006 00:00:00 GMT Hi All - just catching up on the posts. I was diagnosed with gb cancer in August after lap-chole surgury- path showed adenocarcinoma in gb and in-situ cells in cystic duct. I had a seecond surgery, liver resection, lymph nodes, and remainder of cystic duct. all negative for cancer..but there was a "golf ball sized" mass in the gb fossa - so they staged it 3 at that point - I had concurrent chemo ( 5FU & Leuovarin) plus IMRT radiation which i just finished up Jan. 2006. I am a hypnotherapist and did a lot of guided imagery to clean up & shrink mass..plus to keep blood counts up and enhance general well being. I highly recommend any one to contact Vincent at www.natural-oncology.org for more information on his protocal. Tell him Janet sent you. Kindest Regards, Janet Ehypnotism Thu, 02 Feb 2006 00:00:00 GMT I also have gall bladder cancer that infiltrated my liver, was resected with clear margins, but continue to have new sites appearing on the CT scans. I am an actuary (a mathematician working with insurance statistics), and am collecting case histories with types of treatment and their effectiveness. PLease let me know if you are willing to share your history. Thank you, Woody Beckman Woodyb Wed, 23 Aug 2006 00:00:00 GMT