CancerCompass message board discussion started by Marvin M. on 4/2/2003 http://www.cancercompass.com/message-board/message/all,681,0.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/ Recently diagnosed with gallbladder cancer. Looking for where to go for treatment, options, etc. Marvin M. Wed, 02 Apr 2003 00:00:00 GMT This message is posted several months after your posting date so I hope you are currently in some treatment. I was diagnosed with the same in September of 2002. I went in for a simple laproscopic surgery to remove my badly diseased gall bladder and tests showed cancer that had spread into my liver. I had a liver resection to remove a cancerous growth followed by chemotherapy and radiation treatment. I have an oncologist who monitors my situation with periodic C/T scans and office calls. I am in Salt Lake City. I hope you are able to get good care where you are located. L W. Sat, 17 Jul 2004 00:00:00 GMT I saw your message from a couple of years ago and was wondering how you are doing and what type of treatment you had. Woody Beckman Woodyb Wed, 23 Aug 2006 00:00:00 GMT Woody: To date, I am doing fine. Of course my life has changed, but I am grateful to be here to talk about it. My last c/t scan in July '06 showed no new growth or changes. My 6-week treatment in Oct/Nov.'02 consisted of chemo (5fu) and radiation. For the past 3 1/2 years, my oncologist has been following up the treatment with periodic visits and tests. May I ask what your interest in GB cancer is? LW L W. Thu, 24 Aug 2006 00:00:00 GMT I was recently diagnosed with stage IV gallbladder cancer, so I am always happy to hear about longterm survival/thriving from others with GBC. What stage did they list you at when you were diagnosed? Do they consider you in remission? Archivist Thu, 24 Aug 2006 00:00:00 GMT Lynne: I am sorry to hear of your cancer. When was it diagnosed and have you had any treatment yet? When I was diagnosed, my oncologist didn't mention what stage I was at and I didn't think to ask. He did say I had only months left. I was shocked and could only think that I had a huge agenda to take care of, both medically and in my personal life. I have been maintaining periodic check-ups with this oncologist since Oct.'02. He has never used the word "remission" with me. He did say that if my c/t scans continue to show "no change," I would only need annual visits and tests. I know I am not "cured" but I am trying to make the most of what time I have. I have been trying to take good care of myself--good diet, regular exercise, and a positive outlook. One year has turned into two, then three, and now I am half way through my fourth year. Good luck to you. Linda L W. Fri, 25 Aug 2006 00:00:00 GMT Linda - Thank you so much for your response. I am heartened to hear your story, and hope you continue to do well. My cancer was diagnosed in late May of this year, and I have been recovering from surgery, initially to clear a blocked bile duct, and then to remove a diseased (and cancerous) gallbladder. The pathology reports indicated that the cancer had spread not only to my bile duct, but also to a spot on my duodenum and to a lymph node. Six weeks later, my cancer marker was down and no new spread was seen, so I haven't started chemo, but I know it's in my future. I am so amazed that you have gone so long without additional treatment, and would like to hear more of your story. If you are interested, you can read more of my story at my blog, www.dahlborg.blogspot.com. Thanks again! Archivist Sun, 10 Sep 2006 00:00:00 GMT Linda - I would really, really like to know more of your story now. I went for a CT scan last week, just shy of 4 months post diagnosis. The scan was clean, my CA 19-9 numbers continue to stay low, and my oncologist said to come back in 2 months for another check. If that one's clean, then he said I'd be on a 3 month checkup. He also said, for the first time, that about 10% of those diagnosed with gallbladder cancer have slow progression of the disease, and it looks as if I might be one of those. (This is the first time he mentioned that possibility.) I'm relieved, cautious, and curious about others who might fit the 10%. You are the only person I know of from the discussion boards who is a longterm survivor, so I'd really like to know more about what tests they do with you, and how your doctor characterizes your illness. I provided my blog address earlier; I know that this site won't reproduce email addresses, but you could contact me through my blog if you are willing to be in direct contact. Thanks! Lynne Archivist Tue, 26 Sep 2006 00:00:00 GMT Lynne: I have tried www.dahlborg.blogspot.com several times and only get "page expired" and "error." I am not blog-proficient so perhaps I am doing something wrong. I will continue to see what I can do but I want you to know that I am most interested in your situation and am willing to give you any input I can on my history. Linda L W. Tue, 03 Oct 2006 00:00:00 GMT Linda - Thanks for your response. I don't know why my blog isn't coming up for you, but I had another thought about being in touch. If you go to the discussion board on the Johns Hopkins site, you will find email addresses printed with messages. I've posted there a few times, and my email address should be accessible. Thanks! Lynne Archivist Tue, 03 Oct 2006 00:00:00 GMT I am glad to hear that your scans have come back clean, I can only wish that mine would have but I am not giving up hope. What type of diet are you doing. I am willing to do what I can to kick this thing in the butt. I went 6 months of treatment and then 4 months clean and my last scan showed that it is back so i am doing the chemo thing again. so if you can tell me what it is that you did that might have helped i would love to hear....... right now I am just so tired of having people tell me how sorry they are and that they have never seen someone as young as me get this cancer.. some words of advise would be great. thanks melissa Sweetmelisa Mon, 06 Nov 2006 00:00:00 GMT Linda- I haven't been to this board in a while, and must apologize for not writing back earlier. I also have this cancer, diagnosed in August 2005. I am an actuary and am attempting to collect case histories so we can learn what has been successful (even if only for 6 months), thus giving others a chance to duplicate our successes. There are 11 people in my data base, including Lynne. I understand that you have had trouble getting to her website, so you may also have a problem with mine, www.gbcsurvey.blogspot.com Please write and I can share the data I have received. Woody Woodyb Thu, 09 Nov 2006 00:00:00 GMT Melissa - I read your entry a few days ago, and my heart has been sick for you with your struggle with this disease. I haven't had time to answer sooner, and I've been struggling with what to say to you. I wish I could say I'm doing something that really works, but I don't know that anything I'm doing is making a difference. Food? I'm eating pretty much as I was before my diagnosis - low fat, lots of vegetables and fruit, probably more sweets than I should %>). One new thing is that I am drinking Flor-essence tea (similar to Essiac tea) which is an herbal tea designed to work as a detox. I drink it first thing in the morning and last thing at night, as directed, and buy it at the health food store. In my life generally, I'm trying to keep my stress down, and I'm walking almost every day, and meditating a few times a week. And, I'm writing a blog (as Woody mentioned in his message this week) that I described a few weeks ago in an earlier message in this chain; I'm not sure if you can access it. There's lots more information about my emotional and physical experience there. You can email me directly at dahlborg at aol dot com (I'm trying to see if I can around this site's screening of email addresses . . . ) Tell me more of your story, or where I can read about it. Good luck, Melissa. I hope we can be in touch by email. Lynne Archivist Sat, 11 Nov 2006 00:00:00 GMT Dear Michelle, I just found your message. Maybe the treatment I have received will be of interest to you. March 16, 2007 I was diagnosed with stage iv gallbladder cancer (cancer in lungs, liver, bowel, colon, lymph nodes, gallbladder and a large 7 inch tumor mass in my peritoneum). Doctors in San Diego gave me about three months to live. Don't ever let statistics overwhelm you. For two weeks my husband and I researched around the clock; flew overnight to Sloan Kettering in NYC to confirm it was inoperative; had MD Anderson in Houston look over my Pet Scan and confirm their systemic chemo regiment for nonresectable gallbladder cancer; and finally found the doctor at the Stanford Cancer Center who has saved my life. His chemotherapy treatment (oxaliplatin/avastin/xeloda) killed over 70% of the cancer after 4 cycles (each 3 weeks long). With such stunning results from chemo, Stanford agreed to do radical surgery on July 11, 2007 to remove the gallbladder, 4 liver segments, lymph nodes (cancer in the colon and bowel seen on the most recent cat scan was dead by the time they opened me up.) A new cat scan on August 10, 2007 showed no visible cancer. I'm almost finished with another 4 cycles of oxliplatin/avastin/xeloda to wipe out any undetectable cancer cells. My CA 19 blood marker was down to 1.2 on November 1, 2007 (normal is anything less than 35). Another cat scan on December 10, 2007 will show us what's happening. I don't presume to think I'm cured, but I feel so blessed by God's Grace, and humbled by this experience, and so much in awe of my medical team at Stanford Cancer Center I wanted to let you know. Perhaps it will inspire you to fight and to know that there is potential hope out there for this deadly cancer. God bless you. Edith in California Edith in California Sun, 11 Nov 2007 00:00:00 GMT I am sorry for that you have cancer.  Ist step is to find a good oncologist who is truthful with you and is willing to help.  The chemo drug that is working for my dad is Gemzar.  This drug is normally used with pancreatic cancer.  2nd is to realize that you either are having or will have depression that affects your eating and your fight for life.  Ask your doctor about a medication for depression now before you are completely over-whelmed.  Another suggestion is to get counseling with a grief counsler.  He or she can help you clarify how you want to deal with this cancer.  This should have been first step - ask God what he wants of you and listen with your heart and soul.  Once you do this - the rest falls into place.  My belief is that God doesn't cause our calamities but he will work through the diseases to give us so much more.  You are in my prayers.  Charlotte K. charlkyl Fri, 30 Nov 2007 00:00:00 GMT  Edith- My 59 year old dad was diagnosed with advanced GBC in November 2007.  It had already spread to his liver and basically was sent home to die.  We have tried a ton of naturopathic treatments but his tumor markers keep going up.  Your post has given me a lot of hope.  Congratulations on your amazing outcome!   I have just been to the Stanford Cancer Centre website and am unsure how to get my dad the same treatment.  What was the name of your oncologist there?  Was this an experimental treatment? We are from Canada so I'm not even sure how to get him referred. I would so appreciate if you could steer me in the right direction.  Karianne Fri, 01 Feb 2008 00:00:00 GMT Dear Edith,Read your message and was happy to hear tis. How did your scan in December go?If you will, what was the name of your oncologist at Stanford?I hope for a graet reply.Art Zorba Fri, 15 Feb 2008 00:00:00 GMT Hello- The Doctors name at Stanford is Dr. Fisher.  He had indeed gotten incredible results using avastin.  Please let me know ASAP what your going through and how you have chosen to proceed.  My mother just began using the same treatment Edith had been on.  BB Zorba Fri, 29 Feb 2008 00:00:00 GMT Hello-how are you doing now? Hope all is well.BB Zorba Fri, 29 Feb 2008 00:00:00 GMT Linda- How are you doing?  would love to know your issues with Gallbladder Cancer and how you are doing.  My mom is going through the same thing.BB Zorba Fri, 29 Feb 2008 00:00:00 GMT LW- How are you doing now.  When you were first diagnosed what stage were you in?  My mom has GBC and is trying anything and everything.BB Zorba Fri, 29 Feb 2008 00:00:00 GMT Thanks so much for replying to this message.  Basically, no treatment is being done for my dad.  He just had a CT scan, and shockingly, the cancer has not spread although the tumor markers have skyrocketed.  His oncologist told him this week, that because his chemo would just be palliative, there's no point in doing it while the cancer isn't spreading and he's feeling well.  How is the avastin working in your situation?  Does the doctor feel like there's a chance?  All doctors over here are just doomsayers. . . it's really discouraging.  Thank you so much for your interest. Karianne Fri, 29 Feb 2008 00:00:00 GMT  On 11/11/2007 Edith in California wrote:Dear Michelle, I just found your message. Maybe the treatment I have received will be of interest to you. March 16, 2007 I was diagnosed with stage iv gallbladder cancer (cancer in lungs, liver, bowel, colon, lymph nodes, gallbladder and a large 7 inch tumor mass in my peritoneum). Doctors in San Diego gave me about three months to live. Don't ever let statistics overwhelm you. For two weeks my husband and I researched around the clock; flew overnight to Sloan Kettering in NYC to confirm it was inoperative; had MD Anderson in Houston look over my Pet Scan and confirm their systemic chemo regiment for nonresectable gallbladder cancer; and finally found the doctor at the Stanford Cancer Center who has saved my life. His chemotherapy treatment (oxaliplatin/avastin/xeloda) killed over 70% of the cancer after 4 cycles (each 3 weeks long). With such stunning results from chemo, Stanford agreed to do radical surgery on July 11, 2007 to remove the gallbladder, 4 liver segments, lymph nodes (cancer in the colon and bowel seen on the most recent cat scan was dead by the time they opened me up.) A new cat scan on August 10, 2007 showed no visible cancer. I'm almost finished with another 4 cycles of oxliplatin/avastin/xeloda to wipe out any undetectable cancer cells. My CA 19 blood marker was down to 1.2 on November 1, 2007 (normal is anything less than 35). Another cat scan on December 10, 2007 will show us what's happening. I don't presume to think I'm cured, but I feel so blessed by God's Grace, and humbled by this experience, and so much in awe of my medical team at Stanford Cancer Center I wanted to let you know. Perhaps it will inspire you to fight and to know that there is potential hope out there for this deadly cancer. God bless you. Edith in CaliforniaDear Edith , your message from 11/11/ 07 sounds very encouraging. My 44 year old sister was diagnosed christmas eve with gall bladder cancer. She had her GB removed at Sloan and had 3 rounds of cysplatin and gemcitobine. It had originally spread to her lymph nodes but no other organs. Her most recent ct shows "mild improvement"according to the radiological report , however her oncologist has used the term stable. No new cancers were seen and nodes had reduced in size.  I would be eager to hear an update on your condition and would be very grateful for your insights in uncharted eaters of sucessful GB treatment. Also If you could include the doses you received of the drugs you were on. Thanks very much , I hope is well ,Nancy in NY. nynancy Thu, 05 Jun 2008 00:00:00 GMT Hello everyone,          My father has been diagnosed with Gallbladder cancer in June. The doctor told him that he is currently at stage two. He also gave him two options, to get surgery or to not get surgery. Before these options, he has already taken out his gallbladder, but the cancer has already spread to the bile ducts. If he does not get the surgery he would only live two more years, and if he does get the surgery (taking out a portion of the liver and replacing the bile ducts) he would live to five years. My father is extremely confused on what he should do. If he was to do the surgery many side effects might come from it. I am afraid that because he will be in so much pain from the surgery his immunity will go down,  making it possible for the cancer to spread even more. What surprises me is that the doctor said that chemotherapy and radiation will not treat this cancer, but yet I can see that many patients are able to receive these treatments. What are your opinions on my father's conditions? Thank you very much and I hope the best for everyone. BetN24 Wed, 23 Jul 2008 00:00:00 GMT Edith,I am desperately looking to see some chance of hope for my mother.  She has gone through many treatments and I would like to know how you are doing so far? Are you cancer free? Any comlications? I would like to talk with my mom's doctor about some of the treatments you have received.Thanks. minnie77 Fri, 05 Sep 2008 00:00:00 GMT