Any bile duct specific cancer survivors out there?
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Hello Jeand, just read your post and the thread, good to see positive news and people still fighting . my wife Sue was diagnosed in 2005 , more than half of her liver removed along w/ other parts only to come back 7 months later in pelvic region. several surgeries, hospitals and too many protocols to list later she is still giving it hell almost 6 yrs later. she now has at least 13 measurable tumors in her torso and pelvic region and is to start Tarceva and be scanned in a week. She is as I write this in Palm beach w/ her girl friends. Only GOD knows what the future holds and had you told me 5 yrs ago she would stillbe here I would never believed you , She has been able to see our 14 yr old daughter mature into a beautiful young Lady . Sorry to ramble , from time to time I post on here just to remember how lucky I am . I read the forum every day and I see much pain and suffering along with GREAT strength. Good Luck GOD BLESS
Yes, this IS a great thread !!
I had my resection for left lobe intrahepatic CC done on Jan 19th as well, and I also am looking forward to my 1 year anniversary.
Best Wishes to all,
Snezzie
Congratulations to all. This is a great thread and am looking forward to more posts. I had resection and hepatectomy on Jan 19 – everything is clear looking forward to my 1 year anniversary and many more.
Hi Jeand,
I am approaching my 2 year anniversary (Jan. 5, 2011) of being cancer-free. My tumor was about 4cm and located inside the right lobe bile ducts. Still grappling with post-operative issues but otherwise feeling very good and very lucky.Betsy
Congratulations and welcome to our site. Your brother has given you the ultimate gift…that of a new life. What an inspiration you story is to all struggling with this disease. You had to overcome several set backs along the way and yet you have triumphed over this cancer. Please, continue to share with us. We love good news.
Best wishes,
MarionI am 8 year survivor of intrahepatic cholangiocarcinoma. I was diagnosed in July of 2002, and underwent radiation with adjuvant continuous infusion 5-FU, followed by living donor liver transplant from my brother in September 2002. I was on a newly developed protocol at Northwestern at the time, and I am so grateful that they took a chance on me, and patients like me. My post-operative course was complicated by stricture and multiple bouts of serious infection, but I am happy to say that I’ve been healthy for many years now after a successful bile duct revision surgery. I’ve lived to watch my children grow up (they were 4 & 6 at the time of my transplant) and to celebrate with my brother as he fathered a child of his own.
Roni….you wil find several postings re: sir-sphere although, lately we have not had any posters.
Best wishes,
MarionI’m a Klatskin tumor survivor. Diagnosed Dec.10 2006, my 54th birthday, and entered the Mayo Clinic’s liver transplant protocol in April of 2007. The protocol worked its magic with many episodes of dropping red blood cell counts , blocked j-tubes and bad jaundice, repeating cholangiograms, angiogram, teeth pulling, cracked vertabrae, 1/2 body weight loss, radiation, chemo, etc.etc. and finally the transplant itself on Helen and my 32nd wedding anniversary,March 20, 2008.
My eldest daughter Jennifer was my live donor donating 60% of her lver on the day of the transplant. She’s my savior and we all love her very much.
I’m in remission today over 2-1/2 years later. Looking forward to the 5 year remission mark as my gift of life. After that its all a gift.
Hi Jeand,
I was diagnosed in August 2010, mine was intrahepatic and resectable. I just started chemo and am feeling good so far. You will find lots of stories of survivors and support here. I feel lucky to have a great place like this to share my feelings and ask questions. Good luck.
ShariHi Jeand,
There’s actually quite a few of us who are CC survivors, some much longer than me (19 months since diagnosis, 12 months since first all clear CT scan). So it can happen! My story is here if you want more: http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=4553
Best wishes to you,
AndyHello Jeand-I am a bile duct cancer survivor!! I was diagnosed Aug 2008-only sympton was being itchy. My tumor was in bile duct fingers and was inoperable. My only hope was a transplant. My miracle was done at Barnes-Jewish in St. Louis MO. My hero is Dr. William Chapman. When I was diagnosed we discussed only once about it being terminal (6-8 months), after that he just focused on curing it and lots of hope. I did gemcitabin, 5FU, Xeloda and radiation. I had 8 ERCP in 9 months. Iwas transplanted May 24, 2009 making me cancer free!! I was transplanted again on July 5,2009 after my hepatic artery burst due to radiation damage. Dr. Chapman never gave up and always so loving and hopeful. My family and I believe I was saved twice to give hope to this terminal cancer. Don’t give up and pray like crazy! Cathy
Hello Jeand and welcome to our wonderful family. My hsband Teddy had a Whipple 5 years ago and when the CC returned he had Cyber Knife. Has anyone mentioned Cyber Knife? The tumor has to be under 7CM and it is a non invasive laser that in 3 -5 days zaps out the tumor. I would also suggest you read up on our posts and you will gain much information and strength from our fabulous crew. We have a search engine at the top of the page, just type in a word and information will come up for you. Again welcome and please keep us posted.
Jeand: Welcome to the site that most people do not want to join.
My husband Tom was diagnosed with CC in May 2008, had a successful left lobe resection, presented w/jaundice in Nov ’09, inoperable new tumor, was given a 6 month diagnosis in Dec. ’09 and here we are in Nov ’10 and he his still with us.You can read his story under my login name (My husband and Cholangiocarcinoma and My husband and Cholangiocarcinoma – part 2)
Just about a month and a half ago they saw new tumors in the remaining bile ductwork and a met to the pelvic area and started him on IV Chemo, Gemzar and Cisplatin.
They were unable to stent the bile duct where the inoperable tumor is, so he does have an external drain with a bag and has had that since Dec. ’09.
Weight loss is his biggest enemy right now, down to 110.9 pounds (from about 185).
I’m certain that there will be other posts following mine.
Good luck in your search, Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Diagnosed April 1, 2009 with extra hepatic bile duct cancer. Had a more permanent stent placed in bile duct to alleviate the obstruction. In May, 2009, 7 new tumors on liver disqualified me for whipple procedure. Started combo of Xeloda, Gemcitabine, Taxatere in June, 2009. It shrunk 6 tumors to cellular level and stayed stable until 4 weeks ago. The 7th tumor has grown and my Ca 19-9 has elevated. Started new treatment of Oxaliplatin & Xeloda 3 weeks ago. During this time I have felt pretty good most of the time – feel very lucky.
It’s hard to find other survivors with bile duct cancer since it is farely rare in US.
I’m hoping that I will qualify for other alternative procedures/treatments if this last tumor responds to the most current treatment. Of course, I am interested to find other successful medical histories for this cancer. I am treated at Johns Hopkins with the same protocol as pancreatic cancer since there is no separate protocol for bile duct. New medical discoveries are happening every day and I’m very hopeful.Good to join you.
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