Intro
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I was diagnosed with metastatic bile duct cancer in Sept. 2003. I was not a candidate for surgery. I had 9 months of Gemzar/ cisplatin, then after a break of a few weeks started on Zelota (5FU). I was able to stay on that for 9 months before growth in my liver tumors and lungs started. I also had a metastasis to my hip.
My latest drug was Taxotere. It has worked well for almost a year but my doctors feel it has run it course. I was told a fourth round of Chemo usually isn’t helpful. I am looking for a trial (as are my doctors) that may be helpful to me as stopping treatment isn’t an option in my mind. My liver function is still normal and has been all along. I live in central MA near CT and only 1 1/2 hr from Boston. I have received great treatment at home and at Mass General. has anyone had any similar experiences and does anyone have any suggestions?Leigh,
Your brother has a lot of good options in Arizona. The Mayo Clinic, which we looked into and spoke with Dr’s has treated cholangio many times (Dr. Leonard Gunderson – radiation oncologist – came highly recommended to us, but radiation wasn’t our route at this time). Dr. Daniel Von Hoff is down there as well, he is world renowned in his practice and also heads up the Molecular Profiling Institute which you can find on the general information page. In almost every situation, when we have been looking for alternative treatments or cutting edge treatments for cholangio, we have been able to find someone in Arizona doing them (no such luck in Utah)!
My suggestion, read everything on this site that you can and then ask all the questions that you need to. You have at least a dozen more people your brother’s age on this website (some younger) we are all working together and sharing information to beat this. Hang in there.
Hi Leigh! We are practicallly nieghbors as we live in Phoenix! My husbands experience with this happened while we were out of town and he had to have an immediate Whipple Surgery. On our return last November we continued care here under Dr James Cashman. What a wonderful DR. He is the Director of Liver Transplants at Banner Samaritin BUT he does Whipple Surgeries. Both he and the DR out of town who did the surgery said that chemo and radiation is not the way to fight this…a resection is required. I would definately get a second opinion and start your battle. Its not a pleasant one but with the right doctors you can come out a winner. Its been a long struggle but we see the light at the end of the tunnel. Since this is rare you want to make sure you have a DR who is not second guessing. Should you decide you would like to see Dr Cashman, he and Banner Samaritin are both on the web. Questions? Please feel free to e mail me. We will be thinking of you and your journey.
leigh,
i am sorry to hear about your brother, I would reccomend that you seek a second opinion on the surgical front as surgery is the only real chance of cure with this beast. my dad has had 2 ops – the first op we were told tumor could not be removed as wrapped around artery – second surgeon removed tumor “it peeled away easily from the artery” – the second surgeon is prof peter lodge based in the UK (his contact details are on this site) he operates aggressively on these tumors and takes on cases deemed hopeless elsewhere.
if surgery not an option then keep trying with the chemo, i have come across people on this site and on other sites who have been held ‘stable’ on chemo for many years..
drs will give you all these gloomy statistics, you must remember that everyone is individual and will fight in different ways – mark and valerie on this site are taking oxylplatin and doing ok – someone i know suffered pancreatic 4 yrs ago (given 3 months) had gemcitabine and oxylplatin plus radiation and is still alive and kicking 4 yrs later – with the right chemo you could shrink this thing and maybe then go for surgery if not now.
best of luck, jules
My 36 year old brother was diagnosed with cholangiocarcinoma in August of 2005. They thought he was a good candidate for resection; however, when they opened him up, they said they tumor was around an artery and could not be removed. A stent was put in his bile duct and, since the surgery, he was on a chemo regimen of gemcitabine and cisplatin followed by seven weeks of radiation. Things appeared to be going fairly well based on the initial follow-up PET scans and tumor markers with a few set backs. Last week his PET scan revealed tumor growth and they started chemo again, adding Avastin this time. He had a visit this past week with the doctor who did the stent placement and was told the tumor appears to be wrapping around the intestine. I would appreciate any suggestions/tips/advice for specialists, treatments, alternative treatments, etc. He lives in Flagstaff, Arizona and has been going to Tucson for treatment. Everyone’s stories on this site helps you to not feel so alone in this mess! Thanks!
Leighanna
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