My history
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Jules, I too was advised that chemo and radiation have little effect on this cancer. I have read however of many experiences where patients are able to shrink tumors, sometimes to the point of enabling surgery that had not been possible earlier. Also patients have extended their lives with chemo, but sadly always at the cost of the effects of chemo.
I view it as a very personal decision with no right or wrong path.
-PeterCongratulations to you! WE love a success story. My husband, 73, had a Whipple August 2005. He is now doing wonderfully. Had hiccups for 5 months but after his T Tube and another tube were removed last Thursday the hiccups have stopped! We are on our way and now will just do surveillance with an oncologist. We were told that chemo and radiation just does not help this kind of cancer. It must be removed. It was and he had a resection. HE had a longer than usual recovery as he had 2 ecoli infections between 2 surgeries! But all turned out well and he may go back to work part time in another week.
We too feel very blessed and love hearing these kind of stories. There is hope!peter,
your story is inspiring, you did very well to be discharged from hospital after just one week! – my dad has had a similar op and has been told that he won’t need chemo, initially you think – can this be right? (as many people seem to have chemo post op) it is great to hear that you are doing so well.
Jules
My BDC, cholangiocarcinoma, took about 4 months to diagnosis once I knew there was a problem. I made the rounds thinking I had hepatitis or Lyme disease and got an eventual diagnosis of a Klatskins tumor, ERCP, stents, and finally surgery on August 29, 2003. Klatskins are rare and difficult, difficult to diagnosis and difficult to treat. Current Chemo and Radiation technology do not have much success against them. I was extremely fortunate to be put in contact with Dr Roger Jenkins at Lahey Clinic outside of Boston ((781) 744-2500). He, and his team, resected about half my liver, my common bile duct, gallbladder, a portion of my portal vein where the tumor had spread, and a few lymph nodes. Very major surgery taking over 10 hours. He connected a few small bile ducts directly to my intestine. The margins came back clean and I am now a little over 29 months from surgery and doing well. First few days after surgery are a blur, or perhaps I have blocked them out. I know they had me sit on the edge of the bed and stand on, I think, the second day in my room. By the third or fourth day I was slowly (very slowly) walking the hall and I worked hard at doing this a few times each day. My time and distance walking increased every day. I went home after 1 week. The 2 hour drive to our home in Vermont was rough but wonderful when we got there. I continued walking everyday, had home health nurses visiting to help with care (I still had external drains in) and of course follow-up visits at Lahey. I was back at work 1/2 time at about 6 weeks and full time a few weeks later.
I never had chemo or radiation.
I was 56 at the time of my surgery and in reasonable fitness. I try now to eat well, drink lots of water, Essiac tea and green tea. I work with a Chinese Medicine provider as well as my regular Docs, practice Qi Gong and yoga, walk, bike, and hope to XC ski if it would ever snow instead of rain here.
I now have occasional bouts of Cholangitis, an infection of the tiny bile tubes I have sewn into my intestine, which is common for the few of us with this disease.
Overall I am incredibly fortunate and able live an engaged and active life. I am well aware of the odds and count each day a blessing.(7/14/06 – adding lower case singular spelling of ‘klatskin’ so it will show up in the search engine. )
8/1/06 I have had a miraculous run of almost 3 years following my successful Klatskin
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