Help!?
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Hello and welcome. I am sorry for what your family is going through. It is true, second and third opinions are never a bad idea, if you can do it. When I was researching treatment options for my Dad, I was told that ‘standard’ treatment options were specific to chemo, radiation or resection (or a combo thereof). Dad’s doc told him to go home and seek out experimental treatments/clinical trials, and Dad decided that he wanted to stay close to home and not travel, thus he opted for the gemzar treatments, which he tolerated quite well.
We’re thinking of you and your Mom.
-Tess
Welcome to the best little club in the world that no one wishes to join. We are from Milwaukee but have lived in Phoenix the last 14 years. When my husband was stricken we were visiting Milwaukee. There were very few doctors who could handle this (he had a Whipple surgery) and we totally lucked out. On this Board we believe in 2nd and 3rd opinions. I also believe in gut feelings on this and I would get a second opinion. I know there are some people on our site from the Chicago area and perhaps they can make some suggestions for you. Your mom does not want to seek more aggressive treatment probably because she is recovering from this 1st surgery and not thinking clear. If she listens to you at all she is going to have to trust you and let you be her advocate. I wish you could get her to Rochester Mayo Clinic in MN. They are one of the best. I know you will be getting some more help from our wonderful CC family. OMG, I just remembered something. My husband also suffered the pancreatic attack after an ERCP at St. Mary’s in Ozaukee. The dye had leaked onto his pancreas and almost destroyed it and he had to wait 3 weeks for surgery! Sorry, I just remembered. And we have a dear friend in Mequon who had the same thing happen at the same hospital! Please keep us posted and feel free to ask, vent or advise.
My mother was told she had CC on June 10, 2009. At that time she had been in the hospital for almost two weeks battling pancreatitis caused by an ERCP to explore a “blockage”.
June 15 she was told she did not have CC and released from the hospital. She was told when the pancreatitis was managable they would do surgery to diagnose and treat the “blockage”
July 29th she was operated on and this is what the surgeon wrote to an oncologist: “We explored a very pleasant previously healthy lady yesterday with a stricture of the bile duct bifurcation which turned out to be an adenocarcinoma on frozen section. Likely this is a Klatskin tumor that involved the proximal portion of the gallbladder at the level of the common hepatic duct. Regional lymph node metastases were present and resection would have required an extended right hepatectomy and bile duct excision leaving approximately 25% of her liver and would not have controlled the regional nodes. She is also not a candidate for liver transplant on the basis of extent of disease. We elected to close and discuss chemo and / or radiotherapy.”
We were told she could not start treatments for six weeks. I have been researching options of treatment and wondering if a ‘standard treatment’ or a clinical trial may be best for her. She seems content to start a standard treatment. An oncologist at Vince Lombardi Cancer Center (where her HMO mandated) seemed unaware that this is likely a Klatskin tumor and was not aware of any active clinical studies is suggesting Gemzar at a dose of 40 mg per square meter of body surface area, twice weekly concurrent with radiation for six weeks. Then a rest of 2-4 weeks followed by Xeloda orally for 14 days.
Any thoughts anyone has out there may be of great help. We only have two weeks to find her a trial near the Milwaukee WI area. There is one I have contacted at the University of Chicago she might be eligible for but she is not sure she wants to try that either.Sorry this is so lengthy. I am so happy this resource is available.
Thank You all
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