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My Mom just diagnosed, too (st was posted 10/06/2009 07:08 pm by Kathleen
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Hi. My mom was diagnosed on 9/17 and had her 1st treatment with Gemcitibine and Cisplatin infusions on 9/23. Her CA19-9 is about 1600. She's being treated at Roswell Park in Buffalo, NY. She has had mild fatigue, but no other side effects after 2 treatments. She is on a 2 week on/1 week off schedule. After 3 cycles (9 wks), we get another CT scan. This is a horrific disease, but we are determined to fight. The cancer has spread to many lymph nodes and may or may not be in the liver, though there is an enlarged lymph node under the liver. The frustrating thing, aside from this coming out of left field without notice and with a vengeance, is that the doctors don't know if it is a true gallbladder cancer or a chloangiosarcoma (sp?). They say its Stage IV, but I'm not sure if that's because there are so many lymph nodes involved or because of possible liver involvement. They say surgery is not possible, nor is radiation. She is 73 and, until now, was the cutest, spunkiest golfer, dancer, gambler, power walking 'grammy' you've ever met. I wonder about radiofrequency ablation and the use of erlotinib or serafonib or GTX. Her oncologist rejected these therapies. He has been warm and comforting but is probably getting sick of my questions. At bottom, I wonder why won't they at least try something more aggressive given the dire prognosis. Is it insurance? Off-clinic use? Efficacy? If you or anyone else on this board can share your experience(s) with getting the most aggressive treatment for this most aggressive cancer, I'd be forever grateful. (By the way, my BIL has pancreatic cancer and the JH Message Board has been wonderful. My mom's treatment is pretty similar to his.) God bless and good luck! Kathleen

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