My wife and I were not told about this treatment at Memorial Sloane Kettering Cancer Center shortly after she was diagnosed. She was 57 and in perfect health. I asked about "liver transplant" since she had a Klatskin tumor which was un-resectable. The doctors said that when they did a liver transplant, a technique that had been used for 50 years, the cholangiocarcinoma came back 90% of the time and so it would be illegal to do it now. I asked if there were any other clinical trials or new treatments that offered hope and the doctors said "no". It was 2006, 4 years after the Mayo Clinic published the peer reviewed journal article recounting patients that appeared to have been cured with the new protocol. It isn't just a liver transplant. That generally (90% of the time) does not stop cholangiocarcinoma. The protocol requires two courses of specialized chemotherapy and intensive external beam radiation to "cleanse" the patient of cancer cells in the blood and knock the tumor back prior to liver transplant. My wife was not metastatic when she was diagnosed because we caught it early through a blood test. Since she died I have received nearly 100 inquiries from patients who saw my post on this Forum and other cancer forums. None of them had been told by their doctors about this option. They only learned about it from reading my posts. For example a lady who was being treated at Yale University Medical Center immediately sent her files to Dr. Chapman in St. Louis and was put into the protocol. She received a liver transplant and is now alive and appears to be cured. She was given no hope at Yale. A patient at Dana Farber Cancer Center at Harvard called after reading my article and reported that she also was not told about the protocol. If your point is that doctors should not tell patients that there may be a cure for their cancer then I cannot agree with you. If you believe that doctors are telling their patients about the protocol then I can tell you that you are wrong about that from personal experience. Shouldn't we all be helping newly diagnosed patients find out what their options are? That is all I am asking. At Mayo and Barnes-Jewish Hospital they also treat some cases with resection if it is possible to do that but the tumors are often near the portal vein and resection is not safe. For anyone on the this forum who wants a copy of the study refer to I will provide it if they email me at firstname.lastname@example.org or call me on my cell phone which is in my original post. Another easy option is simply to call Dr. Chapman or the Mayo Clinic and ask about the treatment. I hope that you understand that all I want to do is get the word out to patients and since I have received 10 calls or emails this year from patients who were not told about it, I know that there is a problem.
Por favor publique sus preguntas en Español y un intérprete le va responder.