CancerCompass message board discussion started by Zupka on 9/24/2007 http://www.cancercompass.com/message-board/message/all,16441,0.htm Mon, 13 Oct 2008 00:00:00 GMT Mon, 13 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I have had for years acute pancreatitis attacks. After a MRI scan last December which showed that the duct on the pancreas was deformed I returned to hospital. This year, in January, after an ERCP the hospital in Munich found that the tissue sample taken was malignant. They then did a CT scan which showed nothing so the professor said that I was one of the lucky 5% as my tumour was smaller than 1cm. When they operated a few days later the tumour turns out to be 3.5cms large and although from the bile duct, was in the head of the pancreas, with 16 of the 34 lymph nodes taken out showing positive. No CT scan has ever shown a tumour or problem of any kind. I gather that if the tumour has the same consistency as the organ or flesh around it, it just will not be seen! I had the Whipple op. at the end of January followed almost immediately with adjuvant therapy and radiotherapy for five weeks. This did include a once a weekly dose of Gemcitabine. I have continued with Gemcitabine and in June, at my request, I was given a PET/CT which showed 3 hot spots. Two could be easily explained, one was called a suspicious lesion. Because of this one, the professor allowed me to start taking Tarceva which I commenced on the 20th. June. This means that I must stay on Gemcitabine till my course of Tarceva finishes in December. It is difficult to find out, both from Roche or any other method as to whether I am the only person in the world with my carcinoma on Tarceva. I do feel better for taking it but would like to hear from any other people who have this quite rare cancer as to their treatment. I have been totally unable to get a prognosis from any oncologist. Michael Wilson/Switzerland w Zupka Mon, 24 Sep 2007 00:00:00 GMT  On 9/24/2007 Zupka wrote:I have had for years acute pancreatitis attacks. After a MRI scan last December which showed that the duct on the pancreas was deformed I returned to hospital. This year, in January, after an ERCP the hospital in Munich found that the tissue sample taken was malignant. They then did a CT scan which showed nothing so the professor said that I was one of the lucky 5% as my tumour was smaller than 1cm. When they operated a few days later the tumour turns out to be 3.5cms large and although from the bile duct, was in the head of the pancreas, with 16 of the 34 lymph nodes taken out showing positive. No CT scan has ever shown a tumour or problem of any kind. I gather that if the tumour has the same consistency as the organ or flesh around it, it just will not be seen! I had the Whipple op. at the end of January followed almost immediately with adjuvant therapy and radiotherapy for five weeks. This did include a once a weekly dose of Gemcitabine. I have continued with Gemcitabine and in June, at my request, I was given a PET/CT which showed 3 hot spots. Two could be easily explained, one was called a suspicious lesion. Because of this one, the professor allowed me to start taking Tarceva which I commenced on the 20th. June. This means that I must stay on Gemcitabine till my course of Tarceva finishes in December. It is difficult to find out, both from Roche or any other method as to whether I am the only person in the world with my carcinoma on Tarceva. I do feel better for taking it but would like to hear from any other people who have this quite rare cancer as to their treatment. I have been totally unable to get a prognosis from any oncologist. Michael Wilson/Switzerland wI wish to add that this cancer is said to be so rare that the hospitals just treat it as pancreatic cancer. I therefore requested John Hopkins in Baltimore to make their vaccine available to me. They refused!Michael Wilson. Zupka Mon, 24 Sep 2007 00:00:00 GMT  On 9/24/2007 Zupka wrote:I have had for years acute pancreatitis attacks. After a MRI scan last December which showed that the duct on the pancreas was deformed I returned to hospital. This year, in January, after an ERCP the hospital in Munich found that the tissue sample taken was malignant. They then did a CT scan which showed nothing so the professor said that I was one of the lucky 5% as my tumour was smaller than 1cm. When they operated a few days later the tumour turns out to be 3.5cms large and although from the bile duct, was in the head of the pancreas, with 16 of the 34 lymph nodes taken out showing positive. No CT scan has ever shown a tumour or problem of any kind. I gather that if the tumour has the same consistency as the organ or flesh around it, it just will not be seen! I had the Whipple op. at the end of January followed almost immediately with adjuvant therapy and radiotherapy for five weeks. This did include a once a weekly dose of Gemcitabine. I have continued with Gemcitabine and in June, at my request, I was given a PET/CT which showed 3 hot spots. Two could be easily explained, one was called a suspicious lesion. Because of this one, the professor allowed me to start taking Tarceva which I commenced on the 20th. June. This means that I must stay on Gemcitabine till my course of Tarceva finishes in December. It is difficult to find out, both from Roche or any other method as to whether I am the only person in the world with my carcinoma on Tarceva. I do feel better for taking it but would like to hear from any other people who have this quite rare cancer as to their treatment. I have been totally unable to get a prognosis from any oncologist. Michael Wilson/Switzerland w  Zupka Thu, 17 Apr 2008 00:00:00 GMT