January 13, 2007 at 4:44 am #15060joniMember
Sara – As a fellow Cholangiocarcinoma Foundation Board Member, I am thrilled that you will be attending this symposium. We will all be anxiously waiting to find out what you learn. Thank you for attending! God Bless!
Joni CraigheadJanuary 12, 2007 at 5:48 pm #15059alisonParticipant
Its very exciting that you are able to attend this very important conference I just hope that all his research and new information will be of beneft to people in the UK and europe .
When My husband Jon was being treated by the Royal Marsden in London one of our top cancer centres , we asked about some drug combination therapies we has seen discussed on this site and were told that the only drug that could be given was gemcitabine and this was ruled by NICE guidelines , they did say they may be able to use 5FU as a last resort.
It would be so good to see all research into this disease being available to all who suffer.
AlisonJanuary 12, 2007 at 5:41 pm #15058betty-johnsonParticipant
Sara – how wonderful and unselfish of you to give your time to attend this symposium. There are several topics being discussed that I hope will have some light shed upon. One is RFA for treatment of CC. Although Sam was not treated at one of the larger hospitals like MD Anderson, Sloan Kettering or Mayo Clinic, he did have the ablation technique performed at UAB/Birmingham and he never developed any ascites, did not have to have any stents or really have any problems associated with the liver itself. He lived almost two years and I believe his cause of death resulted from the metastasis to the lungs. It is odd how this disease affects the body so differently – did the RFA help or not?
The other topic is “Do we really help our patients when we treat them for advancaed stage pancreatic cancer?” Sam went down so very fast after receiving a treatment of Camptosar (CPT 11) and I think that one treatment made his quality of life so very awful for the last few months that the lived. He absolutely never recovered from that treatment and caused him to decide to not receive any more chemo. Was it the chemo or the disease? I think it will be very intresting to watch the Coburn case since Joe has decided not to receive any chemo.
I know that not much research has been done toward a cure for cc but money is being expended toward treating pancreatic caner. When we find a cure for it,
we will definitely be close to a cure for cc.
Again my sincere thanks for your attending this seminar and I hope that you will find some answers for all of the ones fighting this unbelievable disease. Kelly sounded like a wonderful person and I know you lost a very good friend. Please let me know if I can help in any way.
Betty JohnsonJanuary 12, 2007 at 5:03 pm #15057jeffgMember
Have there been any human comparisons/studies done on why some people with hcc have fast progression of disease versus those individuals with slow progression? Like 12-18 months versus 6-7 years. I would certainly donate blood/tissuse for comparison if it would be scientifically beneficial.
JeffG.January 12, 2007 at 4:40 pm #329saraMember
Next week I will travel to Orlando, Florida to attend the Gastro-Intestinal Cancers Symposium. Due to a very generous invitation from the Colorectal Cancer Coalition, I am able to attend the Symposium as the patient advocate representative for the Cholangiocarcinoma Foundation. (Stacie announced the Cholangiocarcinoma Foundation here: http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=277) The GI Symposium sessions on Bile Duct Cancer are rolled in with the sessions on pancreatic cancer since these cancers behave similarly.
I will do my best to report the content of these sessions once I return. However, while I am at the Symposium, I think I will be in a good position to speak with many of the top cholangiocarcinoma specialists from around the world. Consequently, I hope that the community on here will review the topics listed below and provide any comments and/or questions you may like addressed.
The sessions I am attending are as follows:
General Session I: Prevention, Screening, and Diagnosis
-Screening for Familial Pancreatic Cancer: Clinical and Genetic Insights
-Evaluation of Bile Duct Strictures: How Do We Know if it is Cancer?
-Advances in the Imaging of Hepatobiliary Cancers
General Session II: Multidisciplinary Treatment
-Conformal Radiation Therapy for Primary Hepatobiliary Cancers
-Locally Advanced versus Metastatic Pancreatic Cancer: Do We Need to Treat These Groups of Patients Differently?
-Chemoembolisation and Ablation for HCC Techniques
-Bile Duct Cancer: How Aggressive Should We Be?
General Session III: Translational Research
-Epigenetic Inactivation of Tumor Supressor Genes in HCC
-Why is Pancreatic Cancer so Difficult to Treat? Stem Cell Resistance in Pancreatic Cancer
-GIST: The Use of Detailed Mutational Analysis to Guide Therapy
General Session IV: Controversies
-Do We Really Help our Patients when We Treat Them for Advanced Stage Pancreatic Cancer?
I am very excited to attend this conference and cannot wait to report back on the information shared by the speakers and attendees.
As an aside, we welcome any questions the community may have regarding the Cholangiocarcinoma Foundation. While it may not be immediately apparent, the members of the Cholangiocarcinoma Foundation are busy at work behind-the-scenes addressing the necessary start-up details. We hope to have the website up soon, and that the members of this community become involved as the Foundation continues to grow.
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