(9 replies, posted in Pain Management)

Hi Ryan and all fellow followers of this thread..I'm a 64 year old sufferer of CC, late stage and inoperable and getting ready to start 3rd cycle of chemo. I have had incredible, excruciating pains from gas from the very beginning. They are so debilitating that I can't do anything. The pains are of two types, one that starts w/in 1/2 hour- 45 min after eating and fills me w/gas. The solution I found is to chew 2-3 Beeno tablets prior to eating followed by Gas-X after eating. The second type of pain starts abt. 6hrs after eating, and leads to a uniform pain in the lower gut that can last a long as 14 hours. I have not found an effective antiflatuant to deal with this, My Dr, is considering having me start on pancreatic enzymes. As a result my apetite is nil and I lost about 50 lbs in last three months.  I continue to be in excruciating pain and if anyone has any suggestions, I would appreciate it.

Thanks for the quick greetings from Marion, Lainy, Gavin, and Eli.

As to Eli's question, All the info I have gotten on these studies comes from the work of Dr Ou at the Chao Cancer Center, UCI.

Two useful cites are:
"ROS1 Rearrangements in Lung Cancer: A New Genomic Subset of Lung Adenocarcinoma", Pasi A. Janne et. al., Jan 3, 2012/JCO.2011.39.4197 available on line at
http://jco.ascopubs.org/cgi/doi/10.1200 … 1.39.4197/
"Survey of Tyrosine Kinase Signaling Reveals ROS Kinase Fusions in Human Cholangiocarcinoma", Ting-Lei Gu et. al.  available on www.plosone.org January 2011 Volume 6 issue 1, e15640.

Hope these are useful and some subset of our community can be directly helped by these.


Hi all.
My name is Art and I have been diagnosed last month with late stage CC. Unfortunately the primary which blocked only partially the lower Biliary branch left no noticeable symptoms until a secondary grew big enough to cause a problem for my GI Doc in a routine colonoscopy. He got suspicious and called for a CT scan which lead to the diagnosis. Unfortunately the doctors claim that there may not be symptoms until late stages occur. More on this in another topic later.

A little about myself. I'm a 64 year old Physicist living in the LA area of southern California. I am fortunate to have a great wife and two wonderful sons a daugther in law and two grand chiildren. My sister and nieces and a bevy of friends provide a constant stream of concern and help.

I have been to City of Hope, UC Irvine Chao Cancer Center and I am being treated at a local Oncology group with connections to UCLA. I have just had my second chemo which is the only course of treatment open to me. The components are Gemcitabine (Gemzar) and Cisplatin.

In the mean time tissue samples have been sent to the UCI/Harvard/MassGen study to search for structural abnormalities in the tumor genetics. A chinese study originally estimated that 8.5% of the CC sufferers have the gene type abnormality of the study. Subsequent American studies now ongoing seem to show a lower occurance rate of ~2%. The good news is anyone with this gene marker may be   completely controllable with an oral administered drug. It takes 1 month for analysis of samples, 1 month to clear out toxins from chemo and then treatment can begin. The tissue type they are inspecting is an adenocarcinoma which is another selection element. The basis of the study is that this type of cancer is genetically identical to certain lung cancers that have been treated successfully with the drug of this study.

Since chances are slim for anyone to be an element of this group recognized therapies are started at once.

More on other topics where appropriate.
But again a hello to all.