rain

Am so pleased for you

The bet of luck and prayers on this day!

Jason,

I am not a specialist however wished to pass on what I have learnt in the short time since my father was diagnosed. I have found helpful to read other people’s approach.

He just started a clinical trial with GEM/CIS and panitumumab.

This is what I did after reading and getting advice from the wonderful people on this site.

I) confirmed with Dr Kato that he was not operable ( to be honest with lymph node metastasis I was rather sure he wasn’t but you don’t wish to leave any stone unturned)

Ii) spoke to a lot of Oncologists and then decided from the gut feeling approach that many discuss above to try the trial with the so called Standard of care GEM/CIS with a targeted therapy. Now please note there is no evidence that such drugs EGRF inhibitors do make any difference however I thought it was worth the try. My father has had a very severe rash from this drug which may not be pleasing to everyone however if it increases our response we wished to try. We have our first scan at the end of May and are hoping for the best result possible.

Iii) despite the fact it is not done in Australia I organized via our Oncologist to get genetic testing done on his sample (caris foundation) so that we have more information. It is not cheap however believe some of the US insurance companies cover this

Iii) I know this may seem crazy but I juice a bitter melon for my dad everyday. Read about this fruit/vegetable in this site.

I note that Tiffany is treated at MD Anderson by Dr Javle and he placed her on another EGFR inhibitor. I would ask your oncologist about this option (there are amazing reports on this website about dr javle and he kindly responded to my email from Australia which I thought was very nice).

In the end believe then idea that you need to look at this like a chronic disease does make you feel better and I truly believe a positive attitude is important.

I wish you all the best for you and your family

This is great news Chris. I am so happy for you and your family. Best of luck with the recovery however am sure your father will do well!

Hi Kris,

I found this about your study drug … Sounds exciting

http://www.wjgnet.com/1007-9327/full/v18/i21/2591.htm

Abstract # 2339: Prevalence of MET expression, activating mutations of KRAS and IDH1/2, and ROS1 fusions in cholangiocarcinoma patient tumor samples Exploring the c-MET pathway from a different direction is LY2801653, a small molecule, reversible oral ATP-competitive c-MET inhibitor. In addition to targeting MET, LY2801653 has been shown to inhibit the activity of ROS1 fusion proteins and MNK1 and MNK2, two signaling proteins downstream of KRAS. The study evaluated LY2801653 as a potential treatment of cholangiocarcinoma, a rare cancer that originates in the biliary tract epithelium and has a typically poor prognosis.

The study examined the prevalence of MET overexpression, activating single point mutations of KRAS and IDH1/2, and ROS1 gene fusions in intrahepatic and extrahepatic cholangiocarcinoma tumor tissues obtained from non-Asian (n=40) and Asian (n=60) patients. The majority of cholangiocarcinoma tumors expressed MET with approximately 50 percent of cases having strong staining (IHC score of 2+ or 3+). Overall, 25 percent of analyzed samples were positive for KRAS mutation, and mutations were more frequent in Asian patients. At approximately 60 percent of samples, G12D was the predominant mutation. For IDH1, the frequency of mutation was less than 10 percent overall, with R132C as the predominant mutation. IDH mutations were more frequent in non-Asian patients. There is no apparent correlation of MET expression with either KRAS or IDH1 mutations. IDH2 and ROS1 analyses are ongoing. The data suggest that inhibitors of receptor tyrosine kinases and their signaling pathways–such as LY2801653–may merit clinical evaluation in patients with cholangiocarcinoma.

thanks so much Gavin – very intyeresting!

Dear cjbenner,

I do hope it is some other diagnosis. Remmeber high bilirubin is not always CC.

did you have other symptoms & signs? Did they do a CT scan, a cholangiogram at the time of the ERCP?, a MRCP?

What was their final diagnosis?

If you are not convinved I would always suggest getting a second opinion, especially because this cancer is not alway so easy to diagnose.

Rain