Bummed

Charlotte….nice find. Physicians, researchers and foundations focused on Cholangiocarcinoma are closely connected and work together on numerous projects. In fact, Dr. Bardeseey leads the CCF Scientific Advisory Board: please see below:
http://cholangiocarcinoma.org/the-cholangiocarcinoma-foundation/advisory-boards/
and Dr. Saha received a 60 thousand Dollar Young Investigator Grant from our foundation (via the ASCO Conquer Cancer Foundation) for his work within the Bardeseey lab.
This is a global cancer and given the rarity of occurrence researchers must find common ground, not duplicate their efforts and but share data. All is very difficult to overcome as physicians and researchers are institutionally bound, government funding is difficult to obtain and proprietorship of data is difficult to define. The absolute fantastic news is that we are moving in the right direction and witness positive changes.
Hugs,
Marion

Dear Duke,
How are you doing at the moment?
Thank you for all your post on this discussion board, that’s very helpful for other patients.

My husband also has cholangiocarcinoma with IDH1 mutation. So that’s why I found this topic.
I read about a new study targeting the IDH1 mutation. I’m very excited about this study, so I would like to share it with you and with others who carry the IDH1 mutation:

The interesting thing about this trial, is that it is a Phase 2 study instead of Phase 1. The other interesting thing is that it is using an already FDA approved medicine, used for Leukemia patients.
Maybe this could be interesting for you?

https://clinicaltrials.gov/ct2/show/NCT02428855
https://giving.massgeneral.org/target-cancer-research/

Good luck for you Duke and stay strong!
Kind regards, Charlotte

Duke….Patty is not only in the trial but she has mentioned other CC patients who were already in the trial and others she has met there. But…it is for the FGFR mutation. Dang! Which mutation did your Foundation one data say you had?

Duke….Marion….

From Patty’s Blog…..I found enough info to passt his along. She mentioned BGJ398 and when I googled that, It said is was a Novartis trial ….for FGFR mutation….phase 2……and apparently dealing with Liver cancers. On the google response…..this was the trial designation:

CBGJ398XUSO4

Hope that helps. Patty has started this trial as have some other CC patients. Her blog details pretty well the protychol and what they are doing.

Duke…Marion…..I’m not sure what the trial is called that Patty is doing at MD Anderson. I do remember reading that her phosphate levels had to be under a certain number. I will check inbetween baking and thunderstorms today to see if I can find anything on Patty’s blog to identify the trial. I remember reading that she had to follow a pretty specific diet…low phosphate, which sounded restrictive, but manageable.

Julie