Hello Percy. Thank you for your usual prompt response. And my apologies for my delayed reply. It has been of a busy bunch of days.
Rather than continue to hijack Sandie's thread, I thought to jump onto this one, keeping the continuity of the conversation.
PCL1029 20 July 2013
“If I may, Sandie, I had my 3rd recurrence in June,2013. It was about 20 months after my 2nd resection on Oct. 2011. Therefore we are a kind of similar in the tumor growth rate for intrahepatic cholangiocarcinoma(CCA).
Since I do not know about the medical systems in France, but if you can have a biopsy of the tumor to do a " next-generation sequencing genomic profile ", it may be of value in current and future treatment. The idea was suggested to me in my 2nd consultation from MD Anderson for oncology consult .
This CCA really a disease of its own; most other cancers, after the removal of the tumor will enjoy a much longer disease free period,even primary liver cancer .
I know how it feels when CCA come back to say hi to me. But I know and prepare it will be back anyway because of the odds are high for intrahepatic CCA.”
rvb 21 July 2013
“Percy, did I read correctly that you had a "next-generation sequencing genomic profile", did it make a difference in treatment approach? Has anyone else had it done, and what was the outcome?
PCL1029 21 July 2013
“The following is the exact quoted from the consult from MD Anderson:
...To make some suggestions, if not done I would recommend genetic sequencing for additional genes .....
I also got another oncology consult from university of Chicago, the direct quote
is as follows:
---I would also send the tumor tissue away for full sequencing if it has not already been done, just to see if there are any hints as to how to best treat your tumor....
What i think is that they try to leave no stones unturned for future treatments since targeted agents are famous for developing resistance early.
I am EGFR positive, so they recommend Tarceva for me if all the tumor were removed completely by RFA and PEI.
BTW, if TIL from NIH is not for you, you may consider clinical trial of PD-1 and the like (PDL-1).(immunotherapy agents).”
rvb: If I am understanding correctly, the testing offered a more directed approach to your treatment? So it was successful as it appears to me, and good news for you. I will bring this information to my Nurse Practitioner on Monday's appointment for her response. As mentioned previously, I am not looking forward to FOLFIRI. All options are on the table.
I did some quick research on the PD-1 and there appears to be a trial by Merck in Philadelphia. Side effects will have to be evaluated, of course. I am feeling pretty good for the state of the disease, and I would preferred not to feel too much worse.
Again, I will pose the question: has anyone else had the testing? If so, what was the outcome...was it worth doing?
Again, thank you Percy for your help and information. Have a pleasant week, Renee