dani_ya

Thank you all for taking the time to reply. I’m sorry I didn’t reply earlier. It’s been a busy time. It’s been hard for my mother to make a decision. I think she is decided on doing more chemotherapy. She is also open to the idea of a clinical trial.

Krisv: Thank you for sharing your experience with Oxaliplatin. We were told about the cold intolerance. My understanding is that it’s not permanent. It only lasts for a couple of days after the treatment. Has that been your experience as well? As far as second opinion, we did have a second opinion from the beginning especially regarding the surgery. We were given the same opinions that surgery wouldn’t be helpful.

PCL1029: I would prefer if my mother receives targeted therapy instead of systematic chemotherapy. It would probably have fewer side effects, and the systematic chemotherapy is always available. The hard thing is to know which clinical trial to do, coping with the travel that’s needed, and knowing that the therapy may not work. My mother is doing well, thank God. I did look into the TIL @ NIH, but she is little older than the cut off age The GEM/CIS did appear to work. The scan towards the end of the chemotherapy showed shrinkage. The nodules appeared after the radiation. Could it be because the GEM/CIS was discontinued during radiation? Would GEM/CIS work again? What do you think? I heard that if GEM/CIS worked, the disease would have been stable for longer time. I really don’t know.

Lisa: Thank you for sharing your experience. I wish you all the best!

Kris: We weren’t offered genetic testing. Do you think we should do it? I do worry about the neuropathy side effect of Oxaliplatin, especially the intolerance to cold. My mother usually feels cold, especially her feet. Do the side effects resolve when treatment is stopped? I read about your experience with the inhibitor. I tried to call the trial investigators to get more information. I left them a message. Hopefully they can tell me their preliminary experience with the drug. Do you know of any other cholangiocarcinoma patients who had good response as you did?