August 9, 2014 at 5:00 pm #84180lainyParticipant
Dear Cholangotango, thank you for your Dad’s update and you know we love the word stable! Your post is most informative and we also thank you for that as well. You are a good and strong advocate and your post hopefully will be helpful here for others. Wishing the best for your Dad and looking forward to the next post.August 9, 2014 at 4:50 pm #10414cholangotangoParticipant
Background: Dad was diagnosed in December-13. Went to UCLA for treatment (Dad is a doctor himself, and worked in the surgical pathology department at UCLA for 30 years). His treating Onc was Dr. Randolph Hecht, which prescribed Gem/Cis for 1st line treatment, with poor results after the 1st scan, so he prescribed a different chemo for 2nd line treatment. Due to reasons I’ll leave off line, I strongly recommended my parents switch Oncs and treatment facilities, which as a former 30 employee there was not easy to do, but he finally agreed. As mentioned, I’ll not go into detail why I would not recommend Dr Hecht for CC patients. But if you need to know my reasons, please get in touch with me through the moderator and I’ll send you a private email.
While looking for a 2nd treatment option, we visited Dr. Dayyani at Banner MD Anderson and Dr. Ramanathan at the Virginia Piper Cancer center in AZ. Both men seemed like very good human beings and recommended we not continue chemo but consider trials. Because Dr. Ramanathan was about to become the primary investigator for a PD-1 trial MK3475 (PD-1 is an immunotherapy which has worked wonders in other types of cancers) we were at first very excited. About a week after dad became jaundiced and had to be admitted for a metal biliary stent at UCLA, which brought his bilirubin down from 25 to 2 in a matter of 4 weeks. Around this time we learned (I can’t say where we got the info) which was right after ASCO (or one of the major cancer meetings) that, at least in the few patients that had been treated for PD-1, early response rates were in the low 20%, a stark contrast with what I expected based on results from other cancer types. I should mention that none of that is conclusive and should be taken with a grain of salt due to the sample size. We then decided against doing the PD-1 and went to see Dr. El-Khoueiry at USC.
Current Treatment: Dr. El-Khoueiry suggested dad go on a Phase 1 MEK Inhibitor trial he was heading – NCT02042443. A little about this trial: It’s a Phase 1 biologic (not chemo) and its goal is to starve the tumor by keeping it from from feeding itself by inhibiting its ability to grow a blood supply (a process commonly referred to as angiogenesis). Dad started treatment in June and his first scan in late July showed no tumor growth (stable), so he’s continuing with the treatment and will have his next scan around the 1st of Sept.
Just wanted to report our experience with you, in case anyone can benefit. I am keeping (as most CC patients and advocates should) a close eye on the TIL based treatment NCT01174121 and emerging treatments that seem incredible but not in trials yet, in particular CD-47 based treatment, and the commercialization of work pioneered by John Kanzius at AkesoGenX Corp.
Best to all.
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