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Thanks, Marion! I do have some slight neuropathy, more in my feet than my hands, and I’ve read that the FOLFOX can have the same effect, probably primarily because of the Oxaliplatin. I did find what I think is a helpful site at:
Seems like an additional side effect with FOLFOX beyond what I’ve had with Gem/Cis is the extreme sensitivity to cold that many people appear to have experienced. Although I understand that everyone’s experience as far as side effects will be different.
The trial coordinator at Mayo had indicated to us in about June that the study had entered Phase 2. Since I came in under Phase 1, I guess I stay under that protocol until or unless I develop too many side effects or it clearly stops having any effect on me.
Thanks! My trial drug is just called Research CX-4945, by Senhwa. The Study number is S4-13-001.
I am just joining the discussion board. My name is Lynette. I am 57 years old. Almost exactly a year ago I went in for laparoscopic surgery to have my gallbladder removed for supposed gallstones. When I awoke from anesthesia the surgeon explained that he had not completed the procedure because when he had gone in he had recognized he was seeing a tumor on my liver, so he took a tissue sample and pictures and got out. I was referred to an oncology surgeon who ordered more tests, and a week later he informed me the tumor was too large for me to be a candidate for surgery, and I was referred to an oncologist. The diagnosis was of cholangiocarcinoma; it was subsequently classified as intrahepatic. The oncologist confirmed that my cancer was unresectable, and was stage III into stage IV. He indicated that if I had no treatment, I had about six months to live, and that if I entered treatment, I had 12 to 18 months.
In retrospect I had probably been having some symptoms for nearly two years prior to my diagnosis; I had been having sharp pains shooting from my shoulder blades up to my neck, for which my GP had diagnosed a strong anti-inflammatory pain pill, which had been generally effective. I now understand this pain was most certainly referred pain from the liver area. I had only gone back to my GP last year because I was starting to have more heartburn issues. An ultrasound was done which was interpreted as indicating that I had many gallstones, bringing me to the laparoscopic surgery.
Anyway, after the dire prognosis of the oncologist, I sought and received a referral to Mayo Clinic in Rochester, MN. The gastro-oncologist there confirmed the diagnosis and the stage, but indicated there was a trial available that might be beneficial. I started that trial in late September 2015. I have standard chemo of Gemcitabine and Cisplatin on Wednesdays, and Tu., We., and Th. I take an oral trial chemo medication, all on a two week on, one week off schedule. My tumor has shrunk from a starting point of about 11 cm to about 2 cm.
Since June this year the tumor shrinkage has stopped but is stable. I should mention that there is one and maybe two peripheral tumors elsewhere on the liver, which are extremely small. The Mayo oncologist is positive yet, as there has been no growth. I confess that my expectations of a miracle may have been too large, so I am frustrated that the tumor is not simply disappearing. It appears that my best option is simply to continue the same chemo regimen, including the trial drug, as long as I am able. I am starting to have some neuropathy in my fingertips, however. My Mayo doc indicates that if the neuropathy becomes too significant, I could continue the regime minus the cisplatin.
Given the anniversary of my diagnosis, I have been doing more self-reflection and reexamination, including re-reviewing internet research. Nothing I read gives me much more positive perspective than my initial oncologist’s prognosis. Even my Mayo doc does not contradict that prognosis, even though a year’s gone by and my tumor has shrunk so much. As I look forward to the unknown, I’m doing something I’ve never done before by joining an internet discussion board. Not surprisingly I know no one else with this cancer, and don’t believe those with other cancers can really relate to what we are dealing with. So I am looking forward to sharing experiences with others who are in the same or more similar position to myself.