November 15, 2016 at 5:20 pm #24434marionsModerator
Joe….I looked at the trial and noticed: A Genotype-Guided Dosing Study of FOLFIRABRAX in “Previously Untreated Patients With Advanced Gastrointestinal Malignancies”. In this case, prior treatment with Gem/Cis will eliminate the possibility of enrolling in this trial.
On another note: you may want to reach out for a second opinion with Dr. Catenacci, also at the University of Chicago. He is on our medical advisory board and is very familiar with this cancer.
MarionNovember 15, 2016 at 3:53 am #24435prayformymamaMember
Thank you all above, your responses mean the world to me and my mother!! We actually just got home from a visit at the University of Chicago for our second opinion with Dr Sharma and they suggested a clinical trial as an option that is only 4 months old. The trial is called FOLFIRABRAX. Problem is it hasn’t been a trial long enough to hear of much if anything for results. Long story short the Doctor suggested to stick with the originally suggested chemo of Gem + Cis. The doctor also mentioned that with treatment of this chemo her average extension of life would be about a year……which was difficult to hear given the chemo itself can take all of 2-3 months. I wish today had gone a bit different, any other suggestions as our time is running out for exploring options before our fright turns to flight as Lainy put. Anything and everything is appreciated as we near a decision to push forward. Thanks and god bless to all of you who have taken the time to respond. Just the feeling of not being alone in this is truly a gift in itself. Thank you
Debbie’s Son JoeNovember 14, 2016 at 8:53 pm #24438marionsModerator
prayformom….I like to follow and welcome to our board. Joe, where has your mother been diagnosed and have you obtained a second, professional opinion from a center treating a high volume of cholangiocarcinoma patients? Has the diagnosis been confirmed via a biopsy, has molecular testing been conducted?
MarionNovember 14, 2016 at 8:53 pm #24437lainyParticipant
Dear Joe, so sorry to read about your Mother but you have come to the right place for CC support. May I ask where your Mother is being treated? I am not surprised that they want to start with Chemo to bring down the tumors and to stop the spread. We have had patients on here with like diagnosis and they have been started on chemo first as well and had good luck. You never know how strong you are until “strong” is the only choice you have! Once a treatment is started, I promise that the fright turns to fight. Read up as much as you can on CC as knowledge is our best tool for fighting this cancer. Be strong for your Mother and hang in and hang on. Prayers going out to you and your Mother and please keep us posted on her progress. Below is a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/November 14, 2016 at 7:34 pm #24436redParticipant
So very sorry to hear the news about your Mother, Debbie. My gosh, this darn disease just shocks the heck out of you, doesn’t it? When it “hit” my husband last July, it was the surprise of a lifetime. Amazing how you go along living your life and all of a sudden the earth is knocked out from under you. My thoughts are with both you and your Mother. I hope that you find a lot of helpful and comforting information on this website. They are many of us here, both patients and caregivers, who support each other and provide a band of love that is full of understanding and strength.
Prayers coming your way
RedNovember 14, 2016 at 4:13 pm #1754prayformymamaMember
My mother Debbie (61 Years Young) was just diagnosed with Stage 4 Cholangiocarcinoma. The tumors are on both the left and right lobe of the liver and they believe they see what looks like metastatic tissue in her abdomen lymph-nodes and skull. Any and all advice and resources would be greatly appreciated as we’re frantically trying to find solutions as the only ones we’ve been given so far are to start chemo ASAP. Thanks in advance for all your help and support!
Her Son Joe
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