Time for Plan B
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Duke,
You are always very helpful and responsive on this forum. I hope that you may have some questions answers. stay positive, stay strong.
serena
Duke,
I am one of the newer “lurkers” and rarely post comments. But I saw your post today and felt compelled to respond. I have learned a great deal from many on this forum, including you. I so appreciate your wry writing style and thoughtful perspective on topics. I admire your spirit and determination and often send positive, healing thoughts your way. We all know firsthand what a bumpy ride CC takes us on and it sounds like now you are on the down side of that ride. Hang tough and I pray that soon you come across the trial/treatment that will work to position you on the upswing. All my best,Debbie
Oh Duke….I wish that I had some advice for you. Chemo was never a good option for me so it is hard to weigh in on this matter. I did have growth with gem alone. I am hoping that you can get some answers for the trametinib trial. I just wanted you to know I am thinking and praying for you to get the answers for your next plan of attack! Stay strong and keep up your awesome attitude! You bring so many smiles to this board!
MelindaI haven’t had a complete round of chemo since mid-September. The Day 1 combo of carbo/gem clobbers my platelets (<60) for two weeks so I don't get to the gem only. And the tumors were increasing in size and number and had met to my spine, so gem only is not the answer. Looks like I either find something completely new or maybe just do carbo/gem and wait for a few weeks then repeat. Has anyone done that?
There is a trametinib (NCT02042443) trial going on that might help. Trying to get info on that but phone call not returned. It was suggested in the FoundationOne report. Cholangotango – your Dad is participating in this. Can you give me details? It says you take pills daily for 21 days then repeat. Does this mean you don’t get any time off? Do you have to take the pills at the treatment center or will they let you self-administer? Or let your local center administer? What kinds of testing do they do during the treatment? There are three Arms for this trial. How do you get into the trametinib Arm? Anything else would be appreciated.
Dr. Alberts from Mayo suggested nexavar (sorafenib) as a possible Plan B option. This is the most hopeful link I found (thanks Gavin): http://www.ncbi.nlm.nih.gov/pubmed/24294517
But it sounds like this is only a short term treatment – loses effectiveness quickly.
After all that the only thing I have to do is get my onc to go along with it. Her “script” says FOLFOX is the next treatment.
CT scan next week.
Duke
I finally talked with someone at the James. The trial has not yet been approved to run yet. The good news is that I could self-administer the pills and would only have to go down there every two or three weeks for testing. The bad news is that there are three Arms, randomly assigned, of which only one uses tramenitib. The others use capecitabine (Xeloda) or 5-Flourouracil (IV), neither of which were flagged by FoundationOne. Searches here suggest that Xeloda is more useful with extrahepatic CC than ICC. I only found one mention of 5-Flourouracil and that was two years ago.
Why was I expecting this would be simple?
Duke
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