Anyone here like me?
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Katrina…..good luck on continuation with this trial. You may not be aware, but we have a thread focused on BGJ 398.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=13366Hugs,
MarionThank you. I survived all that with Xeloda and then surgery to remove it. It was in a very precarious position. And I was cancer free for 1.5 years. But, hello ICC again as of 5/15. This time, it showed up in the bile duct in the pancreas and a few lymph nodes near my shoulder.
This time, we got some really good gene testing (checks 350 types). I have 4 alterations, one of which has 2 targeted treatments that are fair and 1 that is showing promise in a Phase II Trial at MD Anderson: BGJ 398. One one week and the treatment shot up on phospherous sky high. So no treatment this week. Will lower dose and increase the phospherous blocker. It’s very slow growing but must admit that I do fear it may one day increase in its speed.
Katrina, I am in a period of uncertainty also, but for different reasons. I had a resection 4/2009, with clear margins, then six months of adjuvant Gemzar. I have had all clean scans (CT and PET/CT) for the past almost three years. Starting in August 2011 I’ve had somewhat elevated CA 19-9 and bili numbers. Prior to then, all blood work was completely normal.
One of the really crappy features of cc is the high probability of recurrence, which keeps all of us worried, even after a successful surgery. I’ve decided to not worry until one of the scans shows something to worry about, and have rationalized that CA 19-9 is affected by a bunch of things other than just cancer. I think you have to know you picked the very best doctors you can find, then put your faith in them, and just reconcile yourself that you will just live with cancer, but don’t let it control your life. My onc has put me on a more frequent followup and scan schedule (four months) and monthly blood tests (CEA, CA 19-9, chem 20, etc.).
Good luck with your followup care.
Katrina…no one wants to be in a holding pattern, but unfortunately with this disease it happens quite often. As Lainy has mentioned, nothing much will happen within the next few days and you will have much more to work with after your upcoming visit with the Mayo doctor.
Stay with us…we will try our best to help you through this rough spot.
All my best wishes,
MarionDearest Katrina, it sounds like you have now entered the ‘wait and see’ mode and yes there are others like you. I don’t think that anything major is going to happen in the next 2 weeks and you are with good Doctors so again, it’s wait and see. Don’t worry about hurting the duodenum as in some Whipples it is removed. Teddy never had a problem with that removal. Please try to take each day at a time and keep as busy as you can, don’t waste precious energy and the 2 weeks will pass quicker, I hope. I know, I know it’s easy for me to say but please try to stay strong! You never know how strong you are until “strong” is the only choice you have.
My oncologist doesn’t know of anyone like me so we’re walking an unknown path. If there is anyone in my situation, let’s compare notes, please!
I have interhepatic CC. I’m 63 and very healthy. The large liver tumor was successfully resected; no sign left. Did Gemzar/Cis just in case. No sign. Then, 8 months later, one lymph node near there doubled in size and was malignant. Tried Gemzar/Cis again. It remained stable with only a little shrinkage. PET doesn’t show activity but node is still enlarged and the “SUV” background was a bit brighter than they would have liked and could have concealed seeing activity. (So, what to do?)
Went to MD Anderson (Houston, TX) for an opinion. An endoscopic sonogram shows also something dark between lymph node touching/encroaching on pancreas, portal vein, and CBT. It didn’t light up in PET at all but its darkness on sonogram suggests something is there (scar tissue from operation, dead or almost dead cancer, infection — don’t know).
Almost all doctors suspect it isn’t dead in the lymph node periffery but they didn’t take another biopsey (as intended) to prove it. The MD Anderson surgeon can’t meet with me for two weeks to say what he’d do. The IMRT doctor won’t comment til the surgeon does. My home oncologist was considering 5FU to see if it keeps it stable. My home surgeon thinks surgery is a bit risky (and he is a risk taker!) and was hoping for radiation. But the radiation doctor had said before the endo that IMRT is the only radiation possibility and he would strengthen the dose which has a 25% chance of hurting the duodenum.
Anyone else out there like that now or in the past? I can’t be the only one who got rid of the liver tumor but am living in a world of don’t knows….. I rather fear surgery if it involves the pancrease (perhaps whipple procedure) which has an abundance of potential complications and doesn’t spell CURE according to posts I’ve seen.
Sorry, but I could almost throw up over being in this current world of “I don’t know for sure.” I’ve always been symptomless from the cancer to date but whenI read all tehse posts, I fear I’m just living on borrowed time for now.
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