Targeted therapy for extrahepatic (Klatskin Tumor) cc
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- This topic has 6 replies, 4 voices, and was last updated 7 years, 10 months ago by dkillion10.
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December 13, 2016 at 4:29 pm #42755positivitySpectator
Hello,
When were you diagnosed with Klatskin tumor? Was it difficult to diagnose and what stage was it when they found it? Can you please let me know how many ERCP procedures you had to replace stents?Thanks so much and the best with your treatment.
November 8, 2016 at 12:53 am #42758dkillion10MemberOn Oct 28th I had surgery to remove the two tumors and unfortunately they discovered several others (still amazed that none of these showed up on any MRI, PET or CT scans). They closed me up after determining further resection was not possible. I am now scheduled to start up on standard chemo (Gems/Cis) in hopes that this will beat back further progression. In the meantime, samples of the tumors are being sent to FiundationOne for genetic testing. The test results will determine our next steps. Keep pushing forward.
November 8, 2016 at 12:40 am #42757dkillion10MemberNativeGF, I hope that you make it into MSKCC. I visited there a couple weeks ago and was impressed with their facilities. Met with Dr Epstein (Oncology) who was very informative and helpful in understanding our alternatives. Best wishes to you in your journey. – Dennis
October 30, 2016 at 9:58 am #42756nativegfSpectatorIt’s nice to hear news of targeted therapies that are working for cholangiocarcinoma patients. I’m hoping to be eligible for a similar treatment. My first chemo combo of oxaliplatin and gemcitabine didn’t go well as my liver counts went up. The next combo that included an at-home 46 hour pump of 5-FU put me in heart failure. I was fortunate to be in the ICU when I went into ventricular tachycardia. Four nurses revived me before they had to use the paddles. I’m recovering well from that episode but I have to wear a portable defibrillator vest until my heart function improves. Apparently, this cardiac side effect of 5-FU is pretty rare. If I’m able to get rid of the vest in the next 3 weeks, I’ll be headed to Sloan-Kettering in NYC to look for any treatment that I can tolerate and will help fight my Klatskin tumor. In the meantime, I’m scheduled this week for a second replacement of my stents.
I wish everyone all the best in their individual struggle against this awful disease.October 15, 2016 at 1:56 am #42753dkillion10MemberThanks Debbie! I am blessed to have a wonderful support team. Most of the targeted therapy experiences I found were those with intrahepatic cc. Was hoping that there might be some fellow extrahepatic (Klatskins tumor) out there that would be willing to share.
October 14, 2016 at 2:59 pm #42754debnorcalModeratorHi Dennis,
I am so sorry that you have a recurrence. I know how very disappointing that can be. We have several members that have utilized the targeted therapy Keytruda – with excellent results and I hope they chime in and share their experience with you. The good news is that doctors have tools now (like the Keytruda, targeted radiation, etc.) that allow them to treat recurrence as a chronic disease that is managed as issues arise.
Sending healing thoughts to you,
Debbie
October 14, 2016 at 12:50 pm #4147dkillion10MemberHello fellow CC warriors. My latest news has brought me back to reconnect with this fantastic site and search for answers. I have developed two metastatic tumors in my abdominal cavity. I have an appointment with my Oncologist Monday and looking to be as prepared as possible.
Question: Any extrahepatic (Klatskin tumor) members have any targeted therapy (pembrolizumab/Keytruda) experience to share?
My intro w/ background can be found here : http://www.cholangiocarcinoma.org/punbb … 567#p96567
Thanks You!
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