Cholangiocarcinoma Positive Response

rklemay

I was diagnosed with cholangiocarcinoma in June 2011 and have been undergoing treatment for the past 10 months. In appreciation for others who have shared there stories, I wanted to share some of my information in hopes that it may help others. I initially had a liver resection last June and the pathology showed clear margins. However, my cancer returned had returned by December 2011 and had spread to my spine and sternum in addition to a spot on my liver.

Following my liver resection, my doctors at Lexington Clinic consulting with Cleveland Clinic recommended a course of chemotherapy consisting of 5 FU and leucovorin. As mentioned above, it did not prevent the cancer from returning. My doctor then consulted with Mayo Clinic and switched my regimen to gemzar and cisplatin which I continued from December until February 2012. Fortunately this regimen prevented any additional growth or spread of my cancer but did not shrink the lesions.

In response, my doctor consulted with Mayo Clinic and again switched my chemo regimen. I am currently still taking gemzar but now also receive oxalaplatin and avastin. I just had a follow up PET Scan this week and my tumors are all shrinking and show signs of cell death. I feel good and other than side effects from the chemo, I continue to work full time and lead a full life 10 months after diagnosis. I am continuing the same regimen and pray that the regression will continue and that good things are ahead. My insurance company has been very resistant to covering my current chemo regimen but my doctor was very persistent and was able to get it covered and it clearly is working so far. I share this information so that others may hopefully benefit and keep fighting against this terrible disease.

Rebel_Raised

Positive Response
I was dianogesed with cholangiocarcinoma a year ago April 7 2011. I had my liver resection done on April 28th also with clear margins. So far thank God and my great Cancer team from the University of Colorado I am still clear a year later. I started 4 rounds of Cisplatinin/ Gemzar in June after I was strong enough from surgery. I was then switched to Carboplatinin/ Gemzar for an addtional 2 cycles. I started 32 radiation treatments the day after I finished chemo. I was unable to work during my treatment. I went back to work in January part time. I have since started having sideffects from th treatments showing up. I was once stronger when I first went back to work and now I have servere neuropathy. They are a small price to pay to still be here. There is hope for people with our rare disease. I know I'm not in the clear yet but I believe I am on top and I plan on staying there. I'm 38 and I plan on seeing plenty of more birthdays to come. I don't know it my story helps but I hope it does. The doctors have to be aggressive with this cancer, hit it with everything out the gate and then step back. Hit it again if it shows it's ugly head