Thanks to a generous matching gift, every contribution you make this year will be doubled, until we reach $20,000.
Donate to the July 2019 Campaign for the Cure
-
It’s time for our annual Campaign for the Cure! During C4C, we focus on advancements and progress in the fight against cholangiocarcinoma.
-
Your support will help to initiate an important new awareness program designed to educate community physicians and patients about molecular testing and clinical trial treatment options.
-
We’re excited to share our new initiative to encourage molecular profiling for ALL cancer tumor.
-
Molecular profiling is a test your doctor can order to find out which mutations are present in the cells that make up your tumor. If you have a mutation that is also seen in other cancers, molecular profiling can open the door to other treatment options, including targeted therapies, immunotherapies, and access to clinical trials.
-
In the weeks ahead, we will introduce you to patients, researchers and clinicians that have used molecular profiling in their to fight against cholangiocarcinoma.
-
Join us in our efforts to improve patient education by making a gift today.
Hello, my name is Porter and I have been living with cholangiocarcinoma for 11 years. Official diagnosis was confirmed back in 2013 at the age of 34 with stage 3 intrahepatic cholangiocarcinoma.
Six years ago, treatment options for cholangiocarcinoma patients were very limited. Most of us were only offered a standard first-line chemotherapy regimen such as Gemzar and Cisplatin. For many, this regimen can have very little effect on treating this cancer.
Over the last 6 years I have been through multiple chemo regimens and surgeries on both my liver and lungs. I have had genomic testing done on both liver and lung tissue two times. Both reports revealed I have a FGFR2 fusion-mutation.
After my last liver surgery in Jan of 2017, tissue testing again revealed the FGFR2 mutation. Shortly thereafter I started a clinical trial targeting that specific mutation. I have now been on this targeted treatment for almost 2 years. This treatment has made a huge and positive impact on my life. Not only did I have initial significant shrinkage, this treatment has been night and day compared to the chemo I was on. As my oncologist likes to say “my cancer is on vacation” and although we are not seeing much shrinkage at this point, it is keeping my cancer at bay.
My disease continues to be stable with no progression. Because of this targeted treatment and the tolerability, my children and I live fairly normal lives on a day to day basis and my quality of life is at an all-time best. This is probably the best I have felt over the last 6 years.
One big lesson I have learned over the years with cholangiocarcinoma is one size does not fit all. Thanks to genomic testing and CCF’s Mutation Matters campaign, we are increasingly seeing more patients being offered individualized treatment plans.
-Porter
Campaign for the Cure Week #1: Read Michael’s Story
Where do I start when it comes to the absolute importance of having this information?
I’m currently recovering from a partial resection that was never supposed to be an option. Through self determination and wonderful CCF advocates, I have had a say in my treatment and path. Andrea, Cait and Melinda (CCF) had a lot to do with all of it. I intend to continue to help others in their fight to get the best care available.
Being a part of your own treatment is important, but so is hope and the courage to fight. Molecular profiling gives you exactly that!
-Michael
