Donate to the July 2019 Campaign for the Cure

Campaign for the Cure Week #4: Hear from Dr. Bardeesy…

Genomic testing has shown that every cholangiocarcinoma patient has a distinct set of molecular mutations. In many cases, specific therapies can target these mutations, benefiting the patient. The development of personalized treatments based on genomic testing of cholangiocarcinoma represents an important step forward in the treatment of this disease.

The Cholangiocarcinoma Foundation’s Mutations Matter program will ensure that the greatest number of patients benefit from research and advances the understanding and treatment of cholangiocarcinoma.

-Dr. Nabeel Bardeesy

Campaign for the Cure Week #3: Read Dr. Shroff’s Story

 The “Mutations Matter” campaign is an incredibly important program from the Cholangiocarcinoma Foundation.

I am a clinical researcher at a large cancer center who specializes in cholangiocarcinoma. I see newly diagnosed patients with this disease who routinely present as referrals from the community and I am surprised at how few of them have already had molecular profiling done. Being at a high volume center, we always order this type of profiling at our first visit with patients, and thus I had a skewed perspective in thinking that doing this testing was commonplace and becoming “standard”. Unfortunately, this is not the case and a large-scale effort at educating patients, caregivers, and clinicians about what molecular profiling is, why we should do it, and what implications it can have for treatment is imperative.

I applaud the “Mutations Matter” program for taking on this effort and for bringing it into the spotlight. Molecular profiling is the cornerstone of our approach to cholangiocarcinoma and it is essential for ensuring that our patients have access to the best possible drugs for their disease. We need to continue to educate patients and physicians so that we can make this as routine as doing a physical exam. Kudos to the Cholangiocarcinoma Foundation in their tireless efforts to spread awareness and to empower patients with knowledge so that we can eradicate this disease.

-Dr. Rachna Shroff

Campaign for the Cure Week #2: Read Porter’s Story

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