Hi ,

I’m Melinda Bachini, Director of Advocacy for the Cholangiocarcinoma Foundation (CCF). We briefly e-met yesterday.

You’re likely experiencing many different emotions right now: fear, confusion, anger, feeling overwhelmed, and more. I’ve been there and I understand. As a 12-year survivor, I want to share my story to offer some hope and allow you to learn from my experience.

In 2009, thinking I had gallstones, I went to my primary care doctor to get checked out. He sent me for an ultrasound, where a large mass was discovered on my liver. One week later, I heard “Cholangiocarcinoma” for the first time. My response was literally, “CholangioWHAT?” I was diagnosed with Stage IV intrahepatic cholangiocarcinoma.

At that time, there was so little information available about the disease. I had no idea where to turn for help. (If you’re feeling that way now, click here to learn more about cholangiocarcinoma, or CCA).

I was a candidate for surgery—which I learned was a really good thing—and had a liver resection surgery three weeks after diagnosis. The surgery was a success but, unfortunately, three months later, cancer appeared in my lungs.

As a mother of six, I wanted to be aggressive in my treatment and immediately asked my oncologist to look for a clinical trial. He found one, but my insurance at the time would not cover the costs that went along with being in a clinical trial. Not knowing how to financially make it work, I chose not to enroll and began a chemotherapy regimen of Gemcitabine and Cisplatin.

My husband and I traveled to Mayo Clinic to receive a second opinion.

One of the best pieces of advice I can give you is always get a second opinion and get it just as soon as you can! If at all possible, get the second opinion from an expert in this disease who sees many CCA patients and is involved in the research of CCA. The CCF website houses a Specialty Map to help you locate experts in the United States. The site also highlights several options for FREE and VIRTUAL second opinions that are available to you.

My oncologist tried three different chemotherapy regimens that, unfortunately, had minimal impact on my tumors; they eventually spread back to my liver. Just when I’d decided to stop chemo and spend the time I had left with a better quality of life, I found a clinical trial at the National Cancer Institute. It’s the reason I’m able to write to you today, 11 years later.

You can read more about my cancer journey and those of other long-term survivors here.

If you’re interested in a clinical trial, you can learn more here.

All my best,
 
Melinda Bachini

P.S. In my next email, I’ll explain the importance of having biomarker testing as early as possible. I want you to have all the information you may need but I don’t want to overwhelm you. If you’d prefer to have access to all of this information at one time, feel free to browse everything now.