andy12
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Dr. Bassam Estfan is my wife’s oncologist. We’ve been very happy with him. He’s proactive, patient, he listens and most importantly, he communicates. Duke – what trial are you trying to enter?
Lainy, Matt – we are a U.S. State Department family that was posted in Beijing, China when we found out my wife had a large mass on her liver. Within a couple of days we were out of China on a plane for the Cleveland Clinic to get her treatment. She was diagnosed with intrahepatic cholangiocarcinoma in early February. Unfortunately, resection and transplant surgery are not possible so she is receiving a steady diet of gemzar and oxaliplatin. Foundation One results returned showing she exhibits the BRAF gene mutation so we’re considering joining the clinical trial using combination therapy of Dabrafenib and Trametinib – drugs typically used for melanoma patients but have shown much promise for CC patients (NCT 02034110). I’ve only been able to find two other CC patients who have tried this clinical trial. BRAF is very rare amongst chlolangiocarcinoma – less that 5% of patients have it. This probably explains why it’s so hard to find people to discuss the treatment. We are headed to MD Anderson next week for an appointment with Dr. Javle. I’ve been pounding the internet pavement since the day my wife was diagnosed. Not everyone has the time, energy, or ability to research the internet so I figured I would try to bridge that gap by helping people connect with fellow patients that can answer their questions.
Sure Matt. I find the best way to make decisions is by talking to people who have already gone down that road. I’m pretty active in that I reach out to people via a combination of emails, phone calls, and Facebook. For example, my wife is considering joining a particular clinical trial and we had some questions about how it works. I scoured Facebook to find people talking about the trial then instantly messaged them. Within a few minutes I was on the phone with another CC patient who spent an hour with me on the phone telling me about his experience with this particular trial. My wife and I are now armed with more information to base our decision. All this was done in a matter of a few minutes because I’m willing to reach out and make phone calls. Not everyone is comfortable doing that. Perhaps I could help people do those kinds of things.
