Bile duct cancer patient: "It feels like hope"

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cindymcconkey135.jpgBy Cindy McConkey Cox

"Are you nervous?" my daughter asked as I was getting ready for my first proton radiation treatment at MD Anderson.

 "No, I'm excited," I responded. "This just feels right."

At the age of 54, and after years of going to the gym faithfully to work out three to five times a week, eating blueberries and yogurt almost every morning, working at a job I love and spending my spare time doing just about anything I could do outside -- yard work, hiking, snow skiing, even surfing and rock climbing -- I was diagnosed with cancer. Cholangiocarcinoma -- or liver bile duct cancer, to be precise.

After my friends and family did some research, I decided to come to MD Anderson for bile duct cancer treatment. I came to MD Anderson for my initial visit but underwent chemotherapy at home in Tennessee. Then, I returned to MD Anderson for a clinical trial using proton radiation.

Coming to MD Anderson for bile duct cancer treatment

I was happy to be back at MD Anderson. On the surface, that might sound strange. Being 780 miles away from my home, family and friends. Alone in a one-bedroom apartment, in a strange city with no car and a two-mile trek to receive daily doses of an experimental radiation treatment.

But you didn't meet Alex, the driver who picked me up at the airport and delivered me to my new home away from home. He didn't just drop me at the entrance of the apartment complex with my bags at my feet. He found a place to park, wandered the hallways to help me locate my apartment, then went back and carried my bags to my door.

You didn't see the beautiful flower arrangement and basket of fruit that were sitting on the counter when I opened the door, sent by my co-workers.

You weren't here when Al, the brother of some dear friends, dropped off a bicycle to give me more mobility -- transforming a 50-minute walk to my treatments into a 25-minute bike ride, making me less reliant on the shuttle schedule.

And you haven't had your soul soothed on a daily bike ride through the nearby Hermann Park on these sunny, 70-degree days in the dead of winter.

What cancer treatment feels like to me
"Does it hurt?" my daughter asked after the treatment.

"No, not at all," I responded. "It feels like hope."

I sensed it in the demeanor of Prajnan Das, M.D., professor of Radiation Oncology, when he shook my hand and told me how glad he was that I was at MD Anderson.

I saw it in the eyes of the two women who worked so hard to get my treatment approved by the insurance companies and who greeted me with big hugs when I arrived at the MD Anderson Proton Therapy Center.

I read about it in the very personal notes from patients and families that line the walls on the way to the treatment room.

And I'm filled with it while lying perfectly still on my back, engulfed by the multimillion dollar proton radiation equipment operated by a team of bright, young technicians guiding the proton beams into my abdomen while the Eagles playlist drifts through the room.

After weeks of stress and frustration from battling the insurance companies, I'm finally here getting the treatment I need. And I've got a peaceful, easy feeling.


Hello Cindy..

You have many supporters in your battle because many of us are fighting ourselves And as it says in the scriptures "If God is with us, who or what can be against us" Hang in there (I know you will..You are a BEAUTIFUL woman, I love you and your story inspires me..

Thank You

I have bile duct cancer. Can you help me? What do I have to do to get help? We have proton treatment in Norfolk VA. Should I try this treatment?

It's different for everyone, so it's best to talk to your doctor. If you would like to speak to one of our health care information specialists, please call 1-877-632-6789. You're in our thoughts and prayers.

In August 2007 I was diagnosed with cholangiocarcinoma. I lived about 300 miles north of M.D. Anderson. My local oncologist sent me to MDA and for the next 9 months, I would travel to MDA, get tests, see my MDA doctor, and then he would prescribe chemo that my local oncologist would provide. The tumor did shrink by about half, and in the summer of 2008 I had about 6 weeks of aggressive radiation (and oral chemo). The radiation caused some issues that had to be fixed, but the cancer is GONE....... I have been cancer free since my radiation and have even been released from MDA. I hope you have the same result.......I credit my faith in God, prayers and the excellent doctors and staff at MDA for my healing. You are right - MDA feels like hope.

Hello Cindy, enjoyed reading your success story today. Your story really helps those dealing with cancer issues regardless of what specific illness they are fighting. I have been dealing with pancreatic cancer since 2009 and in just a few months will pass the magical 5 yr survivors milestone. I too went to MD Anderson in 2010 to consult about my treatment plans with some of the very best pancreas cancer doctors anywhere. I am presently traveling through Alaska this summer as part of my personal victory over my cancer and just wanted to tell you how much success stories help cancer victims and their families. I have written about some of my five year cancer battles for the PANCAN support organization and still receive notes from people who tell me how much I have helped them cope with whatever they are dealing with. Be well. Gary

Hello Cindy,

Your comments are so encouraging, and I hope your day is as beautiful as you are.

I was diagnosed with cholangiocarcinoma in June 2014 and currently receiving Chemo @ MDA. I don't remember if you shared how long you received chemo and your outcome with the current Proton Radiation Treatment.

This is all new to me and unsure of what questions or information I should be seeking now.

Thanks for sharing and have a terrific day.

Chattanooga, Tennessee

Hi Sally, Cindy asked me to send you the following message:

Sally, first I apologize for taking so long to respond to you. I suspect you are pretty far along in your initial chemo treatments, if you haven’t already completed them. I initially received treatment with Gemzar and Cysplatin – two weeks in a row, then one week off – for four cycles over the course of three and a half months. While I was nauseated at times and had some days when I was fatigued, overall I tolerated the regimen pretty well. That was followed by three weeks of proton radiation treatment at MD Anderson, which involved quite a battle with the insurance company to get approved. The folks at the Proton Radiation Center in Houston were awesome in working with me to gain that approval.
As for results, this did the job it was meant to do. When I returned in three months following the proton radiation for my blood work and scans, the initial tumor was determined to be necrotic – basically the cancer cells associated with that tumor are dead.
Unfortunately, cholangiocarcinoma is aggressive, particularly in those of us under 70, and a second tumor was discovered in my scans in August. It is much smaller than the initial tumor, and I am currently undergoing a different regimen of chemotherapy – Gemzar and Xeloda – with the plan to follow that with a different type of radiation – radiofrequency ablation.
I continue to feel strong and have good energy, working a regular schedule and maintaining my physical activities for the most part. I believe all of this is important to maintaining balance and not allowing the cancer to take over my life.
I hope this is helpful. And please let me know if you have any additional questions. Also, for more regular updates on my situation and dealing with cholangiocarcinoma, you can follow me on Caring Bridge.

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