CHOLANGIOCARCINOMA SURVIVOR STORY: A Mother-Daughter Journey of Hope, Faith, and Triumph Part |||

SECTION 3: MEDICAL DETAILS

FOR MOM:
What type of cholangiocarcinoma was it? (location, stage)

I was diagnosed with perihilar cholangiocarcinoma. We weren’t given a specific stage initially, but it had not spread, and based on the location and stage, I was a possible candidate for transplant. That’s why the transplant team got involved right away. There was an interdisciplinary approach from the first meeting. Because we were given the diagnosis of cholangiocarcinoma at the first hospital, my daughter knew—having worked at University of Chicago—that if I was going to beat this incredibly aggressive cancer, I had to have my care moved there where the best doctors in the country could give me the best chance.

Were there doctors or medical team members who really made a difference?

The entire care team at University of Chicago is worth mentioning. We will forever be indebted to this hospital and the people who took care of not just me, but walked with our family every step of the way. I knew I had a chance when I found out my oncologist was Dr. Joseph Franses, one of the best in the nation for treating bile duct and liver cancers. The nurses and nurse practitioners were exceptional and there with us every step of the way. When I had my first appointment at the University, I saw Dr. Anjana Pillai, gastroenterologist and transplant hepatologist, was part of the interdisciplinary discussion. My daughter had worked as a Medical ICU nurse for many years at this hospital and took care of many of Dr. Pillai’s patients. She had witnessed how well Dr. Pillai took care of her patients for many years and the lengths she was willing to go to ensure her patients had great outcomes. Not everyone wins this battle, but people have a better chance when they have people like Dr. Pillai and Dr. Franses in their corner.

Down the line, we met the rest of the transplant team—Dr. Barth (my transplant surgeon), Dr. Lamatina (my daughter’s surgeon for liver donation), Dr. Te (hepatologist), and the nurses. They worked so hard to get everything in place. When I was finally approved for transplant, they made it happen before we could even blink. And I’d like to mention that there is a risk of complication with every surgery, but my daughter and I walked out with zero complications. Again, not everyone’s situation will turn out that way, but it’s worth mentioning as a testament to how good they are at what they do. As a liver donor, my daughter was taken care and had her comprehensive workup done by Dr. Te, who did absolutely everything to ensure her safety. Having worked with her for many years, my daughter knew she was in the best hands.

What treatments did you have between diagnosis and transplant?

Initially, I received FOLFOX because the team couldn’t get my bilirubin down after a couple of ERCPs with stent placement and another procedure where they placed a biliary drain. After a couple more procedures and the addition of another biliary drain, the bilirubin finally came down to a level that was safe to give first-line treatment: gemcitabine, cisplatin, and durvalumab. I can’t remember exactly how many rounds of chemo I had, but I believe I was going through treatment for about eight months, with a couple of pauses in between because my blood counts had dipped. When I was done with IV chemo, I was started on oral chemo for about a month. During this time, I also had to go through several biliary drain exchanges. I ended up in the hospital a couple of times with infections from these exchanges, one of those times being sepsis.

How did your body respond to treatment?

The tumor was responding well to treatment on every scan. The cancer markers were also coming down consistently.

FOR YOU (CAREGIVER):

How did you navigate the medical system and decisions?

This was all a little bit easier for me having worked at the hospital for many years. I would say that it’s important to build a relationship with your care team. If you are at a reputable institution that treats cholangiocarcinoma, trust your team. Ask all the questions if you don’t understand what is happening. If something isn’t sitting well with you, always seek a second opinion. I did not have to seek a second opinion, but I have heard stories about patients at other hospitals who weren’t given all their options. Believe it or not, not every hospital is in the know, and that’s why I think it’s important to see someone at University of Chicago or another major medical center when dealing with cholangiocarcinoma or other aggressive rare cancers. Also, stay off of ChatGPT when it comes to medical advice. Talk to your doctors. Were there insurance or financial challenges? How did you handle them? My parents had great insurance, but there is a great financial team at University of Chicago who can walk you through this and help explain things.

SECTION 4: THE PATH TO TRANSPLANT

FOR MOM:

When did you find out you were a transplant candidate?

After the final PET scan and biopsy of something that lit up behind my arm on the PET scan (which was negative, but they checked absolutely everything before they gave the green light). Once all those results came back negative, I found out that I would be listed during one of my doctor’s visits.

What was that moment like?

It’s all surreal to me, to be honest. It wasn’t even real when we got the call that my daughter was the candidate to donate. I don’t think it was truly real until the day of surgery. When everyone was surrounding us at the hospital on the day of the transplant, I said to myself, “This is real. My daughter is giving me her liver to save my life.”My daughter and her best friend both got worked up to be living donors, and my daughter ended up being the match. I was nervous about putting their lives in danger to save myself. I asked myself, “Am I being selfish?” But I was reassured by the transplant surgeons—Dr. Barth and Dr. Lamatina—that they would do everything to make sure the person donating would be okay. They go through a very extensive workup to ensure donor safety.

What did you have to do to prepare for transplant?

Lots of lab work, imaging, doctors’ visits, and lots of prayers. To even get listed for transplant they workup every part of your body (colonoscopies, echos, cardiac CTs, MRIs, PET scans, mammogram, you name it they work it up because they want to make sure everything is okay before transplant) I had so much faith in my doctors and knew I was in good hands. Regardless of the outcome, I was ready.

What was the waiting period like?

I was more of a nervous wreck knowing that my daughter or her best friend would be the liver donor. I was more worried about them than myself. I didn’t worry about myself because I had already come to terms with the outcome, regardless of what it was. But my girls—I didn’t want anything to happen to them. I can’t stress enough that I never had a moment when I didn’t trust my doctors and my care team. I knew they had me and them.

What was the hardest part of waiting and preparing?

The uncertainty and the anxiety about my daughter’s safety. Also, just trying to stay healthy enough to make it to transplant while dealing with all the treatments and procedures.

Were there times you weren’t sure you’d make it to transplant?

Definitely, because this cancer is so aggressive. Anything can happen at any moment. But I couldn’t allow that to get me down—there were days and nights, trust me—but I had to keep going. One thing that I noticed through this process of going through transplant: the sun is going to shine whether we want it to or not, and I had to choose my mindset. Most mornings, I would look outside, and the minute I saw the sun shining, I would say, “Okay, I’ve got this.” I will say the rainy days were hard, and so were the early, early mornings. But when the sun came out, everything changed for me.

FOR YOU (CAREGIVER):

What was your role during the preparation and waiting period

My best friend and I both got worked up to be living liver donors to my mom. It was very nerve-wracking because the testing to get approved for transplant can take weeks. But they have very strict protocols at University of Chicago to ensure the utmost safety of the donors. Luckily, the transplant coordinators, Megan and Katie, did such an amazing job holding our hands through the process.

How did you support your mom while also taking care of yourself?

I think my mom supported us more than we supported her during this time! All kidding aside, we just talked to each other about our fears, but also all the cool things we were going to do together after transplant because it was a second chance at life. We also relied on the transplant team for support. They eased our fears and calmed our minds.

What kept you going during the uncertain times?

Prayer. Everyone’s prayers, my prayers. The idea that there is hope even in the most hopeless moments. I have two beautiful children who kept me pushing forward. Also, having been raised by a mother who I would consider having a stoic mindset: “The sun is going to shine whether I want it to or not. The world is going to continue whether I want it to or not, so I have a choice to turn this pain into purpose for myself and for others. I will not crumble.”

How did you handle the waiting?

Through faith in God that no matter the outcome, we were going to be okay. We have a huge network of support. Our friends and family are a very tight-knit group. They really showed up for us in ways we’ll never forget.

Alexandra Feliciano – Cholangiocarcinoma Survivor & Liver Transplant Recipient & Chrissy Putnam – Living Liver Donor & Caregiver.