Survivor Story: Anne-Marie Norris

I was diagnosed with Stage 4 Metastatic Bile Duct Cancer (Cholangiocarcinoma) in April of 2024. Prior to my diagnosis, I was bowling with my husband in February when I noticed a sharp, jarring pain in my upper right abdomen. The pain was so sharp that I went to see my PCP. She said it was probably a pulled hip flexor muscle and prescribed muscle relaxers for me. The pain continued to intensify. I was unable to sit upright in a chair nor turn my body to the right without jumping out of my skin. I went to a walk-in iCare seeking relief from my pain. The attending PA believed I was having an appendicitis attack and told me to go to the ER immediately. I was given a CT scan, and it was there that they discovered two large tumors in my liver. They told me to report to the attending ER surgeon’s office the following day.

The ER surgeon came in with a group of physicians and told me he believed I had liver cancer. He went on to say there are no qualified surgeons in our rural area (Altoona – Johnstown, PA) who are qualified or knowledgeable to perform liver surgery. His nurse navigator scheduled an appt for me with a liver surgeon at UPMC in Pittsburgh. The very next day, I received a call from the same nurse apologizing – UPMC in Pittsburgh did not accept my insurance. The nurse suggested I call the Cleveland Clinic. She did not have a contact number nor a surgeon referral.

I went online, searched the Cleveland Clinic website for liver surgeons, and made an appointment. I met with a liver transplant surgeon who was very kind. He ordered a preliminary blood test and we discovered my CA-A19 was over 4,600. I had no idea at the time what the score meant or how serious my condition was. The surgeon asked me a lot of questions and commented that I was “young” (age 59) to have a liver tumor. He ordered an MRI. However, they could not get me in for an MRI until June. The surgeon wanted to admit me overnight as an inpatient so I could get an MRI sooner. Again, my insurance would not cover the out-of-network and out-of-state costs. Meanwhile, my church community and friends were greatly concerned that I had not had an MRI yet … It was mid-March. My church offered to pay for the MRI at a local imaging facility. I returned to my PCP, who ordered the MRI. The quality of the MRI was questionable. My PCP sent me to AHN Hospital in Pittsburgh. It was there I met with another surgeon.

The surgeon looked over my MRI and said he was “greatly concerned” and “if I was a family member,” he would recommend surgery as soon as possible. He referred me to a satellite hospital within the AHN network for a liver biopsy. It was mid April (2024) when I was finally diagnosed with Cholangiocarcinoma. I had not been staged at this point. I returned to the surgeon at AHN in Pittsburgh. He recommended I see an oncologist in their network. I finally got to see an oncologist in May. She said she thought “chemo pills” would be my best alternative after surgery.

I went back to the surgeon and he said he would like to perform robotic surgery after he returned from his vacation and conference. He also wanted to present my case to the Tumor Board at AHN. Meanwhile, family and friends, along with my church community, were alarmed by how long it was taking for me to receive treatment. It was at that point I researched cholangiocarcinoma online and discovered your foundation. I believe it saved my life.

I called the surgeon’s office and asked for a biomarker test. I went back to my PCP, in tears. She could not believe how lax AHN was in handling my diagnosis and care. She called the surgeon’s office but did not receive a return call. I called the surgeon’s office and made another appt. When I met with the surgeon in late May, he said the only cure would be surgery. He scheduled my surgery for the second week of June (2024).

In the meantime, I returned to doing my own research through CCF. I connected with other CCF patient members on Facebook. I watched and studied the videos. I knew what my biomarker was and what the standard line of treatment should be … the TOPAZ 1 trial after watching CCF videos and talking with other CCF patient members. I demanded to see my surgeon and my oncologist at AHN, and I was armed with new information about Cholangiocarcinoma. I also requested a CCF mentor.

My surgeon met with me online. He said my oncologist was on vacation and was not able to attend the Tumor Board. He said I was probably Stage 4 and there wasn’t anything they could do for me. He said I wasn’t a “good candidate for surgery.” He said the only option I had was a hepatic pump that would directly “shoot chemo” into my liver.” He gave me 18-24 months to live. My family and I were angry and devastated.

I returned to my local PCP and she said she had a daughter who is a PA for a local oncologist. However, he was not accepting new patients and was getting ready to move to another healthcare system. She was able to get me in to see this local oncologist before he moved.

The new oncologist was angry with how AHN managed my case. He was shocked they did not order a PET scan. He was also shocked they didn’t start chemo right away with the TOPAZ 1 trial. He started me on the TOPAZ 1 immediately. He also called AHN and asked them why they waited so long. I received a call from the oncologist at AHN who told me she didn’t remember seeing me! And she said at the time I “had a mild dilation” of the bile ducts! I could not believe how lax she was with my case. I told my new oncologist about the phone call. He was infuriated and called her back. He apologized to me for the lack of care I received and acknowledged how hard I tried to find help. He placed me in palliative care and said he could offer me “quality of life.”

I started on the TOPAZ 1 trial in July (2024). My tumors responded well, and I tolerated the chemo drugs (cis/gem/durv) well. I did begin to lose partial hearing in my left ear, leading to change from cisplatin to carboplatin. By early February my CA-A19 score dropped down from 4,600 to about 180. Both my oncologist and I were elated! My tumors had shrunk from 10cm down to 4cm. The CT scan showed necrosis in the larger tumor. After I finished the TOPAZ 1 trial, my oncologist started immunotherapy with me, administering Durvalumab.

My CA-A19 scores started to climb back up quickly while I was on the Durvalumab. I was becoming increasingly anxious. CT scans were showing my tumors were growing again and there was increased metastatic activity in my liver. Alarmed, my oncologist said to me, “I need help with this!” I felt a sinking feeling in the pit of my stomach seeing his reaction. I noticed two biomarkers on his computer screen: FGFR1 and NRG1. I recognized them from my research and from the information I gathered from CCF’s videos. I pointed out the NRG1 mutation to my oncologist on his screen. He said “No, no .. you have the common mutation seen in Cholangiocarcinoma, the FGFR gene mutation. The second one is a fluke.” I remembered what CCF always teaches … get a second opinion!! And that’s what I did.

I looked up the oncologist recommendations on the CCF website. I researched profiles and made an appt with two other oncologists who specialize in Cholangiocarcinoma. It saved my life!

I saw Dr. Mark Yarchoan at Johns Hopkins Hospital (JHH) in July (2025). He is an oncologist and researcher who only sees patients with Cholangiocarcinoma. Dr. Yarchoan was also my 5th second opinion.

Dr. Yarchoan immediately picked up on both of my gene mutations. He said JHH has never seen the NRG1 mutation in the liver before. He had never seen two aggressive mutations in the liver before. He ordered a new biomarker test to be done just to be sure what we were seeing was accurate.

Dr. Yarchoan said my tumors were low attenuation. He believed in time, maybe in three years, we would be able to get me to surgery.

Dr. Yarchoan uses a patient-directed approach to treatment planning. This was different from the doctor directed approach I had experienced previously.

Dr. Yarchoan offered me a couple of treatment options. I could go back on chemo, perhaps consider a Y90, or try a new targeted therapy specifically created for the NRG1 mutation often seen in the pancreas and small cell lung cancer.

I chose the targeted therapy drug he offered, Zenocutuzumab (Zeno).

Dr. Yarchoan, appealed to the FDA to use Zeno to treat my Cholangiocarcinoma. He said I was the first patient to use Zeno at JHH.

I started Zeno at the end of July (2025). My CA-A19 scores dramatically dropped after each infusion. I tolerated the Zeno side effects quite well. Both Dr. Yarcoan and I were excited! He mentioned I may be the first cholangiocarcinoma patient in the US to use Zeno.

After being on Zeno for three months, I had my CT scan. Dr. Yarchoan couldn’t believe what he saw! My tumors had melted! He believed they may have been dead. He immediately consulted with radiology and with the surgeon, Dr. Christopher Shubert. Both doctors agreed they could treat and “surgically cure” my cancer.

Dr Yarchoan was so excited, he waited for my husband and I in the first floor lobby of the cancer center to tell me the good news! He ran over to us and said, “We are talking about a surgical cure!” I felt like a deer in the headlights! I calmly asked to meet with both doctors, radiology and surgery, to gather their recommendations.

Dr. Shubert (surgeon) said they look at 2mm photo slices of the liver to examine the depth and spread of the liver and bile ducts. He said he and his colleagues believe they can successfully remove the cancer with a hepatectomy. He said if I were to have radiation to my liver it would compromise my liver and I would not be eligible for surgery.

Dr. Shubert also said they “can’t keep up with these new targeted therapies.” He said the long-term research on them is not available, but they are seeing astounding treatment results.

Dr. Shubert said I would be the first stage 4 metastatic liver patient to have surgery at JHH.

So, on December 3, 2025 I had surgery at JHH. Typically, the surgery can last from 5-7 hours. My surgery was only 3 hours. Dr. Shubert and the anesthesiologist said it was the “most perfect surgery” they have ever seen. The Zeno had completely melted my tumors and metastatic lesions. I didn’t need any drainage tubes. I recovered so well that Dr. Shubert said I could go home the next day. I did not! I stayed for five days. 🙂 My recovery at home was quick.

I returned to JHH in March (2026) for adjuvant therapy using Zeno. I had minimal side effects. Zeno is prescribed to be used for one year. I finished my adjuvant treatment at the end of August (2026).

My CA-A19 scores have been 25-27 since the day after my surgery and have been ever since. Dr. Shubert declared me to be surgically cured on December 3, 2025. Dr. Yarchoan has considered me to be NED since that date. My ctDNA scores, CT scans, and blood work have come back normal.

That’s my story!

I am so very grateful for my life every single day! I am also very grateful to JHH, Dr. Yarchoan, Dr. Shubert, and CCF!

I’ve posted my Zeno story on CCF’s Targeted Therapy Facebook page. Since then, I have had two other Cholangiocarcinoma patients reach out to me who have the NRG1 mutation. One patient is from Canada. I connected her oncologist at Princess Margaret Hospital to Dr. Yarchoan. The other patient is from Washington state. She is from Denmark but lives in the US. I connected her to Dr Yarchoan also who is now overseeing her care. Both these patients are on Zeno now.

Thank you for making a difference in the lives of so many. Your foundation changed the course of my treatment and gave me the courage and knowledge to advocate for myself. I’m forever grateful.

Sincerely,

Anne-Marie Norris