In April of 2022, I went to the ER at Baylor Scott White Grapevine with a pain in my back that I thought was kidney stones. Two hours later, I learned that I had a tumor in my lower sigmoid with metastasis covering fifty percent of my liver. I’m in my early forties, have a 6-year-old daughter and a wife of 16 years and I have stage 4 colon cancer.
I was admitted to the hospital that night to have a liver biopsy the next morning and a colonoscopy the following day. After a failed colonoscopy due to the tumor blocking the colon, it was decided I would need a lower anterior resection to remove the tumor blocking the path. The colon surgery performed by Dr. Simmang was successful and I was released from the hospital a few days later to start treatment with the Texas Oncology doctor that admitted me to the hospital.
I started treatment at Texas Oncology in early June. My oncologist at the time started me on FOLFOX with Mvasi and a pre-treatment of Emend for nausea. The Emend caused an anaphylactic reaction, so I was switched to other anti-nausea medications. Treatment was going well at Texas Oncology, but as it became clear my oncologist did not have the connections to resources like top liver surgeons or interventional radiologists, I needed to advocate for myself to make me into a cancer survivor. Plus, he was focused on standard of care guidelines and I needed more innovation due to the critical status I was in.
My wife started her research the week I was in the hospital and we made a trip in mid-June to consult with an oncologist at MD Anderson. The MD Anderson oncologist was less optimistic about my chance of survival than my Texas Oncology oncologist. To be fair, we did not get the oncologist a family member oncologist recommended for us and the oncologist we received did not specialize in colon cancer. We quickly decided MD Anderson was not the path for us and my wife continued her research.
By August it was decided, I wanted to meet with Dr. Nancy Kemeny at MSK. My wife worked with her team and she agreed to meet with me in early September. We got on a plane to New York and met with her and her team the next day. After 2 hours of meetings with her team and five to seven minutes with her, I knew she was my doctor. More important, she decided to take me on as a patient because she thought she could help me. The way Dr. Kemeny worked is she reviewed everything; your past treatment history, CTs, MRIs, PETs, biopsies, bloodwork and all the information her team gathered 30 minutes earlier, before she walked in the examination room with you. She would not have taken me on if she did not think she could have helped. She was not afraid of taking on some of the most challenging cases either. I was about to spend a lot of time in New York. I returned home to have my last two treatments at Texas Oncology before changing oncologists.
One week after my first meeting with Dr. Kemeny, she presented me to the cancer board at MSK. They decided that the best plan was for me to have an HAI pump implanted to deliver FUDR along with my systemic chemotherapy. Dr. Kemeny called me shortly after the board meeting and asked if I could come back to New York to meet with surgical oncologist Dr. Kingham. I met with him the following week and set my surgery date for early October 2022. I show up to New York a day early for pre-surgery testing and then went to my hotel to rest before surgery the next morning. I got a call just after midnight from one of the fellows on the surgical team telling me I tested positive for COVID-19. My surgery was rescheduled for November.
I had my HAI implanted and headed back to Texas a few days later. Once I was cleared from Dr. Kingham, Dr. Kemeny started me on FOLFIRI and sent me home. She knew my neuropathy was getting pretty bad from my FOLFOX treatment back in Texas, so she decided it was time to switch.
Treatments started off well at MSK, but I could save a lot of traveling to New York if I found a place to do every other treatment in Dallas. UT Southwestern (UTSW) was the only place that could flush the chemo out of my HAI pump, so I reached out to them. After a couple weeks of calling UT Southwestern with not a single call back, I reached out to my MSK team to see if they knew anyone that could help. Less than an hour after my message to Dr. Kemeny, I received a call from both oncologist Dr. Kazmi and surgical oncologist Dr. Yopp’s offices to schedule appointments. I had a few more bumps in the road with UTSW, but I started chemotherapy with them the week of Thanksgiving 2022.
I went on getting treatments at MSK and UTSW with scans every two months until March 2023. In March, I picked up COVID-19 again. The treatment for that and a mistake by my UTSW nurse practitioner left me off treatment for six weeks. My liver tumors had not been shrinking very quickly as it was and the unplanned chemo break caused the tumors to grow. Dr. Kemeny started me on panitumumab and Mitomycin through a side port needle in my HAI pump during infusion. Plus, I stayed on FOLFIRI and FUDR. By my next scans two months later my tumors had shrunk a lot. She took my results to the tumor board, without telling me, and I received that surprised call from Dr. Kemeny that it was time for a liver resection.
I had my liver resection in July of 2023. It went well, but not as planned. It was supposed to be a surgery to treat both the left side of the liver with a high tumor burden and the right side with just a few spots. Due to complications, Dr. Kingham could only treated the left side. I recovered from surgery in New York and resumed chemotherapy before returning home. On my return visit to MSK, I got the news I knew was coming. Dr. Kemeny was retiring and September was going to be my last appointment with her. I went on to have that last appointment in September and then I transitioned to Dr. Cerek.
Dr. Cerek is a very kind person and very passionate about treatment research. I went a couple months doing treatment with her by only having appointments with her staff. It became very clear that her staff was not at the same level as Dr. Kemeny’s staff. I finally got to meet with Dr. Cercek and go over what was next for me. She had me meet with one of the IR doctors to discuss ablation on the right side of my liver. Early in the conversation I learned this IR doctor was a one trick pony and that trick was Y90. I happened to run into Dr. Kemeny one more time to share this plan with her. She directed me back to ablation. I knew I was blocked at MSK, so my wife started reaching out to City of Hope to consult with Dr. Fong. Dr. Fong was concerned about the complications from my last surgery which was likely due to weight gain I had over the past 18 months from steroids used in treatment.
I worked on my weight loss and continued treatment until April 2024. During my appointment with Dr. Cerek I came back with clear scans. I was also having a couple of my toes bleeding through my shoe due to a panitumumab infection. We decided to have a chemo break.
I went on to have clear scans every two months until October of 2024. However, before my October scans, my August bloodwork showed my bilirubin went from a twelve-month average of 0.6 mg/dL to 2.5 in just one month. Dr. Cerek reviewed the imaging with Dr. Kingham and their thought was bile duct damage from chemotherapy. Dr. Kingham put in a referral for me to have a liver transplant workup with transplant surgeon Dr. Chapman and gastroenterologist Dr. Crippin at WashU. I had new scans in October 2024 and I learned I had a tiny tumor growing on the right side of my liver and another tiny tumor pushing against my bile duct on the left of my liver. This would explain the rise in bilirubin that happened a couple months before.
Before I could be listed for a transplant I had to show stability with my cancer. To address these two tumors, I would have an ablation on the right-side tumor and an IRE on the tumor next to the bile duct by IR Dr. Giardina. I would also have an ERCP and stent placed in another bile duct a day later by gastroenterologist Dr. Trieu. Both happened in November 2024 with a few nights in the hospital. I started back on treatment and was listed on the transplant list at the very beginning of 2025.
A few weeks later I would have new scans at MSK. At this time, I was also very weak for unknown reasons. I was not sure if it was chemotherapy related or something else. MSK paused me on chemotherapy and sent me back home. I told my transplant team about my weakness and they wanted my images from MSK. They got them a week later, but it was clear to them what was happening. I had a liver infection, and it spread to my lymph nodes and pancreas. MSK had missed it. My transplant team had me come back to St. Louis for an urgent ECRP, stent replacement and biopsy by Dr. Trieu. The biopsy was to rule out cancer. My liver recovered quickly from the ERCP and the biopsy was all negative. The transplant team still had to pause me for the transplant list until my liver was 100%.
I started chemotherapy back in April and was also re-listed on the transplant list. A few weeks later I was able to get exception points added to my MELD score. In May I would get my first transplant offer and a few days later I would get a second transplant offer. Both fell through due to issues on the donor side. In July I would get my third offer and it was a go!
I got the offer around 5pm in Texas and was admitted to the hospital around 9:30pm at Barnes Jewish. At 4am the next day I was sent to pre-op and was in surgery by 6am. I woke up in ICU about 10pm the same day. I recovered in the hospital for 4 days and then I was released.
I held off on writing a blog on my cancer battle as I have kept my cancer battle mostly private. I have since thought there might be some benefits with me sharing my medical story so that others can learn from my successes and failures. I’m 8 days out from my liver transplant and I am starting my blog. The plan is that my wife and I will go back to write detailed blogs on each of the events that I wrote about in this summary. I will also write real time updates as life goes on and write a few opinion pieces as well. Please keep checking back as I hope this information will help others in the battle.