Diagnosed in April 2014 at 21 years old
I was diagnosed after going out with my girlfriends to a music festival and waking up in extreme pain in my right abdomen. After tests and a biopsy, Urgent Care found that I had a large mass on my liver and one near my heart.
In June 2014, Mayo Clinic was unable to do a liver resection after a scope found more cancerous cells than expected on what was thought to be the healthy lobe. The surgeon felt that I would probably never be a candidate for surgery and sent me to their oncologist. The oncologist suggested that they could try different chemotherapy treatments to see which one might work in order to extend my life.
In July 2014, my family and I flew to Houston, Texas for testing and an evaluation with Dr. Kaseb and Dr. Aloia at MD Anderson Cancer Center. It was determined that surgery could not be done at that time but, if the tumors would respond to chemo and show any sign of shrinkage, then it could be a possibility.
I had surgery to have a port implanted at Mayo and soon after started the 5fU and Interferon chemo regimen. I began traveling every three months to Texas for CT scans while Mayo implemented and monitored my chemo treatments. After two rounds of chemo, my tumors started showing a slight decrease in size and after two more rounds, all tumors had shown 25% shrinkage which made me a candidate for a liver resection.
In November 2014, I had a bi-lobed liver resection where 70% of my liver, the lymph node near my heart, my gall bladder, and 24 other lymph nodes were removed. After staying most of the month in Texas, my family and I returned home where I completed 12 rounds of 5fU and Interferon as preventative chemotherapy treatment. I had no signs of disease and was in remission for a year and three months and was treatment free for a total of eight months!
In February 2016, I had my first recurrence; a lymph node in my chest and a lesion outside the recto-sigmoid junction. I did four rounds of 5fU and Interferon to shrink everything down and in May 2016, I was able to have the tumor at the recto-sigmoid junction surgically removed.
After recovering from that surgery, it was discovered that the size of the lymph node in my chest had doubled in size over the two months I had to be off chemo treatment in order to be operated on. I was advised to undergo five more rounds of 5FU and Interferon, which I completed. I qualified for a thoracotomy to remove the lymph node and I had it removed shortly thereafter.
I stayed on 5fU and Interferon for a couple more years and had a couple more surgeries during the time MD Anderson led my care. I had my xiphoid process removed because a tumor was touching it and, in 2019, I also had my second liver resection with them.
After my second liver resection, I learned that it had spread to my lungs. MD Anderson was going to put me in a trial that had proven not to work for a couple fibrolamellar patients, so it was time for me to move on and seek other providers and opinions.
In Summer 2019, I had my first consultation at Rush with Dr. Kent and his team. They decided that another liver resection, just 6 months after my last, was in my best interest as well as bilateral cryoablations of spots in my lungs. I completed that then tried triple therapy which turned out not to work for me.
After triple therapy, we tried Lenvima and Opdivo which also failed. Next, we tried Gemzar, Oxaliplatin, and Lenvima which kept me stable for quite a while. The Oxaliplatin was awful and caused neuropathy that I live with to this day. When that stopped working, we decided to go to UCLA for a biopsy and have my husband, Zak, drive the specimen to Dr. Nagourney for further testing. The best option for me, based on Dr. Nagourney’s work, was Irinotecan, which I most recently tried and lost all my hair. Unfortunately, it proved not to work, and I have now gone back to Lenvima, Gemzar, and Opdivo.
In the background, I have also had 5 different areas of my body radiated using SBRT. I have had it spread to my sternum bone and breast and we radiated that. I have had liver radiation sessions as well as 3 areas of my lungs radiated. I also had a Y-90 liver embolization procedure in 2020.
My current status is that my last treatment failed, and I’m trying an old treatment again in order to hopefully find stability. I also just finished getting lung radiation to prevent coughing up blood which happened to me earlier in the year. I’m awaiting my next scan to know the results of my hard work.
This road has been harrowing, but I am thankful to have a job and most of all for my mom and husband. I have been so blessed by them and by all the things they have done for me along the way. They fight and advocate for me when I can’t and we make a great team. I don’t know what I would do without them. It’s time we find the cure!