Diagnosed in January 2022 at 26 years old
Hi, my name is Paris Adams. I’m 26 years old and I live in Tacoma, Washington. I was diagnosed with Fibrolamellar on January 11th, 2022. I initially went to an urgent care because of several symptoms. I had been feeling very fatigued lately and had lost about 20 pounds in the span of a few months. I had also been experiencing blurred vision and abdominal pain as well as severe chronic shoulder pain. They recommended I go to the E.R so I did. After waiting about 4 hours I was finally seen by a doctor. They tested my blood and found that I had elevated liver enzymes. After this discovery, they performed an ultrasound and found a mass on my liver. This was followed by an MRI and CT scan that showed a 13cm tumor on my liver as well as enlarged lymphnodes outside of the liver in the abdominal region and a few smaller nodes in my chest. This all happened during the delta variant of Covid so I was admitted over the weekend so they could perform a biopsy on the following Monday. Over my weekend stay while waiting for my biopsy, all of the oncologists at this local hospital assured me that this was very likely lymphoma and was very, very treatable. I had the biopsy performed and was released home the same day feeling hopeful I would get through this semi easily. This turned out not to be the case. The oncologists at this hospital never actually reached out to me to tell me that I tested positive for the DNAJB1-PRKACA gene and had Fibrolamellar. I had to find out via MyChart. This diagnosis felt like the end of the world to me after reading up on what Fibrolamellar is. I had just become a father and gotten married, and I wasn’t sure how long I was going to live. I was able to get a referral to Seattle Cancer Care and began seeing Dr. William Harris. I began Gemox-lenvatinib and had 10 cycles of this chemotherapy. This was able to keep my tumors stable until about June of 2022 when scans showed slight growth of the lymphnodes. Seeing this, Dr. Harris suggested looking into a staged debulking surgery. During this month, I also started to develop slight neuropathy which would rapidly become painful neuropathy in my hands, feet, and legs. I had my first surgery on August 5th, 2022, where they removed the compromised lymphnodes outside of my liver, leaving the main tumor on my liver as well as the lymphnodes in my chest behind. This has seemed to have been effective as my liver enzymes are the lowest they’ve ever been since I’ve started having my blood tested. At this time, we’re unsure whether I should have back-to-back surgeries or start another immunotherapy.
Through all of this, my wife, my mom, and my daughter have been my superheroes. My Mom has been my biggest advocate for my health in all my meetings with oncologists and surgeons. My wife has been my biggest support at home when I was feeling horrible after chemotherapy. And my daughter has been a reminder that not everything is all bad and I have a reason to smile everyday because I have a beautiful family to wake up to each morning. Without them, I don’t know if I would have the desire to push through. I’ve also been working with Dr. Paul Kent who has been my biggest resource for Fibrolamellar. He has reviewed every one of my scans with his former team at Rush and given me much needed second opinions on my treatment plans. I’m hoping to have N.E.D. within a few years so I can start to have some normalcy in my life.
Cheers.
