Diagnosed in 2008 at age 22; passed away in 2012 at age 26
I was diagnosed in August of 2008. One month before my 23rd birthday, three months after I graduated college, and two months before my wedding day. Since then I have considered myself a cancer fighter. I fight for a day that I can say I am cancer free.
Looking back I can see the signs I missed. For years I was tired all the time, but I always thought it was due to my busy work and school schedule. In the months before my diagnosis I noticed that my stomach would sometimes seem slightly swollen and tender, but I never really paid any attention to it.
What finally got my attention was horrible pain in the upper right side of my stomach. I had to leave work early twice because of the pain. Co-workers told me it was indigestion, but no matter what I took the pain didn’t go away. The only thing that relieved the pain was to lie on my side. It would hurt just to breathe but after a few hours the pain would just go away. I ignored it the first two times but the third time was the worst pain I had ever imagined. Within moments of the pain coming back I was sweating profusely and I had tunnel vision. I laid on the floor, about to pass out, and I knew something was very wrong.
My friend took me to the hospital. Waiting in the ER, the pain just went away again, and I felt fine. I told my friend I was thinking about leaving, she told me to stay. Best. Advice. Ever.
The doctor ordered an ultrasound to check my gallbladder first, then I had an MRI. Finally the doctor came in and told me they had found a large mass in my liver. He was almost in a panic and asked me tons of questions. For some reason I was very calm and still wasn’t too worried. The word cancer had not crossed my mind. The doctor told me it was probably a benign liver mass and referred me to a surgeon. As soon as he left the room my husband’s grandmother exclaimed, “I’m so glad it’s benign! When you hear the word mass you think CANCER!”. Immediately I thought “ Holy crap! You do think cancer!”
My surgery was about two weeks later. A few days after I heard the words, Fibrolamellar Hepaticellular Carcinoma, for the first time. As soon as I got home from the hospital I googled those words. My doctor had told me it was rare, but I didn’t know how rare until I saw my first search result: a case study older than me, from Japan. Eventually I found a little more information, but not much.
After my surgery I was told I was cancer free. The tumor was large but was removed with clean margins and there was no sign of cancer elsewhere. I took six weeks off to recover and spent the time planning our wedding. Then, on a beautiful fall day in October I married my best friend.
Six months after my surgery I had a follow up CT. We were told the scan was clean. We would find out later that it wasn’t. Another six months passed, I worried the whole time. I could feel that something wasn’t right, I was having unusual pain and even went to the ER where they gave me an antacid and a pregnancy test, then told me nothing was wrong.
Finally in August of 2009, one year after diagnosis I had another CT. This scan showed what I already knew, the cancer was back. This time however I was told that the tumor was too big to remove and I would have to try chemo and radiation.
I was being treated at a large regional hospital about four hours away. When I met my oncologist for the first time he said that we were going to have to treat this “outside the box”. He was right about that, but I still should have run away screaming for a second opinion at a better hospital. My only advice I have for a FHC fighter is to find a doctor who has actually met someone with FHC. Experience with this disease is rare, but you want someone who has more knowledge about FHC than “oh yeah, I remember that from med school”. (A doctor has said that to me before!)
It was decided to do Xeloda chemotherapy and high dose Cyberknife radiation. I started the Xeloda right away, I felt great and really didn’t notice any side effects. A couple of months later I started radiation. I received a radiation dose about equal to what is normally given over the course of twelve weeks , however mine was given in three sessions over a week and a half. Shortly after this I slowly started to feel sick.
First was just fatigue and loss of appetite. Then I started experiencing horrible pain, mostly at night. It would wake me up and keep me up for hours. I told my doctors about it but they told me there was no reason for me to be in pain, that it was too early for another CT and basically it was probably just in my head. I called a gastrointestinal doctor that I had seen a few times for acid reflux. His cousin had passed away from FHC and he had told me if I ever needed anything to call him. He did some tests but couldn’t find any reason for my pain, but he did believe me and he wrote me a script for some pain meds.
I was and still am scared of pain pills. At first I refused to take them but eventually I couldn’t take it anymore. Sometimes I took several a night; I also slept with a giant bottle of Maalox that I would chug constantly. This was all happening around the holidays. My family was scared and we didn’t know what to do.
I saw my radiation oncologist right after Christmas. He suggested that we go somewhere else for treatment. He admitted that they really didn’t have a good plan and didn’t know what to do. He asked us not to repeat what he said. He mentioned MD Anderson, Memorial Sloan Kettering, or Johns Hopkins.
MD Anderson was the first to give me an appointment. So the first week of February my husband, mother and I made the ten hour drive to Houston. I could tell I was running out of time. I could hardly eat anymore, every time I moved even slightly my heart would pound and I would get dizzy. Just walking from the couch to the bathroom in our tiny condo would make my heart pound like I had just run a marathon. A couple nights before we left for Texas I noticed black tarry stools. We knew that it was bad but we decided not to go to the local hospital. We needed to get to MD Anderson as soon as possible.
My first day at MD Anderson I was scheduled for bloodwork and a CT. I spent the whole day in a wheelchair. The only time I even stood up was for the chest x-ray. This took every ounce of strength I had. The rest of the day I slumped in the chair hardly able to hold my head up. While we waited for my CT my mom’s phone rang, it was the lab. The guy told us not to leave the hospital, to go to the emergency center as soon as I had my CT. He as talking fast, so my mom could barely catch what he was saying, just something about my bloodwork.
I spent the next couple of days in the ICU. It turned out that the tumor had perforated a hole into my duodenum, I had been experiencing internal bleeding and my hemoglobin count was 4.5, which I was told was really, really not good.
I met my surgeon my first day in the ICU and I trusted him immediately. Dr. Vauthey came in with a pack of other doctors, and physician’s assistants. He spoke quietly but everyone listened to every word. He was very concerned about why I hadn’t had the tumor removed before, and why I had done Cyberknife. I told him what my old doctors had said, he shook his head and looked at the floor. Then he told us that I was in a very serious situation. The surgery I needed was going to be very difficult because the Cyberknife had caused a lot of damage to surrounding areas.
Dr. Vaughty and his assistant Dr. Bose were awesome. As soon as my hemoglobin level got better (with the help of a few blood transfusions) they performed a liver mass resection that I had been told was impossible, plus a Whipple procedure to remove the hole and damage left by the radiation. I spent a total of twenty nine straight days in the hospital. My recovery was hard. I struggled to eat and to keep anything down, I was still in pain, and it seemed that every other day I would come down with a high fever, because of fluid collections causing an infection.
Each time I would have to have another scan, sometimes in the middle of the night, to find the source. New drains were placed and old ones were removed, it seemed to be a never ending cycle. The last drain was removed in August, seven months after my surgery. Recovery was difficult but I was getting better everyday. My mom and aunt stayed with me in Houston for three months, finally in late April I was able to go back home. Just in time too, my husband and I had been in the process of buying a house, it was a short sale and in early May it went through.
We spent the summer remodeling and traveling back to Houston to monitor the drains. I also started back to work part time. In September I had a new CT, which showed four new tumors, all in my liver. I was shocked. I had been feeling great, and for the first time hadn’t really prepared myself for bad news. Dr. Vauthey told us that surgery wasn’t an option right now, and referred me to an oncologist who treats FHC, Dr. Kaseb.
I hadn’t had a good experience with my previous oncologist so I was worried until I met Dr. Kaseb. I had researched him and found someone else with FHC that he was treating. I was happy that he had experience with this disease. He started me on 5-Fu and Intron A chemotherapy. I did this from October through May. Overall, treatment went well, I felt good for the most part, I did lose a little weight and right before Christmas my hair started to fall out. I didn’t lose it all but it thinned a lot and made my scalp hurt. I ended up just shaving it all off. Most importantly the tumors were stable. However, my last scan in May showed some increase in size. Dr. Kaseb said that it was to be expected because eventually chemo loses efficacy and you have to switch treatment.
I will be starting Xeloda again in mid-June, but this time it will be paired with an Avastin drip. I will have two rounds of this and then in late July I will be undergoing Y90 treatment. This is a type of radiation treatment that goes into your liver through your groin and injects millions of radioactive glass beads directly into the tumors.
When I was first diagnosed there was so little information out there, I felt like I was the only one with this disease. Eventually I found the deliveracure website and first heard of Tucker and his foundation. I followed his treatment and story and felt like I knew him. I read that he had passed away while I was in the hospital waiting on my surgery. I felt like my personal champion had been lost, because he had made it his mission to find a cure. I am so happy that his family has continued his mission. I am thankful to have the opportunity to share my story so that others can know they are not alone and hope to one day have played a part in finding a cure!
Kayte’s story continued with a trip to India Summer 2012 for an experimental combined liver transplant and bone marrow transplant. That journey is chronicled at www.cure4kayte.com. Sadly Kayte passed away September 16, 2012.