Welcome Message From Our Founder
Our team at FibroFighters is deeply sorry that you require this website. We strive every day to make its existence obsolete by continuing our dedication to finding and utilizing better treatments while helping researchers as they work diligently to find a cure. With the recent addition of our new Medical Director, Dr. Paul Kent, we are helping to advocate for each patient at an elevated level when patients or caregivers request our assistance by speaking with their medical teams directly. By educating patients and working in collaboration with their medical teams, we are hoping to find better treatment options on a timelier basis. We invite you to utilize our International Tumor Board where patients can have their cases presented by their home-based medical team for review by our panel of FLC experts. A consensus is reached, and a report is prepared and shared with the primary team. The feedback has been exceptionally positive in the four months since launching the program.
Unfortunately, our family is all too familiar with the emotions that you and your family may be experiencing since your Fibrolamellar diagnosis. Eight years ago, Carrie and I faced a parent’s worst nightmare when hearing the words your 18-year-old son has stage four Fibrolamellar Hepatocellular Carcinoma. (Read Robert’s Story below.) Any cancer diagnosis is devastating; however, with Fibrolamellar being an exceptionally rare cancer, the challenge became far more momentous due to the lack of general knowledge and understanding among clinicians. Our minds raced, and we did not know exactly what the first steps should be. We learned the majority of our Fibrolamellar knowledge by trial and error, and we always felt like valuable time was slipping away; in hindsight, we wished we had a central resource to help guide us and function as our virtual advocate. We found a few helpful resources like “The Fibrolamellar of the World Unite” Facebook page however, we often needed more specific answers and the ability to quickly navigate the concern of the day in the most expedient manner. In addition, Carrie feared reading some of the harsh realities of our cancer and often shied away from social media and the web.
Our Fibro Library and resource section (currently under development) will offer topics most pertinent to our patient base written in easy-to-understand terms, providing document links, and short videos to help provide clarity. You can then share these with your medical team for discussion as how they may apply to your specific case. If reading is not your preference and time is of the essence, we recommend you reach out directly and speak with Dr. Kent or me. Speaking with Dr. Kent directly provides you the benefit of his 25-year pediatric oncology background, and specifically over the past five years participated in the care of over 135 FLC patients. When speaking with me, I can help provide balance and support since being in the trenches for many years and understanding the numerous challenges our cancer presents. I can fill the gaps that often exist between medical teams and the families. I play a neutral role in helping you evaluate the best possible decisions, finding the best clinicians for your specific needs, speak to the pros and cons of various trials or offer the latest information of what we know is and is not working effectively in the various clinic. I cannot stress enough the fact that each patient is unique, and one size does not fit all.
In closing, we encourage you to set up a call or zoom meeting with Dr. Kent or myself. You can also reach out to one of our patient or caregiver advocates to obtain more information regarding your concerns. We are on Facebook, Instagram and Slack, and we are adding new material to our YouTube channel regularly.
FibroFighters strongly believes in the adage “knowledge is power,” and our team remains committed to sharing this knowledge in hopes it will shorten your learning curve and allow you to ask better questions and to communicate more effectively with your medical teams. FibroFighters believes we have programs and important tools to help support you during your quest for a personal cure.
Now let us begin to “Slay this Fibrolamellar Beast Together”
Tom, Executive Director of FibroFighters Foundation
Pictured: Tom Stockwell, FibroFighters Founder.
Pictured: Founder Tom Stockwell with his FibroFighters license.
Pictured: Founder Tom Stockwell’s daughters, Laura and Sara.
Our Approach – Advocacy Services
FibroFighters Advocacy Services
FibroFighters believes our community is stronger when we are united. Our goal is to encourage collaboration regarding the best patient care options, educating all who are willing to learn about FLC, supporting research projects, and keeping an open mind when discussing new paths forward.
Below we outline steps we have found to be most effective regarding FLC care planning providing multiple tools for a better opportunity to defeat, slow down and manage your Fibrolamellar diagnosis. We use CLIA approved labs so they may legally report results to your medical team and insurance companies, providing you with the greatest number of treatment options.
FLC Care Planning Steps
Step One Please reach out to discuss your case with Dr. Kent and myself and allow us the opportunity to review your situation. We provide this service at no charge, and we do not support any one institution and work with your local medical teams wherever they may be located. We have found over 80% of the new clinicians we are meeting in tumor board are pleased and supportive to have the additional help. The question we ask ourselves is why wouldn’t this be 100%?
Pictured: Lead Patient Navigator Joy Funkhouser with daughter and patient advocate, Lacey White, together with Tom Stockwell and Carrie Stockwell.
Step Two Sign up for the xCures platform this allow us the ability to discuss your case in our international tumor board and provides you with a detailed view of all your medical records assembled in one location displayed clearly on a one-page timeline.
Step Three If your tumor has already been resected and you have tumor tissue stored at a pathology department, we would recommend having it sent to BostonGene for a complete analysis. BostonGene (CLIA Certified Lab) offers a deep dive into your tumor microenvironment, provides mutational studies, and offers the most relevant clinical trial information. We have found this test to be more comprehensive than Foundation One, Caris, or Tempus however these can still be useful to varying degrees to help guide your care.
Step Four Schedule your case for tumor board discussion among our panel of FLC experts and Dr. Kent will always invite your doctor and medical team to present your case. A consensus is reached after 15-30 minutes of having a detailed discussion including imaging review and a written report is sent to your medical team the same day detailing recommended next steps.
Step Five If your medical team is in agreement with the consensus the plan is implemented and FibroFighters will follow your care plan and hold additional tumor boards on your behalf if required. We remain committed and available to advocate for your care.
Step Six Have Dr. Kent order Signatera testing from Natera (CLIA Lab) to monitor level of disease in-between scans to determine how effective your therapy may or may not be and determine if a correlation exists between scan results and your Signatera lab results. A paper is currently in process to highlight its accuracy. If this correlation exists for you, this can be a useful marker for detecting level of disease.
Step Seven If your medical team determines a resection would be in your best interest consider providing a tissue sample to the Nagourney Cancer Institute (CLIA Lab) for functional tumor profiling utilizing a customized FLC drug assay. We have recently begun using core biopsies for assay testing however they do not yield nearly as many drugs. In addition, if you are experiencing ascites build up in your abdominal cavity or pleural/lung area this fluid provides an excellent source for testing.
Step Eight Continue to monitor your case with the tools outlined in the previous steps and we invite you to join our patient or caregiver zoom discussions and our dedicated patient slack group to help answer questions, establish bonds and friendships with other patients and caregivers.
Our Goals and Objectives
Advocacy & Community Support
- Offer free, confidenital, and personal discussion (call or Zoom) with our Medical Director Dr. Kent to review your case.
- Advise patients on finding best treatments, medical team, and clinical trials for FLC.
- Update our community on results from current research projects and share their meaning and practical application and how they may eventually influence the patient’s care.
- Provide monthly patient and caregiver discussion groups, with topics relevent to each group. Our amazing group of patient and caregiver advocates understand the challenges you are facing and want to assist you in finding the best path forward while reducing the learning curve associated with our rare cancer.
- Sponsor local fundraising events.
- Help FLC patients find the most cost-effective means of obtaining second or even third opinions.
- Leveraging programs available from our collaborators (xCures, the Nagourney Cancer Institute, BostonGene, Natera and Ko Discovery), including helping with insurance denials.
- Increase influence with private and public organizations to support the FibroFighters mission.
Research, Improved Treatments, Developing Concepts for Clinical Trials
- Improve Treatment options by collaborating with our associates at xCures, The Nagourney Cancer Institute and BostonGene.
- Develop Concepts for new drug trials and explore options using expanded access and N of 1 single patient trials utilizing programs from xCures.
- Fund key pilot projects for Fibrolamellar with the expressed purpose of pursuing new unexplored avenues which otherwise may be overlooked.
- Expand our Fibrolamellar Project at the Nagourney Cancer Institute by adding in key new drugs.
- Continue to work with Dr. Ko and her team at NewG labs to launch an FDA approved trial for FLC and HCC sometime between March-June 2023.
- Working with our collaborators, Dr. Kent and his team will publish multiple abstracts and papers gained from real world-evidence provided by the xINFORM platform at xCures. These papers will cover the most important topics like which treatments have been the most and least effective, side effects, and other relevant findings.
- Offer support to all types of Fibrolamellar research around the U.S. and the world. We support sharing your tissue samples with a variety of research centers based on the amount collected during your procedure. We believe NO single institution or organization should ever require you to submit all your tumor tissue to them. In other words, don’t put your valuable tissue into a single basket.
- Publish our Fibrolamellar Resource Library and add content on a regular basis. We promise to keep you updated on all the key developments, published papers, abstracts and most importantly how they do or don’t apply to your specific situation.
- Educate the medical community willing to learn and explore new treatments and procedures for their FLC patients. Dr. Kent will be presenting our work at key conferences and tap into the many young fellows looking to take on new and exciting projects.
- Offer personalized advocacy program educating patients and families one on one, via zooms, or calls
Pictured: Patient advocate Ethan Neumann
Our Motivation Behind FibroFighters
Robert Henry Stockwell was named after two of the strongest men I ever knew, my grandfathers. Little did Tom and I know how he would carry on the gift of their legacies. It was shortly after Robert graduated from high school when the monster of all nightmares reared its ugly head in the form of stage 4 liver cancer. Fibrolamellar Hepatocellular Carcinoma… an unpronounceable, extremely rare form of cancer for which there was no known cure. We were devastated, in shock and left the doctor’s office without a shred of hope or possible direction. The 3 hour ride home felt like time was standing still yet our world was spinning off of its axis at warp speed. Unbeknown to us, the “Gerd” and vomiting that started a few years before were early symptoms of this beast in its infancy. If only we knew then what we know now!
The very next day our family rallied. Our daughters, Sara and Laura, and I resorted to finding recipes and foods and juicing to fight cancer (as if that would help at this stage), Robert learned all he could about liver resections, studied the procedures and watched operations online, while Tom, doing what he does best, jumped into action, researching, calling cancer centers and doctors, making appointments, doing anything he could think of. It was unbelievable all the doctors we saw and procedures Robert had in the next few weeks. During this time we learned that his heart and lungs were also under attack. Robert was getting weaker and sicker by the time we ended up at our last resort, UCLA. One month to the day after diagnosis Robert was literally on his deathbed. By the grace of God and the power of the Universe he received a life-saving liver transplant and heart surgery at UCLA. If it weren’t for his dad Tom, whose tenacity, faith and positivity ultimately found two surgeons who took a chance and defied all odds and brought in their teams on President’s Day holiday we would have lost Robert that day. Clearly his time on Earth wasn’t up quite yet. He spent 4 long weeks in the hospital with his sisters, Sara and Laura, Tom and me by his side. We took residence either in his room or various close-by hotels.
The next three years were not spent at College as planned. Instead, there were countless trips to Los Angeles for doctor appointments, scans, treatments, another major heart surgery, 2 spinal surgeries, just to name a few of his many surgeries and procedures, etc. In the midst of fighting for his life, Robert continued learning, loving, sharing and keeping his wonderful sense of humor. Robert was a natural in the technology arena; it is there where he was in his element. He taught himself video editing and web design (no easy task), started his own Tech business and created multiple web sites that are still in use today. The two projects Robert was the most proud of were creating the Facebook page for UCLA transplant patients and the survey tool that he and his Dad created for fellow Fibro-fighters, where patients could pool their health results to see what was working and what was not. It wasn’t so much of a project but more of an honor, just as it was to become an ordained minister, so he could officiate at his sister Laura’s wedding to Ryan.
Volunteering at Ronald Reagan Medical Center at UCLA was extremely important to both Robert and the medical team; they formed a very close bond during his hospital stay. We lived far from UCLA so he would do his “rounds” on the days we were there for appointments, before or after chemo treatments. He would talk with, encourage or just listen to the transplant patients. He was exhausted but it fulfilled him, he had to do it, nothing could keep him away. After every visit he would say to me, “Mom, they say that I am helping them but I think they’re helping me… I don’t know who’s helping who. These people are incredible.” Robert had an ache for the homeless and hungry, which deepened after his transplant. It could be because his liver donor was such an activist for the needy and volunteered much of his time as a missionary. Every trip to L.A., Robert made sure he was fortified with gift cards to Subway or had some cash to give to those less fortunate than he. He was so grateful to have a home, food to eat and a family who loved and supported him. He was also thankful to be in a position to help others who were less fortunate.
Robert was positive, kept trying and kept fighting. He did his best and then some. How he did it was truly amazing and reminds me of a quote from Martin Luther King Jr. “We must accept finite disappointment, but we must never lose infinite hope”. I don’t mean to make it sound like he was jolly all the time and it was no big deal, that cancer didn’t affect him … to the contrary it did upset him, he felt tortured and some days were downright hard, there were definitely dark times. He received more bad news than good on a consistent basis. Disappointment was not only hearing the news, but the way it was delivered. Often times it sounded like there was no hope when in actuality there were options, but many Oncologists are limited by institute policy, desire, time, ego, a closed mind. SO disturbing! Frustration would take its toll but Robert always came back around and made it a new day, with hope for a cure and strength to keep playing “whack-a-mole”. Cancer didn’t define Robert, it magnified who he was, and true to his namesake became one of the strongest men I will ever know. I think this is what Robert would say to his fellow fighters:
- Don’t give up
- Don’t lose hope
- Don’t or be satisfied with nay-sayers, challenge their opinions
- Doctors are human — they cannot possibly know it all (although some may argue otherwise)
- Keep playing Whack-a-mole
- Let’s slay the fibrolamellar beast together
Robert tidbits: Signature delicious dishes: garlic mashed potatoes, sautéed spinach, banana bread, chocolate chip cookies. Favorite holiday was Thanksgiving. The sound of children playing, laughing, squealing melted his heart. Excellent driver and navigator. Did NOT like roller coasters. Funny and talented impersonator. Excellent teacher taught himself how to play the piano. Even as a little boy, wise beyond his years. Dodger fan and got to meet his favorite player, Joc Pederson. Wanted to attend and graduate from UCLA. As he got weaker, he enjoyed watching “I Love Lucy,” The Golden Girls”, “Three’s Company”, “Friends”, “Two and Half Men” and “Fixer Upper”.
– Carrie (Robert’s Mom)