This winter and throughout last year we an inordinate amount of suffering in the fibrolamellar community. It has been unimaginably hard for so many parents, partners, caregivers, siblings, and children. It’s hard for your doctors also. It can leave many to wonder, is there any reason for hope? I am here to remind you, and even myself, that there is indeed cause for hope, based in facts.

FibroFighters has now seen 186 different patients from twenty-seven countries. The survival of our patients is higher in this group than previously published data, especially for stage IV patients. Our stage IV patients already have far surpassed the best published results of other stage IV FLC patients. We have the largest cohort of FLC patients EVER to receive the same therapy (GEMOX+Lenvatinib) with and average 135% reduction in tumors! Even more, over half of patients who were told by clinicians they “could never have surgery” went on to get surgery and are in remission. We had 44 patients come to us on hospice or palliative care who were told ‘there is nothing more we can do” and now more than two-thirds are alive 2.5 years later. That is cause for celebration!   

FibroFighters has seen first hand through our incredible patients that many of the assumptions we have been told about FLC are wrong.

  • There IS systemic therapy that works.  
  • FLC IS sensitive to radiation.  
  • You CAN live a long time and sometimes be cured EVEN WITHOUT SURGERY.  
  • Most of the “unresectable” patients actually CAN be resected with appropriate multidisciplinary care.  
  • Surgery alone IS NOT enough, with the rare exception of some stage 1 patients. 
  • Surgery up front is not the best option for most patients.  
  • And anyone, of any stage, no matter how much disease CAN BE TREATED AND SURVIVE.  

We have shown that NO CASE is hopeless. There is scientific reason for this hope. And there is a lot to look forward to after as well. We have (at least!) 27 children that have been born to patients with FLC and even a grandchild. There have been (at least) 10 weddings, many graduations, and many more birthdays and holidays celebrated by FLC fighters. Often many more than they were originally told they could expect. Our community of patients, partners, caregivers are strong and support one another.

I look at the pictures of patients we serve and see amazing young people: authors, softball stars, division 1 basketball, skiers, triathlon athletes, marathon runners, bicyclists, boxers, an MMA fighters and even an Olympic athlete, next to military hero’s, PhD students, MD students, many computer whizzes, tons of geeks (yeah!! Go geeks!!), FLC and political activists, musicians, singers, beautiful brave children, sisters, daughters, sons, friends. All with many years of life left to live.

That is true hope. You can do this. There is a path forward. You are not alone.

Love to all in the Fibrolamellar community,

Dr. Kent