Diagnosed in July 2014 at 31 years old
Lives in Massachusetts
Patrick was diagnosed just after he completed his first year back at college (after a long hiatus away). His excitement of making the dean’s list all year was overshadowed by gradually worsening GI symptoms, frequent right shoulder pain and an unexplained and drastic weight loss over a period of about six months. After a kayaking trip he developed severe abdominal pain leading him to seek medical help. Before we knew it, he was having a battery of tests including a CT scan, liver biopsy and eventually we received the diagnosis of Stage IV Fibrolamellar Carcinoma on July 8, 2014 (a day none of us will ever forget) from Dr. Olga Kozyreva at Dana Farber. Patrick’s family and close friends bonded together to provide him (and each other) with lots of love and support and Patrick soon nicknamed us “Team PatrickStrong” (in the spirit of “Boston Strong”).
Patrick’s tumor was reportedly too large and widespread for a surgical procedure, which was very upsetting given the information we found. Although the odds were not as good as one would hope, given no other choice Patrick had a port inserted and started receiving chemotherapy. Patrick experienced some strange side effects just days after his very first chemo; he had excessive vomiting and lethargy with confusion, leading to a trip to the ED. His ammonia was up, and assuming liver cancer means liver failure he was given lactulose and recovered fine. However this continued and got progressively worse with each treatment, eventually he was in a coma for two days. Dr. Inderneel Sahai, a pediatric specialist at Mass General Hospital recognized this as a urea cycle disorder, a condition that is typically an inborn error of metabolism. The nasty fibro tumor was hitting him with a one-two punch; it was creating a deficiency in ornithine, one of the essential amino acids required for metabolism of ammonia – and, at the same time the tumor would express excessive amounts of ammonia. Fortunately it was caught, and they prescribed specialty medications (Ravicti and compounded Citrulline) that allowed him to continue chemo ….that is, until he developed an anaphylactic reaction to the Oxaliplatin two months later!
With chemo no longer an option we vetted several surgeons …but were once again hitting roadblocks MGH. Jennifer Strickland, a fibrolamellar survivor (whom we’d met at the 2014 gathering) reached out to her hero, Dr. Roger Jenkins…an extremely gifted liver transplant surgeon in the greater Boston area who had saved her life twenty years ago. Thanks to Jennifer’s referral he agreed to see Patrick. On December 24, 2014 he gave us the best Christmas present ever – he informed us he was able to do Patrick’s surgery! On January 14, 2015 after 10 1/2 hours in the OR, the surgical team removed ¾ of Patrick’s liver, a 28x14x18cm fibrolamellar tumor, multiple lymph nodes throughout his peritoneum, and everything else that they could visualize. Patrick’s first post-op scan months later showed no evidence of disease! While we were obviously jubilant in this success, we were very aware the surgery was not curative and his cancer could return at any time. Ann-Marie (Pat’s mother) had been collaborating with Howard Simons, a very well-informed and helpful patient advocate. Howard was able to facilitate a treatment for Patrick known as “cell therapy by donor lymphocyte infusions” (DLI) post allogeneic stem cell transplantation, and non-myeloablative stem cell transplantation (NST). Patrick, Ann-Marie and Patrick’s aunt Rosemary traveled to Tel Aviv, Israel in April 2015 to meet up with Howard and Tal Friedman, a fibro survivor who had a very similar treatment years earlier which led to a cure. Ann-Marie donated her lymphocytes and then Patrick received nine straight days of treatment. To say this was a life-changing adventure would be an understatement; we went in awe to so many beautiful sites in the Holy Land.
Unfortunately the treatment was not successful and Patrick’s follow up scan that May showed a return of disease, diffuse small nodes. He was started on Xeloda and Interferon; but this caused his tumors to grow by 50%. As we searched for other options he got progressively sicker, very quickly. Eventually Dr. Kozyreva referred him to Dr. Andrew Zhu at Mass General for chemo desensitization. With this process he would be able to receive GemOx which (prior to his allergic reaction) had been proven to slow down the growth of the fibrolamellar. He spent almost the entire month of September 2015 at MGH while they stabilized him, began his chemo, placed a peritoneal drain for paracentesis, and inserted a PICC line for IV nutrition (TPN). After his discharge home we had to take things slowly and one day at a time; and never took one single moment for granted.
Patrick’s been receiving the same GemOx desensitization every two weeks and gets TPN every night for the past year. He started on Cannabis Oil in February. We’re blessed that he’s getting stronger yet know we need to still take things slowly and one day at a time. We never take even one second for granted. We are so grateful for every fibro-fighter, fibro survivor, fibro family and the foundation for sharing information, encouragement, love, strength, support and prayers.
Thank you for reading, Team PatrickStrong
We are Team Patrick Strong!!!