Tucker was the founder of FCF. Below is his fibrolamellar story, written by his mother, Marna
August 26, 2008: After having spent a summer periodically not feeling well, Tucker presented with a swollen right leg. He could barely walk. His doctor, Ron Levine, immediately checked him into Greenwich Hospital where doctors scanned Tucker and found a huge blood clot going from his right foot, up the vein, to just beneath Tucker’s kidney. The scan also showed a large tumor on Tucker’s liver. The clot was the result of a tumor producing so much protein that it started to clot. Tucker immediately underwent surgery to put in a filter which would keep the clot from continuing any higher in Tucker’s body and keep pieces of the clot from breaking off and travelling elsewhere. After a couple of days of tests, doctors at Greenwich Hospital believed Tucker had fibrolamellar hepatocellular carcinoma. They had never seen it before, but had heard about it. Tucker’s scans were sent to Memorial Sloan Kettering in NYC where doctors thought they might have a surgical way forward for Tucker. He was therefore transferred to MSK.
September 2, 2008: Tucker underwent biopsy surgery to determine if he had regular hepatocellular carcinoma or the variant called fibrolamellar hepatocellular carcinoma. It proved to be the latter. A laparoscopic biopsy was requested by Tucker’s family rather than a needle biopsy so they would have tissue to send to various labs for testing. Tucker needed a week to recover from the biopsy before resection surgery could be performed.
September 9, 2008: Tucker underwent resection surgery with Dr. Ron DeMatteo at MSK. The operation took over 4 hours, after which, Dr. DeMatteo said that he had removed everything that he could see. He did say that he knew there was more cancer there, but that we had definitely “reset the clock”. We had more time to find a cure for Tucker. From this surgery, Tucker’s cancer cells went to various labs around the country. Some of these cells were implanted in mice (xenograft) and some were cultured in petri dishes to test against various chemotherapies. These tests were funded by Tucker’s family.
Tucker now needed to recover from his slowly decreasing blood clot (something the body takes care of on its own once the patient is on blood thinning medicine). So he slowly recovered from the clot AND from the resection surgery.
September 18, 2008: Tucker went home! It was GREAT.
September 28, 2008: A panel of liver cancer specialists (oncologists, surgeons, radiologists, pharmaceuticals) gathered in New York City to discuss Tucker’s case. These doctors had come from all over the country. The panel was led by Dr. David Sidransky of Johns Hopkins University. Tucker’s case was discussed, his scans reviewed, and the panel came to a consensus of how to go forward. (The Davis family has a transcript of this panel.) It was recommended that when Tucker was sufficiently recovered from his surgery, he start on the drug Nexavar.
October 2008: Tucker started Nexavar. He experienced some side effects: a rash all over his body and fatigue, nausea, headaches. The dose was decreased. The doctors were quick to tell us this was all from the drugs, not the disease. Tucker went on and off Nexavar as side effects presented themselves and then went away. We were told it often happens that a patient starts a chemo medication, has side effects and the meds are stopped. Meds are usually restarted when the side effects go away, and often the side effects at that point are not as strong.
November 25, 2008: Tucker’s latest scan showed continued growth of the cancer. MSK recommended adding doxyrubicin to the nexavar. Doxy is a tough chemo drug but Tucker said to “bring it on”. So the day after Thanksgiving, Tucker trundled into MSK in NYC with his friends and cousins for the new chemo regimen. Tucker handled the Doxy. He was told he would lose all his hair, but he actually kept some; a hat was still in order though. Tucker favored the woven cowboy hat that his friends got him in Turks and Caicos at New Years.
December 2008: Tucker got a MUGA scan to check his heart as Doxyrubicin can affect the heart. His nausea was also increasing.
January 2009: New CT and PET scans showed continued growth.
NOTE ON SCANS: We learned that with CT scans it is important to get as many slices as possible. 64 slice CT is good. We learned that a 256 slice scan was coming out and even better. Older CT machines are 16 slice. It is also good to have the scans done on the same machine if possible, for comparison sake. Sometimes the CT scans cannot differentiate between a shrunken tumor which still shows mass, but is actually dead cells, and a tumor with no shrinkage. Reading CT scans is not a perfect science; it is an art for sure.
January 26, 2009: The Davis family had heard of another young man who had FHC and had gone through surgery and continued with a combination of five drugs…and was in remission! The panel reconvened by phone and, after much discussion, agreed to a modified version of the multi-drug plan for Tucker. This combination of drugs was never before tried and there was only one anecdotal case of its effectiveness. However, the panel agreed that it was worth a try if Tucker was up for it, which he was.
February 2009: Dr. DeMatteo surgically put in a Mediport for Tucker and he started the multi-drug regimen at MSK. It was suggested that he put in a dual mediport as then different meds could be administered at the same time. The plan: 5FU, Avastin, Oxaliplatin, Gemsitabin. Dosing and timing of administration was very important. In addition to these chemo drugs, Tucker was on numerous drugs to handle side effects. New side effects were blisters on his feet. Tucker loved to say, “It’s all about the comfort”. Well, slippers became a permanent addition to his wardrobe. Note that Tucker continued to be as active as possible during all this. Fishing trips with his friends to Florida. A winter camping trip in Vermont with cousins and friends…all timed for chemo treatments. At this time, we were also considering some interperitoneal therapy (washing Tucker’s abdominal cavity with chemo drugs) somewhere down the road (three or four months).
Spring 2009: Side effects increased. Liver functions varied. Neuropathy set in. This is the tingling and sometimes pain in the hands and feet. Tucker could not touch anything cold, often wore gloves and we even hung mittens outside the fridge to remind him not to go there! The good news, Tucker did NOT have other side effects: no rash, no fever, no diarrhea, no urinary issues, no mouth sores (ever), and no loss of appetite.
March 2009: Tucker looked good and gained weight. He had some headaches, but not too bad.
April 2009: Tucker was rescanned and his doctors found NO NEW GROWTH! The doctors informed us that the spring 2009 meds had brought Tucker’s fast-moving cancer to a slower growing one.
May 2009: Tucker’s non-MSK doctors recommended that Tucker’s dose be increased to be identical with the patient in remission. MSK doctors, who had been administering Tucker’s chemo to this point, did not agree and they had good reasons. Certain of the drugs in this multi-drug regimen could only be tolerated for a certain period of time. By increasing the dose, we were shortening the length of time Tucker could be on that regimen. Others countered that a stronger dose had put the other FHC patient into remission. Tucker and his family decided to go with the stronger dose. The 5FU was changed to Xeloda. This was administered at Greenwich Hospital. As Greenwich Hospital was so close to the Davis home, they chose this so his local doctors could handle any side effects, which they did…rather than always heading into NYC with these issues. MSK offered any help they could. Eventually, Thalidimide and Tarceva were also added.
July 2009: Tucker had a major reaction to the drugs: rash on face, increasing temperatures, nose bleeds, more nausea, drop in weight, constipation with diarrhea, back pain, platelet drop. He was taken off of all drugs except his Fragmin (for the blood clot). He was put on Avelox (antibiotic) and Tylenol. The neuropathy was much more pronounced (note that Oxaliplatin has a cumulative effect). Blood counts were carefully monitored and Tucker was on Neupogen or Newlasta to handle these. Dosages were changed constantly due to side effects.
End July 2009: Tucker’s platelets dropped and became a problem. His hemoglobin was low. He was put on Procrit 2x/week and given blood transfusions. (Note: Procrit is “epo,” the drug that professional bicylcists have been accused of taking.) The good news was that the red blood cells and oxygen in his blood went up, but this made Tucker more prone to strokes and clots. Tucker’s local doctors again noted this was all due to the chemo, not the cancer. “Tucker had a boatload of treatment and he tolerated it well, but they (the chemo drugs) do take their toll”.
August 2009: A new CT scan showed no change from the last one. It also showed some spots in the abdominal wall. All his organs looked good. (Note – cancer becomes most deadly when it finds its way to the major organs of the body.)
August 14, 2009 : Tucker was still feeling abdominal pain, napping a lot, and on iron supplements. Neuropathy was still an issue but he was not sore.
September 9, 2009: Scans showed that Tucker had a growth at the bottom of his spine. He underwent a second surgery to again “reset the clock”. Note there was a difference of opinion amongst the doctors at MSK as to whether Tucker could afford the time off from chemo for the surgery. It was mentioned that most likely Tucker’s cancer was stunned, but as we got away from treatment, his cancer growth could take off again. (Tucker had to have all chemo drugs out of his system before the surgery AND could not go back on chemo for four to eight weeks after the surgery. Again, a good point, but Tucker wanted to “reset the clock” and obtain more tissue for research). A surgery that was to take four to five hours was over in one and a half hours. Tucker’s doctor said that there was too much scar tissue from his previous surgery to continue towards the growth at the bottom of his spine (many difficult complications could have arisen which would have very adversely effected the quality of Tucker’s life). Also, Dr. DeMatteo found lots of cancer all through Tucker’s abdomen. Tissue from this surgery was sent to Dr. VonHoff at TGen (Carys Diagnostics) in Phoenix, AZ; Dr. Larry Weisenthal at UCLA; Paul Michelle at UCLA; and Presicion Therapeutics for oncogene testing.
Recovery from this surgery was a bit more difficult for Tucker as his immune system was much compromised from chemo.
September 16, 2009: Tucker returned home. Once home, Tucker’s incision became infected. Alisha and Marna became very good at cleaning the wound, under the wonderful guidance of the Visiting Nurse Association.
Fall 2009: Tucker was on and off (mostly off) chemo, and in and out of hospital for side effects.
November 2009: Tucker was still doing pretty well until Thanksgiving.
December 2009: Tucker was very weak from chemo. He was having difficulty breathing, and his leg pains had returned (new clot in his leg). Tucker did feel well enough to head to Florida with the family. It was a great visit as he loved his family’s home in the Florida Keys. Every morning, he and Alisha took a hot tub and one day he made it onto the steps of the pool and fell in. We were aghast but he came up laughing! But he had to return home early due to breathing problems.
January 2010: Tucker was having trouble breathing as there was so much fluid in his abdomen. He was on oxygen. Also, Tucker’s appetite had decreased and intravenous nutrition was started.
February 23, 2010: Fluid from Tucker’s abdomen was removed at Greenwich Hospital (a process called paracentisis). Tucker felt much better afterwards and this fluid (ascites) was air-lifted to UNC-Chapel Hill, Johns Hopkins and British Columbia Cancer Center for testing.
February 28, 2010: Tucker continued to weaken and finally passed away…surrounded by family, friends, music, and love.