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DAVID'S STORY AND MEDICAL HISTORY 


David Bibey is our youngest son and we love him very much. We live in Melbourne Florida and David was away at collage. On October 28, 2003, we were notified by the Tallahassee police that he had been transported by ambulance to Tallahassee Memorial Hospital. He was very confused, disoriented and slightly dehydrated. Because of this disorientation he had very few memories of the previous three days. The cause of the disorientation was not really investigated or determined at the hospital because of what was found during a Cat Scan. (SEE BELOW) Our experience since this incident leads us to believe that David's ammonia levels in his blood had elevated to a dangerous level and his liver was not working well enough to keep it in check. We experienced this first hand when David started chemo for the first time in November of 2003.

Once we had brought David back to Melbourne, we located a local oncologist, (the best in the area). He then recommended that we make a trip to any one of the Cancer Research Centers for a more detailed diagnosis. He had never seen this type of liver cancer and really did not know what chemicals or treatment to proceed with. He would provide the referral and we picked Moffitt Cancer Research Center in Tampa Florida and made an appointment. At Moffitt, David's cancer was properly diagnosed as FHC (Fibrolamellar Hepatocellular Carcinoma) and his Dr. prescribed the chemotherapy regime that David was on for a year. This 4 drug therapy was tested in a clinical trial on liver cancer patients that had unresectable liver tumors and had a good degree of success in extending the life of the patients.

Remember the liver is a big filter and one of the jobs it does is to tag the ammonia in the blood so the kidney's will remove it and allow it to pass as urine from the body, maintaining normal ammonia levels of between 25 and 45. When the ammonia levels rise in the blood to higher than normal levels, the first indication is the disorientation David experienced. As they get higher, a state similar to dementia sets in, and then coma. We saw this happen with David in November 2003 when his ammonia level went to the high 300's. At this point the Dr's advised us that this was a sign that David's liver was shutting down and to be prepared for him not to leave the hospital. The final stage of very high sustained ammonia levels in the blood (1000 to 1600) is death. The brain can not or stops controlling the other organs in the body and they begin to shutdown. David was discharged 12 days later (ammonia levels normal) and all his Dr's could say was there goes a miracle -

FHC is a very rare form of liver cancer and has a twist. It mostly occurs in the young, ages 10 to 25, and does not have any of the same causes as other forms of liver cancer. Unlike other liver cancers it will also readily travel (or metastasis) to other parts of the body.

At the time of David's diagnosis (October 2003) he was considered a stage 4 cancer patient. Stage 4 is the last stage. His liver had started to fail, he was retaining fluid in his abdomen area (another sign the liver is not working correctly), and of course the incident with the ammonia levels in his blood. He had also lost a lot of weight (6'4" 250 lbs. down to 155 lbs. in about 6 months). David's prescribed therapy was the 4 assigned drugs (everyday) for 4 days then 21 days off. During his first chemo session (November 2003) David was in a coma for 12 days - Once his ammonia levels returned to almost normal, he woke up as if nothing had happened and seemed OK - The second session in December was just as scary for all of us to begin with, but David had no ill effects like the first session, and was out of the hospital in 4 days. Because of his success during session 2, David's third session was done as out patient therapy. He stopped retaining fluid and no longer required the periodic paracentesis (the removal of said fluid from the abdomen cavity)

Since David's diagnosis he has gone through the 4 drug chemo suggested at Moffitt for a year, about 4 months of a different drug, took some time off, and in April 2005, had a Chemoembolization of his liver tumor - To date, June 2005, he has put about 40 of his lost lbs. back on and feels pretty good - He will start on a new drug trial at Moffitt in July of 2005 - Check the Daily Log for updates - UPDATE - David started and finish Phase I of the trail at Moffitt (in Tampa Florida) and was gone for 2 months returning to Melbourne in early September 2005 - He did very well in Phase I - He resumed that same treatment (Phase II) here in Melbourne in October 2005 when the trouble started - David made it through another 4 week of drug infusions before slipping into (yet another) ammonia induced, coma like state, on December 3rd of 2005 - He never woke up from it this time, (like he had before), and past away quietly in the early morning on December 10th from liver or liver related failure - See the last entry of the Daily Log



Below is the report from David's doctor in Tallahassee on October 29, 2003.


David Bibey is a 23 year old white male. He was transported to the emergency room when his roommate noted confusion and weakness and strange behavior that persisted for three days. He was found to have a distended abdomen and a CT scan in the emergency room showed peritoneal carcinomatosis with multiple large peritoneal tumors as well as large liver metastasis. CT scan of the brain without contrast was unremarkable. A CT of the chest was unremarkable except for a small left lower lobe nodule. There have been no gastrointestinal symptoms of bleeding, constipation or vomiting. No hematuria. No pulmonary symptoms.

PAST MEDICAL HISTORY: Unremarkable

MEDICATIONS: He was on no prescription medications.

SOCIAL HISTORY: He occasionally drinks alcohol and smokes cigarettes.

FAMILY HISTORY: Father has diabetes. Otherwise no history of cancer in the immediate family.

ADMISSION LABORATORIES: Hemoglobin 13, hematocrit 40%, platelets 503,000, MCV 81, white count 9,8000, normal differential. CMP normal except for alburnin 2.8, SGOT 91, SGPT 139. Urinalysis: Positive Ictotest: 2+ for protein and 2+ for ketones: 2-5 red cells and no white cells seen.

X-RAY STUDIES: As described above.

PHYSICAL EXAMINATION: somewhat cachectic 23 year old male, 6'4” 179 pounds. He is not jaundiced. He looks a bit sallow perhaps. HEENT: No scleral icterus. LUNGS: Clear. HEART: Normal . ABDOMEN: Distended. No clearly palpable masses. Perhaps a palpable left lobe of the liver in the epigastric region which is a little tender. EXTREMITIES: Without edema.

ASSESSMENT: Metastatic cancer from an uncertain primary site. I am also concerned possibly about subtle brain metastasis that did not show up on the non-contrasted head CT scan.

PLANS: Will get an MRI of the brain with contrast. He needs a biopsy of either a liver lesion or one of these abdominal masses. I would prefer that he also go ahead and get upper and lower endoscopy, looking for possible site of primary tumor. Discussed with the patient as well as his parents this evening.



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