HELLO to all the CC patients and caregivers

I am the caregiver for my husband, David,who has Stage 4 CC now. He is 63 years old.
He had PSC which ruined his last liver and was fortunate enough to find a live donor non-related to give him a new liver in 2003. It was one of the last live liver donor transplants done at UCLA. His surgeon was Ron Busuttil. I did not know David then. I met him in 2009 and he was doing well. Then in the beginning of 2013 he started to have problems with itching, simultaneous chills and sweats, and occasional fevers. He said he remembered having this before his transplant.

The doctors at UCLA did every test in order, abdominal ultrasound, MRI, MRCP, CT, but no PET/CT. and a liver biopsy. Everything came back negative. No PSC, no cancer, well functioning liver. These bouts of itching, chills and sweats would come and go. His Bili got up to 1.6 but then went back down. Finally in August, 2014 he had an ERCP just to make triple sure there was nothing wrong. He had been on antibiotics for about 3 months then and now the itching, simultaneous chills and sweats were constant and his quality of life was rotten.

The interventional endoscopy doctor saw David before the procedure and said he was sure they would not find anything. Well, they found a tumor in the middle of his bile duct. They did a second ERCP to take a biopsy of it and at the same time they took as much as they could of it.

The relief to David was immediate. The sample came back suspicious for CC, but he was feeling good again. because the bile was getting out. The tumor was in the distal portion of the bile duct and surgery was recommended. Dr. Busuttil felt he could do a simple resection and get rid of it. It was slow growing he felt.

We went out to City of Hope for a 2nd opinion, Dr. Yu, Chief of Surgery, and he told us to have it taken out too. A Whipple was discussed but felt it would not be needed .

In October 2014, David had the surgery and although they were able to get all the CC in the bile duct and the margins were clear, the cancer had spread to the omentum. They found this accidentally. While waiting for an OK from the path lab for clear margins, they just took a look around and found these very tiny nodules in his omentum. One lymph node was affected too. They took out everything they found, but they recommended chemo and radiation. They said David would maybe have a year to live. We were angry that they had not ordered the ERCP a year earlier which might have caught the tumor before it had spread.! We have the top doctors at UCLA and still they missed doing the one test they should have. The hematologist apologized. Too little too late.

Two radiologists at UCLA and City of Hope told us that David could not have radiation because the area was so large. He would be literally burned up. We saw two oncologists and didn;t like either one of them. David had already decided that he did not want chemo. He didn’t want to be a “Professional patient” He just wanted to live out the rest of his life on his terms. He was feeling well and we wanted to travel.

The oncologists wanted to use cisplatin and gemcidabine on him which would have made him sick. They told him they did not think they could give him a full dose because he was a transplant patient. Ditto with any clinical trials. They would not do anything but the gem/cis regimen which we learned from the American Cancer Society was not effective for CC. There has not been much research on CC, as you all probably know, so they really wanted David. ))

We started researching alternative therapies and found CBD (cannabinoid oil) which is the medicinal part of the marijuana plant. There is a doctor here in LA, Dr. Alan Frankel, who has been using it for 9 years. He is an internal medicine Doctor who got tired of prescribing all the narcotics for his patients and thought there was a better way. We met with him and he honestly said he had never had a CC patient specifically. Other abdominal cancers though. He said that if David want to try the CBD capsules, he would give him a prescription for them and calibrate his dose. He said that they might not help the tumors, but it would not hurt him at all, and that David would feel a whole lot better. It might also help to shrink his tumors. He would monitor the results through a PET/CT and his CA-19-9 which at that point was about 115. It would take at least 3 months to see any change. we started the therapy in December, 2014.

In January, 2015 David turned yellow and was itching with chills and sweats again. blood test showed his Bili to be 8.1 Yikes. Turned out he had a stricture in the common bile duct where they did the anastomosis (joined the two ends of the bile duct together after having removed the portion with the tumor) A common complication of the surgery. Nothing to to do with CC. They had left a pediatric stent in which obviously lasted only 2 months or so. Geez. We were told that he would have to have a TPC (transhepatic percutaneous cholangiogram ) to find out where the stricture was and to put in a catheter with an internal/external biliary drain .

He had his first catheter put in February 5th. His Bili came down to 3.9 and then while flushing the drain he broke it! He is now on his 6th drain change. They either stop dead after 3-4 weeks, or he pulls them and they leak. They are really not meant to be in that long with the drainage bag attached. The Interventional Radiologist (IR) wants it capped, but the liver docs do not want to cap it until the Bili comes back to normal. So David has had the drainage bag we have named Sam for almost 5 months now. We travel with him all over the country. He started out with a size French 10 and is now at a French 14 which is the largest. It is a 6 month process so he should be able to have it removed in August.

New problem is that his Bilirubin never went down further than the 3.9 and is now up to 12.1
No one knows why. He has mild itching, but not much.No chills, sweats, pain, fever, nausea. He feels very good, but there is something very wrong. He is very jaundiced.

He had a PET/CT in May which showed NO CANCER AT ALL anywhere in the abdomen. But his CA-19-9 was up to 578. We sent the results to Dr. Frankel who was thrilled with the results and said not to worry about the increase in CA-19 because he has seen it too many times that when cancer cells die they also produce energy. He predicted it would go up more and then come down. We were cautiously optimistic.

We told this to the hepatologists and they laughed. But then they think CBD therapy a joke. Too bad the medical community is so wedded to the traditional forms of treatment. They think pot is only good for nausea!

Unfortunately, David’s Bili has continued to rise to 12.1 now. His Ca-19 is up to 1250. He just had an MRCP yesterday to find out the cause of the blockage. He may still have PSC, so it would not be unusual. I just hope the test finds something that can be corrected. This last week we had family in town and he rode the rides at Universal Studios, went to a Dodger game, and another amusement park. He was on the go from morning until night. He just looks yellow.

Now we wait for the results of the MRCP and pray.

Thanks for reading. I will now read some of your posts which may lead me to have some actual questions.!! Please feel free to comment or ask me any questions you like.