My adventure with colangiocarcinoma thus far

Hello. Like so many on here, I have had many adventures learning about this disease and trying to find treatment. I was living in upstate New York when it all began. I was 49 years old.

It started in November or December of 2014. I had a lot of itching of my scalp and other sensitive areas but no sign of any skin conditions. I had gone to urgent care for very bad sinus swelling and mentioned the itching. The doctor urged me to see my primary care physician, because that itching could be caused by liver problems. I was leaving shortly after for a week out of

the country, so I was given antihistamines to try to counter the itch, which became unbearable. As I became more itchy, I also became jaundiced and noticed my urine getting darker.

After I came home, I ended up going to the ER at Saratoga Hospital, and things moved pretty quickly thereafter. I had a CT scan, then, after consulting my gastroenterologist, I had an MRCP, followed by an endoscope, where they did a brushing, and inserted a plastic stent into the blockage in my bile duct. This was the first time the C-word was uttered.

I was officially diagnosed with a Klatskins tumor on February 4th, 2014 at Albany Medical Center (AMC). I had two biliary stents/drains installed, and also underwent an unsucessful resection/exploratory surgery. They had a very hard time getting the left stent installed. It ended up taking three separate attempts. When the doctor stopped me in the hall on a walk and said he
was not confident of more than a 50% chance of success, I wish I’d have stopped there and started doing a lot of research on hospitals and treatments first, but I was just trusting what the doctors there had to say. By the way, besides our initial consultation, that brief moment was one of the few discussions I had with that surgeon. After the surgery, I had an infection get into the blood and ended up in ICU on a ventilator. After finally leaving the hospital after three weeks, I was soon back
with another infection that had me in the hospital for another week. Both my surgeon and the oncologist that I saw at Albany

Med were very much gloom and doom. They advocated standard chemo and radiation and getting on the liver transplant list and hoping for the best. They estimated that would buy me six months to a year.

During this time, we were doing a lot of our own research, as we didn’t like the negative attitude or gloomy conclusions. The surgeon generally argued against everything we asked him about, or was very negative about it. Sitting at AMC, watching infomercials for Cancer Treatment Centers of America (CTCA) I decided to give them a call. But first I looked into MD Anderson in Houston and their pencil-beam radiation. They said they’d just do IMRT for me. That was my first introduction to the fact that insurance would dictate treatment as much as physicians.

After some more insurance wrangling, I set out for CTCA in Atlanta. What was initially meant to be a 3 day evaluation turned into at least 2 weeks. The end result was that that they decided it may be resectable but were afraid it might be too far into liver. Recommended standard chemo, but thought a liver transplant center should evaluate/do surgery. They installed a PowerPort and did one round of chemo with Gemcitabine and cisplatin. This was the first actual treatment since diagnosis in February.

They were not a lot of help in recommending facilities, but during our stay there we were also in contact with Sloan Kettering (not a transplant center, but since it was in NY I was going to get an opinion from them as well), and Mayo. I tried to get in on the gene theraphy trial being done at Mayo, but they did not have any openings for colangiocarcinoma patients. The CTCA doctor did give me information on a chemo trial, and the various hospitals that were participating. At around the same time, my uncle (more on family support later!) contacted the University of Colorado Hospital (UCH) at 10:30 at night, and someone not only answered the phone, they were very helpful. As they are a very well rated transplant facility, and Colorado is my home state, and the home of the aunt and uncle who were helping me out the entire time, we ended up heading out to Colorado. My case went before their liver board the day I went in for my first appointment and we had a plan of attack by noon.

So, from late March to the present, I’ve been undergoing treatment at UCH. They were not very happy with my having had one round of chemo in Atlanta. We did the standard round of Gemcitabine and cisplatin infusion. The next step was a portal vein embolization to try to grow the left lobe of the liver prior to an attempted resection. It turned out that my left lobe did not grow. The resection was attempted, but the doctor did not like the condition of my liver (they didn’t like the scar tissue left by the previous surgery) and I was not handling the surgery well, so it was aborted. The hardest part for me was lying in the ICU the entire night thinking it was all over and succesful. I was not informed until the next morning, but we discussed moving right into a live donor transplant. In preparation for that we planned on oral chemo with Capecitabine/Xeloda and IMRT radiation. Following another insurance related delay of a week(insurance approved the radiation and the transplant, but denied the IMRT! The hospital filed an expidited appeal but heard nothing back) we changed the radiation to 3D Conformal and I started this Monday, October 19, 2015. I have a donor lined up who is undergoing testing now.

Wisdom I’ve gained along the way:

Don’t get enamored with any particular technology.

You have to do your own legwork/research. Find any resources for your type of cancer. Get a
second, third, fourth opinion.

The cancer centers heavily advertise fancy new technology/treatments, but you likely won’t get it.
You’ll likely get the standard approved (by the insurance companies) chemo and radiation for your type of cancer, and surgery.

Don’t get enamored with a particular facility. Don’t accept your initial surgeon’s gloomy reaction, if they have one.

Get as munch info as possible before surgery.

Stay positive when things go wrong, or not as expected.

Even surgeons can get their hopes up for a procedure, only to have things go wrong.

Doctors and hospitals don’t seem to like the way other doctors and hospitals do things – Not Done Here Syndrome. There is no consensus on things like how often biliary drain tubes should be replaced, if/how often they should be flushed, if they should be covered with dressings/Tegaderm film…

Keep moving! Even if all you can do is walk, do it!

Family/friend support is invaluable. You need caregivers. Don’t try to do it all on your own.