Introduction

Hello to everyone on the board! I am a 43 year old who was diagnosed with stage 4 intrahepatic cholangiocarcinoma in June 2015. In addition to a large tumor (~10 cm) in the liver, a number of smaller satellite hepatic tumors were identified as well. The local lymph nodes were swollen and about 10 pulmonary tumors (~1 cm) were also identified, indicating metastatic disease. My wife and I have a 3 year old daughter and a 4 month old son, who provide us inspiration. We have two beloved dogs who are part of the family and have provided us with great support as well!

A quick rundown of my treatments to date: We are located in Maryland and have been working with Johns Hopkins. Starting in July, I have had two chemoembolization (TACE) procedures targeting the large tumor in the liver. I have also been on Gemcitabine/Cisplatin for about six months to attack the metastatic disease.

We were very interested in enrolling in the T-cell immunotherapy NCI clinical trial at NIH that has been so successful for our friend Melinda. Last July, after a CT scan showing progression (new and growing tumors in my lungs), we worked with NIH to determine my eligibility in their trial. We sent blood samples, biopsy material, etc. The necessary markers were identified that would have made me eligible. However, and here we can report some good news, the TACE procedure at Hopkins has actually turned out to be quite successful in killing cancerous cells in my liver, to the extent that there was no “kill site” identified, i.e. no good location to harvest pure tumor cells. NCI essentially told me that I would need to grow some new pure tumor material for them to have enough material to work with. The cm-sized tumors in my lungs were too small to extract, as laproscopic techniques would require tumors at least 2 cm in diameter.

Finally, we traveled to MD Anderson to meet Milland Javle to find out what other emerging treatments might be available to us. He mentioned targeted chemotherapy and immunotherapies as being possibilities.

Currently, the size of the lesions are stable to slightly decreasing. The decrease seems to be mostly in the liver tumor and may be due to the TACE procedures, which killed many of the cancer cells, leading to slow shrinkage over time. We have reached the end of the standard-of-care Gem/Cis treatment (about 6 months of treatment). While additional gem/cis chemo treatment treatment is not required at this point, we have decided to continue this treatment for the foreseeable future. I have mixed feelings, because I am too fatigued to work and am becoming despondent being stuck at home in a useless state.

We are trying to learn as much as possible about the treatment options available so that when we reach a state of progressive disease, we can make an informed decision. Of course, it is difficult for the public to get information about what is happening in ongoing clinical trials. BTW, the Washington Post just published an article yesterday about an Adoptive Cell Transfer study in Europe: https://www.washingtonpost.com/news/speaking-of-science/wp/2016/02/16/why-its-too-early-to-get-excited-about-this-unprecedented-new-cancer-treatment/?hpid=hp_rhp-more-top-stories_no-name%3Ahomepage%2Fstory.
Chris and Laura