We just finished watching your presentation at the 2016 CCF meeting and want to thank you for your strength in sharing your story with the cholangio community. It is so powerful to see another person’s story, to understand how similar our experiences are. You are truly an inspiration to us. We wanted to write you to share our story and to seek your insight and advice, particularly on the NIH trial. 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. Shortly after my diagnosis, my wife heard your story, which has served since to provide us with inspiration and hope. We have a 3 year old daughter and a 4 month old son, who also provide us with 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. (I appreciated your description of the Gem/Cys treatment and steroidal side effects.)
We were very interested in enrolling in the T-cell immunotherapy NCI clinical trial at NIH that has been so successful for you. 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, who said he knows you well, 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. You mentioned in your CCF meeting talk that something like 12 (?) patients have been treated in the NCI trial, with 3 having partial responses. Could you clarify the number of patients with solid tumors that have been treated in the trial, the number of cholangio patients, and the number of patients who have responded? 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/spe … e%2Fstory.
I also am curious whether extreme fatigue was ever an issue for you. I have found such fatigue to be the primary obstacle for me in getting back to work and living as I would like to live.
Thank you once again for what you are doing for the community,
Chris and Laura