Hello/ Story of Husband Diagnosed November 2015

Hello, I’ve been a member of this site for nearly a year. It has been a wonderful source of information and resources for me and my family. Thank you all for creating and supporting such a wonderful community. I’ve never posted to the site and now I would like to tell you the story of my husband, Steve, which I hope will offer some hope and information.

Steve was diagnosed with ICC a year ago, November 2015 at the age of 64. Our journey to diagnosis was not that different from what many others have experienced. I will describe it here for the benefit of others who may just be encountering this illness. We now realize that the first symptoms of the cancer were present in January 2015 while we were traveling overseas and he felt very tired and had a lot of stomach upset. The spring of 2015, he had low energy and in June, after visiting an ENT for hoarseness when he spoke, was diagnosed with acid reflux and he was told that he was dehydrated and should drink more water. During the summer of 2015, he tried to increase his water consumption and as he did, began to feel worse, feeling nausea and fullness. His appetite began to drop and he lost the taste for coffee and beer. By September 2015, he was very tired, taking lots of naps (he would never nap), he had no appetite and he had nausea or vomiting. At this point, I insisted that he visit his gastroenterologist, who ordered an ultrasound, endoscopy and CT scan. The scans showed growths all over his liver. Aside from the very upsetting news, perhaps more upsetting at that moment was the gastroenterologist’s inability to say the word cancer to us or to do more than just read the CT report to us. Perhaps, not surprisingly, when we started to ask direct questions about cancer, he told us that these tumors were probably secondary cancer from cancer elsewhere in the body and that it was most likely colon cancer. Since our insurance had not approved a full abdominal scan, there was no way to know if he had colon cancer, without additional scans. We returned home from the doctor’s office and immediately began to reach out to Memorial Sloan Kettering for an appointment. We feel very lucky that we were able to get an appointment for the next day. The doctors at MSKCC were responsive, expert in their interactions with us and forthcoming. While they did not have good news to deliver, the fact that they were clear and forthcoming with what was going on, helped us to understand, plan and take the necessary actions. I think that one of the best pieces of advice, consistently given on this site is to get a second opinion and to go to a major cancer center.

At Memorial Sloan Kettering, we went through their diagnostic tests and learned that Steve had multiple (12+) tumors in his liver. He was deemed inoperable and on the day before Thanksgiving 2015, we received the diagnosis: stage iv Intrahepatic Choloangiocarcinoma. Steve began chemo treatment with cis/gem in early December. The first two sets of scans in February and April showed shrinkage of 20-30% each time. The third scan in June showed stability but no additional shrinkage. Knowing that the efficacy of the cis/gem would begin to erode, Steve decided to enter the clinical trail for the HAI pump and he had the surgery to install the pump on August 12th. (https://www.mskcc.org/cancer-care/clinical-trials/13-066). He is now receiving chemo through the pump (FUDR) along with Gemzar systemically every two weeks. He had a post surgical complication of cellulitis and he was hospitalized for 9 days in September.

In spite of the complication, he has been doing well with the pump. His oncologist is Dr. Maeve Lowery and his surgeon who did the pump surgery is Dr. Vinod Balachandrian. They both have been wonderful–attentive, ready to answer questions and to explain clearly what is happening in each step of this journey.

Overall, he has tolerated the treatments well. Day to day, his energy level is good and he walks 3-5 miles 5-6 days/week.

Steve had a scan today and we hope that when it is read, we will learn more about the efficacy of the pump treatment.

A year ago, we had no idea of what to expect. The information that you all share has been such a help for us to learn about this illness. I hope that by telling our story, in some small way we can offer help to new patients and family members as they seek to understand more about this cancer, treatment options and day to day life.

We set out to focus on each day and making it as good as it can be. There have been good days and there have been hard days but that is ok. As we enter year 2 of living with ICC, our goal is to have Steve’s cancer be a chronic condition that can be managed. Thank you all again for your support, information and community. I hope to be able to share more as we continue to move through treatment.