Two months after my mom’s diagnosis

Hi everyone. I decided to join this community after spending hours of devouring many of the previous posts, which were incredibly helpful. Since it was especially helpful when the posts were more detailed, I will try to make mine as specific as possible as well.

My mother, who is 67 and retired, had a CT scan due to abdominal pains in mid-September this year. The scan showed a tumor on the liver, which led to a biopsy, which led to a diagnosis that it was a metastasized cancer on the liver with the primary cancer still being unknown. All that was done in Nashville.

Luckily, my mom’s older sister opened her home in NJ for my mom to stay in and suggested that she get treated at Sloan-Kettering. We were able to get an appt relatively quickly, and my mom had a PET scan there on 10/8, which also stated that she had “adenocarcinoma of unknown primary.” It also showed that her tumor had gotten larger (4.1 x 2.7 cm from 3.0 x 2.7 cm) and that her lymph nodes and the left portal vein were affected.

It was not until we saw Dr. Fong at Sloan-Kettering in NYC in mid-October that my mom was diagnosed with cholangiocarcinoma (about a month after her initial CT scan). We were relieved to get the diagnosis because it meant she wouldn’t have to be tested any longer, but we were also very disappointed to hear that she was not a good candidate for surgery … yet. Dr. Fong thought getting chemo first (gem/cis combo) would increase the chance of a successful (and possible) surgery.

So my mom started chemo on 10/18. The plan was to do one treatment per week for two weeks then rest on the third week. But after her first treatment during the first week, her medical oncologist, Dr. Latif at the Sloan-Kettering in Basking Ridge who is wonderful, recommended that she get a stent surgery to drain her liver because her bilirubin was too high for chemo to be effective. So my mom stopped chemo mid-cycle, and we went to the main hospital in NY for the surgery. Drs Brown and Getrajdman performed the stent surgery, and after two attempts (on two separate days — we stayed at the hospital three nights), they were able to place two metal stents successfully. Since then, her bilirubin numbers have been going down (1.1 was the latest). Oh, and she was never jaundiced and it wasn’t until the day of her stent surgery that she felt itchy.

So after one week of unexpected “rest” from chemo, my mom started chemo again on 11/4 and is going strong. She’s tolerating the chemo relatively well. She’s not losing weight and is exercising regularly. The side effects she’s been experiencing are: loss of appetite (she’s forcing herself to keep eating in spite of it), hair loss (though not drastic; she does have a lot of hair though ), tingly sensations in her fingers, fatigue, shortness of breath when she’s going up the stairs, and body aches. These symptoms haven’t been debilitating or constant. We’re very grateful for her attitude and spirit.

She will continue her chemo treatment until her next appointment with Dr. Fong on 12/30. She’ll get another CT scan then, which will hopefully show us that the chemo has shrunk her tumor and she’s a better candidate for surgery. Until then, I’m getting the sense that there’s no sure sign of knowing whether the chemo is working or not. Based on what I’ve read on the discussion board, it doesn’t sound like the tumor marker numbers are always the most accurate indication. Do any of you have any thoughts on this?

In the beginning, I had a very hard time just leaving everything to the doctors and going along with what they said, especially when it came to chemotherapy. I found the discussions on “to chemo or not to chemo” really helpful. Given my mom’s own wish to fight as aggressively as possible and her overall health otherwise, to not chemo wasn’t really an option, but it was helpful to hear different opinions. The doctors at Sloan-Kettering seem to have a very aggressive approach about chemo and medication which makes me feel uneasy, but I’ve been deferring to their treatment plans in the hopes that those things will get my mom to surgery soon.

I felt such love and compassion from reading the posts on this discussion board. Since my mom’s diagnosis, we’ve been in a perpetual state of waiting — waiting to get the test results, waiting for appointments, etc., etc. — and not knowing. It’s been an ongoing test of patience and faith, which I often think I’m failing. Because of that, I’m realizing I need to remind myself just as often to be more generous with myself. I think this board will be a good support for that. I’m so grateful that I found it. Thank you all.

Caroline