Sherit

Hi there. I’m new here, and newly diagnosed with stage 3 cholangiocarcinoma. I’m 54, married for 32 years, with two grown children, and three grandlittles.

My journey began on Aug 14; two days after I returned from my mom’s funeral. I had gone to my chiropractor that Fri for an adjustment and massage. Later that day I began having pain/pressure just below my breastbone, and it was difficult/painful to take in a full breath. My first thought was that the adjustment was a little off (I’ve had dislocated ribs in the past, and it kinda felt like that). I monitored my symptoms over the weekend, and was beginning to feel better by Mon, so I thought nothing more of it.

That next Fri, I had a follow-up adjustment/massage. Later that day, the breathing problem/pain returned. In the wee hours of Sun, Aug 23, I finally had my husband take me to the ER because it was becoming so uncomfortable and painful. They did a CT scan and immediately admitted me because there was a large mass on my liver.

I was in the hospital for 2.5 days, during which time they did an MRI, blood tests, and a liver biopsy. A week after going home, I received my diagnosis.

Previous to this, I had no other symptoms aside from occasional, mild stomach aches. I also don’t have any of the normal risk factors for cholangiocarcinoma except being 80 lbs overweight (well, about 50 lbs over as of today…). I do have an autoimmune disorder (Hashimoto’s) but that, as I understand things, doesn’t constitute a risk factor. In Feb this year, I started an elimination diet to manage the Hashimoto’s symptoms, and have lost 30 lbs since Feb. I don’t attribute the weight loss to the cholangio, as I’ve done this elimination diet previously and had the same results: 25 lb weight loss by eliminating gluten, sugar, soy, dairy, and junk.

Currently, none of the breathing problems have returned. All I’m experiencing is occasional abdominal pain, mild nausea, and pressure/pain in the area of my right kidney. I’m told this could have to do with the size of the tumor, putting pressure on the kidney.

I’ve been fortunate to live about 4 hours from MD Anderson, and will be receiving my treatment through them. My oncologist used to head the international cholangiocarcinoma research network and the medical advisory board to the cholangiocarcinoma foundation, so there’s that to be thankful for, too. 🙂

He wants me to begin chemo within the next 14 days. If insurance approves, I will be participating in a clinical study. If not, then standard chemo. He is also going to order further genetic testing to see if targeted therapy and/or immunotherapy are options.

Right now I’m on an emotional roller-coaster. I’m trying to remain optimistic that we can beat this. I’m overwhelmed with trying to learn and understand all of this new information. And yes, I’m a little scared…but when the fear kicks in, I do my best to focus my mind on other things.

I appreciate you approving me for this group, and I hope to make this part of my support network.