As I read so many of your messages I realize that we are not in this alone, although sometimes I feel we are the only family effected with this horrible disease. Here is my story:
My mom is a very healthy, fit, and an active 79 year old woman who has never had any medical problems. My mom’s first sign of what we now know is cholangiocarcinoma, was constipation and bloating. She complained about this for a few weeks, I gave her over the counter meds and told her that as we get older our system changes. She was very concerned because she has never had these problems before. After unsuccessful attempts to correct her problem she went to her doctor. She has been going to the same doctor for over 25 years, and it was her doctor who had the foresight to run blood work on mom, she ran a CA125 for ovarian cancer. This came back very high, which began a series of test. Even thought my mom’s cancer spread and was not found until it was stage 4, if it were not for her doctor to run this initial blood work she would have been jaundice before we knew anything. To this I owe my mom’s life to this doctor.
Within a few weeks my mom diagnoses was confirmed by a series of CT scans, biopsies and PET scans. Her cancer originated in the bile duct, and spread to her liver (klatskin tumor 4.7 cm) left hepatic lobe. There are over 15 other areas that it spread to within her stomach lining. Stage 4 and it is inoperable. She has now gone through 11 chemo treatments, 2 weeks on 1 week off with Gemzar and cisplatin. The first CT scan after a few months showed little shrinkage but some, the second CT scan a few months after the first showed better shrinkage of all cancer cells in her stomach, but not in her liver. We are having problems with her blood levels because the chemo is so strong, she had to get a blood transfusion last month.
She is so amazing and strong. She is handling everything so well and has the most positive attitude. She is holding me and my three sisters together; we are getting our strength from her so that we can be strong for her and support her thru this.
My question is at what point I start going to other hospitals that specialize in this particular cancer, consider alternative medicine, check into clinical studies etc. The doctor she is seeing in the Fort Lauderdale area is great, and right now we are seeing a decrease in her cancer. I am just not sure how much more to do now, I keep hearing the words “quality of life”. But I want my mom to live even if her quality of life for the short term is to save her life and to do whatever it takes. I also wonder if anyone has had any good response to certain types of food and nutrition that help keep blood levels high. She is also losing too much weight; she weighed 127lbs now she is down to 114. Any suggestions on weight gain.