Topic: Intro & looking for the facts of cholangiocarcinoma
My husband was diagnosed end of December with cholangiocarcinoma, intrahepatic, stage IVB. It took them 2 months to figure it out. They give him the standard median of 12 mos and palliative chemo of Cisplatin and Gemcitabine. We are on day 17 of cycle 1. We have one more cycle before another CT scan. He throws up bile after huge coughing fits. The mets are in his lymph nodes, lungs, and pelvis bone (which was fractured from the tumor). Believe it or not, no side effects from the chemo. Anyhow...
So I'm looking for second opinions and what to expect kind of stuff. I am a pragmatic person. I need the cold facts. My husband is positive and hoping for the miracle. Which I am too, however, I am a stay at home mom with 2 kids under 4. So, I have to plan every which way. Everyone we know is praying for him and our family. We are being blessed in so many ways, I can't begin to list them. SO I don't want you to think I am ungrateful for not having a miracle as of yet. We have had many. Just not the one that everyone is hoping for. But the immediate needs are being met so we can't complain.
My biggest concern is watching my husband suffer through this. He is a soft, gentle man, who doesn't like pain and discomfort, who doesn't right? But he still cries over pulling of band-aids. I almost can't handle it. My second biggest concern is that I am not going to be patient enough for him. I have taught my kids to brush things off and keep going, as long as things are still attached to their bodies. I am a type 1 diabetic and so i have no sympathy for needles.
I am a survivor of a father who had myelodysplasia, brother who had renal cell carcinoma, aunt who had lung cancer (none smoking), uncle who has glioblastoma, father-in-law who has squamous cell carcinoma of the mouth, cousin who had colon cancer, another cousin who has leukemia and he had a daughter just pass with leukemia last year. My reason for listing this is to show that I am not unaware of the prognosis' and how things work in oncology. I do take the doctors to heart and listen to their expertise, however, I just want to make sure that there isn't anything else we can do to prolong - in comfort and humane way - his life. I know liver diseases are awful awful awful.
I love my husband dearly! We have only been married for 7 years. We aren't the death fearing type, we believe in forever families.
If there is anything I am missing or might need to know, please let me know!