ketzey15
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Hello Crider,
It is heartbreaking to hear about all of what you and your family has had to deal with. My father went through months and months of testing with inconclusive results. It is frustrating to know that something is wrong, and Dr’s are telling you that they can’t figure it out. Well when we finally did it was too late, my father passed away 5 months later. I’m not writing this to be a downer….I am writing this to tell you that you do need to educate yourself and not rely on what is told to you. This is a rare cancer and there aren’t a lot of doctors that could consider themselves experts in cholangiocarcinoma treatments. It also sounds odd to me that they could remove tumors without noticing right there and then that it was cholangiocarcinoma and not pancreatic! You are lucky in a way because I am quite sure if they knew it was CC they would not have performed surgery. CC patients with metastatic spread to liver, pancreas and lymph nodes are not surgery candidates. I am saying these things from personal experience with my father, and the fact that I am a veterinary student at Cornell, and have studied similar diseases in animals. I really hope that chemotherapy helps your situation, my father was not a candidate for radiation, but he did do Gemzar, and he had the best quality of life when he was on Gemzar. His oncologist however, wasn’t happy with the lack of tumor shrinkage and changed his chemo to 5FU which put my father in the hospital 2x’s before he had to stop chemo completely. Once again keep yourself informed of new treatments and even alternative treatments. There are a few people that have blogged on here before that have had wonderful success treating with alternative methods.
I wish you all the luck in the world…this cancer is a terrible monster and it seems to take the most undeserving of people! Just remember to cherish every moment you have and leave no chance for regrets.
Take Care,
KetzeyRhonda,
I too am very sorry to hear about the struggle you and your husband are enduring. When my father became too ill to eat it was a battle to get anything into him. He lost over 50 lbs (only started at 145) and it was terrible to see because this was a man who truely believed in the healing power of foods, being razed by an old czechloslovakian gramma. Towards the last few months he really enjoyed fresh fruits, jello, pudding, oatmeal and grits. We tried to add anything with a few calories to it but anything fatty just made him sick. Bile is meant to break down fats and when our bodies sense lipids there are chemical signals sent to the gall badder and pancreas to contract and “spit” bile into the first part of the small intestine through a tiny sphincter. Anyway I know you want to add calories but try doing it through easily digestable carbs because pushing fats on him may induce vomiting, since the system that is meant to break them down is not well.
Once again, everyone is different and your husband may have an easier time with fats than did my father. Honestly, the bottom line is try to keep him comfortable and happy. Don’t be afraid to call his doctor and demand nausea medications, at first it may seem like they won’t be covered by insurance, but believe me ( my fiance is a pharm) you can get almost anything covered if you pursue it.
I wish the best for you, your husband and your family. My father passed away less than a month ago, after being diagnosed in July. I miss him dearly, but I know in my heart that he lived a much richer life dying at 49 than, many others live in 85 years. Take comfort in knowing that you have done and will do everything in you power to keep your husband alive, but most of all happy.
This cancer is a cruel monster and I am once again terribly sorry for all that you are going through…
Take care,
Kara
