Hello Everyone
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Hi Charlet, So sorry to hear about the loss of your grandpa. I think it is awesome that your are doing a research paper about cc. I will have to read about MAPK 13; never heard of it. Cholangiocarcinoma is certainly a cancer that needs much more research and those in the medical field need to be more educated about it. Would love to see your paper when you are finished. Like those above said, do some searching on the site here and you will find some good first hand information from patients and caregivers on the frontlines fighting this disease. Wishing you the best. Your grandpa would be proud. Nancy
Welcome Charlet – Losing your grandfather is a big loss and very hard when you see how much it hurts your dad and your other family members, as well as dealing with the loss for yourself. Writing this essay is good therapy for you too. We are all frustrated that CC often gets diagnosed too late for effective treatment, although I guess this is expected due to the rarity of there is so little money spent on research and development. I hope your journey helps you learn a lot and make an impact on this disease. I pray you and your family find comfort in your memories of your grandfather. Blessings, Susan
Dear Charlet, I am so sorry about your Grandpa and I hope all the good Memories of him will last a life time. The best advise I can give is to read, read, read. Go to our Search Engine at the top of the page and type in anything and you will get many older posts that will give you lots of information. We answer questions that our members ask and to go into lengthy detail would take mega time and some things our members find upsetting to read about. We pray for Miracles daily and who knows maybe your research could lead to something exciting. You are a wonderful Granddaughter and much good luck to you.
Sorry to hear of your loss. Charlet, I don’t know where your grandfather was treated, but there is good treatment available, but almost solely in big city cancer centers because this is a rare cancer (~ 2000 cases diagnosed per yr in the US). Right now, my understanding is if the cancer is detected early enough, as it was in my case, surgery is the best chance for a ‘cure’. Smaller hospitals have almost zero experience with cc. It may have been in your grandfather’s case, the disease had progressed too far and the doctors may not not have had experience with it as well.
This website provides good support for patients and their families, and a number of us have corresponded with patients and their families when it makes sense. I know I have had several phone conversations with family members and I know many others here had as well. This isn’t just a website. Because of the rarity of the disease, patients are often scattered all over.
Good luck with your research.
Hi everyone,
My name is Charlet and my grandpa was diagnosed with Bile Duct Cancer October-November of 2010. He passed away in November of 2010 just a few weeks after being diagnosed. It was hard to deal with only being 18 and trying to be supportive for my family especially my dad since this was his father. I signed up for this website because I am doing a research essay in my English class at my college on bile duct cancer and the problems with minimal treatments available. I am also researching how there isn’t much support for families in the hospital and my grandpa’s cancer doctor wouldn’t give us too much information on this cancer or lead us in the right direction with the many decisions we had to make as a family. I am also researching the MAPK13 enzyme in the body that can be deactivated to help treat this cancer/ shrink it. I f anyone has any comments about this or someone i could ask more questions to that has gone through the same things please contact me through this.
Thanks,
Charlet Dornbusch
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