kelley
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Thanks Peter! Those are great websites. I wish we could gather everyone together in one place to share our stories. Thanks for the good info.
Hi Sarah,
I can’t answer all your questions, but will try to answer some. It seems that MD Anderson, Sloan Kettering and Mayo Clinic seem to handle the most cases of cholangiocarcinoma. They don’t seem to treat it the same, but seem to see more people with it. I would suggest that no matter what the doctor says that you make sure to get a second opinion.
There is not a lot of evidence pointing to things that work, but it seems that there are more people getting this kind of cancer now. There are new chemo drugs coming out all the time, as well as other kinds of treatments. I think it is important to keep yourself and your mom informed about all the options. That’s why I love this site. It gives us a chance to share what we are learning and to help each other.
I don’t know much about the myositis. I hope you can find the help that you need. Good luck and keep us posted.
Kelley
I’m sorry that your husband is not feeling well. I wanted to reply because my brother Mark who also has cholangiocarcinoma went through a failed operation in November. It seemed to take quite a while for him to get feeling better. It seems that the surgery and the cancer take a lot out of you.
I don’t know a whole lot, but it seems from talking to others with this cancer that after a while you start to see a pattern. Sometimes feeling good, other times in pain, with nausea etc.
My brother went through a pretty hard time after the operation, then about a month of feeling good, then the last week he was not feeling great again. The doctors seem to say that it depends on the tumors. Mark has a large tumor on his liver which causes pain and nausea, as well as other tumors on his omentum. Sometimes the tumors cause the nausea and pain, other times there doesn’t seem to be any. It seems that cancer is a puzzle.
I would stay in close touch with your doctor. They always say that if he isn’t feeling good he should come in. There are things they can do to help.
I hope this helps. Good luck.
KelleyHi Everyone,
I just wanted to say how glad I am to be able to get on this site and see what kinds of things you are all doing. Isn’t it interesting that we are all dealing with the same disease and yet our doctors seem to handle things differently? That’s why it’s so good to hear from you. I think it helps to give us all hope. I wish I knew how to answer all the questions that are asked. The good thing is that the more of us that gather on this website, the more information from different places in the world we can receive, and the more chances there will be for someone to be able to answer our questions. Keep the information and good vibes coming. Know that we are cheering for each of you and your loved ones.Love, Kelley
