My first post on this site
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I would like to welcome you to this site as well. Glad you are here but sorry you have to be. We are all here to support each other however we can. Please keep us updated on all your progress and let us know if there is anything we can do to help. Sending prayers your way!
MelindaHi there,
Welcome to the site. Sorry that you had to find us all here and sorry to hear what you are going through, but real glad that you’ve joined in with us all as you’ve come to the best place for support and help and i know you will get loads of each from everyone here. Thanks for letting us know what is happening to you right now.
Glad you were able to get the stent issue sorted out and that is something that you should keep an eye on. Stents can clogg up and stuff and if that happens then that needs to be looked into asap. Not much else I can add to what the others have said to you already but I just wanted to stop by and welcome you here.
I hope that you will keep coming back now and please know that we are here for you and will help as best as we can. Looking forward to hearing more from you.
My best wishes to you,
Gavin
Good morning,
Another welcome. We all will be here for you and looking forward to hearing great results after the round of chemo. I agree with Lainy that if you can learn as much as possible, it can only help in moving forward. It is very important to have doctors familiar with CC, and also very beneficial to get second opinions.In addition to having members who were able to have surgery after chemo, we also have some who were told they were inoperable, but on a second opinion found a surgeon who said yes.
I also sorry to hear that already you’ve had such challenges with the stent and infection. I wish you the best in the future.
Catherine
Hello Imcherry. You have definitely come to the right place. There are so many knowledgeable and caring people in here who will give you the facts and also share their hearts with you. The most important thing, I have found, is to keep positive. I know it’s hard at times but it is so necessary for your long term plan.
Sending positive thoughts and energy that your chemo goes well and that side effects are minimal. My husband did 6 months on gem/cis and his only complaint was that good tasted funny.
As Lainy said, read up and become informed.
You can do this.
Melinda ADear IMCHERRY, welcome to the best place to be for CC support, hope and miracles! I am glad you are already in a treatment program and am wondering where you are being treated. Hopefully after the Chemo, the inoperable will change to operable. We have many members who have done just that and we love the word surgery.
Read up as much as you can as knowledge is our best tool for fighting CC and I am sending you some links here which may be of help to you:Newly diagnosed:
http://cholangiocarcinoma.org/the-disease/newly-diagnosed/
Free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foundation-resources/
Biliary drainage – stent information card
http://cholangiocarcinoma.org/biliary-emergency-information-card/
Register for a CURE
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professionals/research/patient-registry/Please keep us updated on your progress and again welcome to our fantastic family!
Hello, everyone. I just learned about this board yesterday and immediately knew that I wanted to participate. I was only recently (about 6 weeks) finally diagnosed with intrahepatic cholangiocarcinoma. When I originally developed symptoms at the end of February, I went through a lot of diagnostic tests, including one false-negative needle biopsy, before finally arriving at a firm diagnosis. My tumor is not currently operable, so I started on a Gen/Cis treatment regimen 10 days ago. In the midst of all this, my stent suddenly failed last weekend, so I was in the hospital to get a new one and to spend about 2 days on antibiotics and fluids to squash the fever. I am feeling quite well this week, just in time for the next chemo.
I am still so new to all this that nothing seems quite real. I wake up in the morning and it takes a little while before I remember that my life has changed so utterly. I look forward to sharing your experiences and insights as I try to deal with all of these changes.
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