November 13, 2009 at 1:59 pm #31223hughesdewyMember
Hi John, welcome, but so sorry too that you need to be here.
Take that as a great sign that your stent is working straight away and bilirubin levels dropping so fast (ie you are feeling better in yourself)… this is a good place to find out everything about CC, so ask anything – guaranteed that the wonderful answers you get will will help provide you with the best information to make informed choices about the course of your treatment.
Take care and best of luck – you sound like you have a great medical team on your side not to mention us lot.
WendyNovember 12, 2009 at 9:57 am #31222lalupesParticipant
Welcome John – I’m sorry you have to be here but this is a wonderful place to be.
I’m glad your doctors seem keen to move forward; one of the hardest things I found with my sister’s cc is what I saw as the lack of any movement. I see now that they were waiting for her bilirubin to come down but at the time it just seemed like an eternity before any progress was made. Please let us know how you get on.
You won’t be alone here.
JuliaNovember 11, 2009 at 10:41 pm #31221darlaParticipant
I’m also wondering how you are getting on. I replied to you at Cancer Compass and haven’t seen any more posts from you so I hope you are doing OK. I am hoping you will be posting on this site again soon. As you can already see, there are many wonderful people here ready & willing to give help & support or just lend a sympathtic ear when needed.
Possibly you were approved for surgery and are recouperating. Let us know how you are doing when you can.
DarlaNovember 11, 2009 at 10:16 pm #31220hollandgMember
I hope I find you well. I recently received the same diagnosis as yourself and I am interested to know how you got on. What advice are you getting from your medical team? What treatment have your received? What was involved and how do you feel? GerSeptember 10, 2009 at 4:18 am #31219daddysgirl-2Member
Hey, John…sending along warm welcome. The journey can be frightening, but the support and information here are comforting. You needn’t feel alone, we walk this path with you.
Peace from Minnesota,
JoleneSeptember 9, 2009 at 3:17 am #31218ireneaMember
Welcome John. We are a supportive group of folks although it’s never good to have to join our little club, as Lainy often says.
It’s a scary and awful thing, but I think if everybody here could tell you one thing it would be to try to put all the horrible predictions of doom out of your head. THis is a nasty nasty disease and it tries its hardest to harm us all, and honestly, it usually wins. But these days a lot of us are fighting a better fight than was thought possible a few years ago. More people are surviving for longer periods of time, and it is in fact possible to maintain quality of life for some time after the diagnosis.
PLease check in often and honestly, expect this overwhelming depression to take hold of you. That, in some ways, is worse than the illness itself. It’s quite a fight.
IreneSeptember 6, 2009 at 4:38 am #31217marionsModerator
Hello John…I would like to follow the great postings of Lainy, Ashley, and Tess by welcoming you. I am encouraged by how quickly your physicians are addressing your cancer. You appear to be in good hands. Although, it is important to become informed about this cancer; it is important to realize that there is not a general rule regarding the response people have to the numerous treatment available. I am sending all my good wishes and am looking forward to your next posting.
MarionSeptember 6, 2009 at 12:58 am #31216tessMember
Hi John and welcome! Never rule anything out… you just never know what the future holds, and cc impacts everyone differently. You will find a wonderful support group here to help with any questions that arise. The fact that the Docs are wanting to move quickly and collaborating together on a plan for you is one of the best possible scenarios. Come back and pulse the group if issues come up that you have questions on.
You’re in our thoughs.
-TessSeptember 5, 2009 at 11:45 pm #31215ashleyParticipant
Sorry to hear your news. The fact that the doctors are talking surgery is a HUGE plus. Even though you call your diagnosis advanced, is sounds like it may at least be contained to the lower bile duct near the pancreas? You will find many strong willed patients and caregivers on this board willing to help you with any info you need. My mother’s CC is called a Klatskin tumor and it up near the liver, so I’m not familiar with the pancreas area for our specific case – but I’m sure many other members will chime in shortly to help you.
AshleySeptember 5, 2009 at 8:52 pm #31214lainyParticipant
Welcome John and sorry you had to find us but you have come to the best place in the world with the most caring and loving people on earth. Yes, it is scary, frightening and frustrating when first diagnosed with CC. Then you read up on it, find out all you can. proceed with a course of action and all of a sudden those first frights turn to fight and you do what you must do with tons of hope and attitude. It kind of sounds to me like they are talking a Whipple surgery? If so, my husband Teddy is a 4 year survivor of a Whipple and he is now 77. You can look up my posts on him using our search button at the top. Just type in Teddy or Whipple or Lainy. If you would like to e mail me that is also just fine and you can click on email under my name. Sounds like your doctors are right on with it and acting quickly which is what we hope for. Please do not think your days are numbered! No one was born with an expiration date on the bottom of their feet. We have people who have been told they have 2 months and are still with us after 2 years. Please keep us posted and let us know how you are doing.September 5, 2009 at 8:27 pm #2664njohnflParticipant
Hello everyone. I was just hospitalized as I was real yellow and just went through 3 weeks of diarea which I lost 15 lbs from. They did an ERCP and placed a 7cm stent in my common bile duct to allow drainage. I was released the next day feeling wonderful and color really returning to normal fast.
Afterwards, I had a series of DR. visits including the surgical group where I learned they all are thinking cancer, CC and just had an MRCP and Pancreas MRI done and still looks like CC is in the advanced stage. Planning on removing my gallblader, 25% of Pancreas, Duodendum and all of the Biliary ducts. I havent gotten word for my surgical followup visit but all tests will be complete next Wed. so I should see them immediately after. All of the Dr’s are pushing for this to be a quick surgery, especially the Gastro Dr. that did the ERCP.
I am just learning about cholangiocarcinoma and it does not look good.
I am a single male, 56 yrs old and this has just insured I will be single forever or 205 yrs anyway.
Any help or info will be appreciated.
You can use my email address, no problem.
Sorry to read these and see others with this problem, may God bless all of you.
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