Discussion Board Forums Introductions! Introduction

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  • #93887
    middlesister1
    Moderator

    Hi Stephanie- One hint that I was amazed it took me so long to find- once you log in, on the upper right there should be a link to click that says “new posts”- this should show you the individual threads that have had new posts since the last time you logged in.

    And- maybe we could put on the wishlist for future updates to see if there is a way to “follow” a topic.

    Best wishes,
    Catherine

    #93886
    whatnow
    Participant

    Stephanie

    I was diagnosed July 2016 too. And it was from a lung CT having nothing to do with my liver, they just happened to find it. I have the same thing and I’m at MDAnderson in Phoenix. It’s the red-headed stepchild of the one in Houston I guess.

    This blog has helped me hold my head together and I’m sure it will be a wealth of information for you especially if you’re better on the computer than I.

    Janet (whatnow)

    #93885
    whatnow
    Participant

    Hi. I need some direction on how and where to post and then how to go back and see if there is a reply. I just received my youngest granddaughters iphone so I’m also trying to figure that out. Thankfully, I have many helpful grandchildren. They laugh when hearing how happy I was at their age to get a princess phone with a 25 foot cord to take into my bedroom for a little privacy. Times have changed and it’s going to take some time to play catch up with technology (if that’s even possible).

    Here’s my question. Last week 1/4/17 my platelets were 107K and I had CHEMO (7th cycle). Then this week 1/12/17 they were 37K. So no chemo and I go back next week. How do platelets drop so far in such a short time? All I get from onc is that we’ll take another blood draw next week. I don’t feel any different.

    I’ve looked online and it talks about internal bleeding and bone cancer so I’m not getting much there.

    #93884
    debnorcal
    Moderator

    Welcome Stephanie, although I am also sorry you needed to find us. It sounds as though you quickly got the message about how critical it is to get second opinions from CC experts- good for you. We have many patients that are surviving and thriving despite the awful diagnosis of cc. I hope you will keep us posted about your progress and use us as a source of information and support.

    Debbie

    #93883
    vtkb
    Participant

    Stephanie,

    While I dont know your specific situation or if you are a surgical candidate, if there is any chance of surgery in your future and you end up seeking a second opinion at Sloan Kettering, perhaps it would be wise to also meet with the surgeons at Mt Sinai and Columbia while you are visiting NYC. For surgeons Katherine has sought out opinions from Dr. Jarnagin (Sloan), Dr. Schwartz (Mt. Sinai) and Dr. Kato (Columbia). They each have a different level of aggressiveness and one may offer something that the others do not.

    Good luck,

    Billy

    #93881
    lainy
    Participant

    Dear Stephanie, Welcome to our remarkable family and the best place to be for CC support. So sorry to read about your diagnosis and that you had to join our elite group. We know when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may be useful in helping you get through this first leg of the journey.

    Knowledge is the most important tool we have at this point to begin the fight. When you have a chance read some of our Members posts or if you have a question please use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.

    Make sure that the Oncologist you choose along with the Hospital for treatment, are very experienced with Cholangiocarcinoma.

    Do not be shy about getting 2 and even 3 or 4 opinions. This is still a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results. You are already a pro as you have a plan and a good one at that! Please do keep us updated on your progress as we truly care. Below is a site you may find helpful:

    http://cholangiocarcinoma.org/newly-dx/

    #93882
    googily
    Member

    Welcome, but sorry you have to be here!

    You made a good decision by just getting started on chemo, if it was clear that resection was not a possibility. The second opinions will help you have potential next steps in mind, and it’s good to be ready with that info before you need it….

    #12915
    astephigher
    Participant

    Hello All,
    My name is Stephanie. I live in Birmingham AL where I have been recieving treatment for Stage IV Intrahepatic CCA since July 2016. I was diagnosed by an incidental CT done to rule out appendicitis. So far the chemo has kept everything stable. Have plans to seek second opinion at either MD Anderson or Memorial Sloan Kettering.

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