irenea

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Viewing 15 posts - 1 through 15 (of 93 total)
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  • in reply to: Shooting pain in right side #40665
    irenea
    Member

    Yay!

    Thinking of you, Lisa.

    in reply to: Long term survivor with cc #23910
    irenea
    Member

    Hi All,

    Figured I’d throw in my two cents on this discussion (man, do I go through my pennies this way!)

    I don’t expect to be a longterm survivor but I have already survived two “edcuated guess prognoses”. I think we can al reasonably have a bit of hope that so little is actually know about CC that so-called long-term survival is a possibility, statistically, for at least a few. One day they’ll figure out why.

    My own case: tumor first seen iin March 2008. Failed effort at resection in Sept. 2008. Have declined chemo and radiation not possible given location of tumor. Tumor did not grow for about a year but it is now; there is also a second one within liver. I certainly don ‘t feel well and struggle with symptoms, but am not nearly as sick as I “ought” to be by now.

    I just don’t think enough is known that no hope is possible. Now the emotional turmoil on the other hand — there is a whole other topic.

    irenea
    Member

    I hate when somebody looks at me and while he/she does not say a word, he/she is clearly thinking “I thought people were cancer LOST weight. What’s up with her?”

    irenea
    Member

    Amen, Betsey!

    irenea
    Member

    Oh wait — being accused of “playing the cancer card.” That’s a favorite too.

    irenea
    Member

    How about: “You don’t LOOK sick!”

    in reply to: Aunt Sophie #38493
    irenea
    Member

    Hollie:

    Please know that we are all thinking of Sophie and you at this most incredibly difficult time.

    You were so right about how weird and cruel this disease is — the lack of jaundice, the very different paths it takes with so many of us.

    It sounds as if your family has made every effort to love and care for Sophie, and that has to be an incredible comfort to her.

    I feel just so awful. I have always felt sort of like Sophie and Lisa and I were sort of odd cyber-soulmates because we all were diagnosed around the same time and had similar circumstances in terms of age, accidental diagnosis, and a lot of other things.

    If you can, Hollie, please let Sophie know that Irene in NH sends her love. Truly.

    Irene

    in reply to: anti-androgren therapies? #37319
    irenea
    Member

    One more thing: here is a link to a study concerning anti-androgen and pancreatic cancer: http://www.springerlink.com/content/j1n733q737334482/

    in reply to: Dad diagnosed #37303
    irenea
    Member

    Hi Bob,

    Welcome to our world — nobody wants to be here, but our residents are the most kindly and friendly you will find.

    SOrry about that long battle to get a diagnosis — CC is like that; typically very hard to diagnose.

    I am sure folks will have suggestions for questions, so I will just briefly toss in my two cents.

    First, please get a second opinion, no matter what this doc offers, promises, orotherwise tells you. Docs, like the rest of us, have subjective feelings and they do come through some times. And ultimately, if you talk to two docs and they to see things in the same way, it is a comfort.

    Obviously you want to know of potential for surgery, radiation, and/or chemo. Chemo has a bad track record with CC, but many folks feel like it is still worth a try. Those are personal, quality of life decisions we all have to make.

    I would also ask to get involved with a palliative doc early on. These docs are not just focused on end of life; they are concerned with quality of life. I wish I had agreed to see the palliative care people much earlier than I did.

    I;m sure others will offer more advice.

    We’re thinking of you and your family.

    Take good care.

    Irene

    in reply to: Hi Kris, wondering how you are doing? #37074
    irenea
    Member

    Hans and Kris:

    We are all sending every single good thought your way…I know you can feel it.

    Irene

    in reply to: Update From Irene in NH #35605
    irenea
    Member

    Hi All,

    I appreciate all of your replies, ALL of them.

    I don’t know what I will do, but I do know that for whatever time I have, the folks on this board have been an immense source of support and have even helped a little when I’ve felt like the most lonely person in the universe.

    Peace to all of us. Even me.
    Irene

    in reply to: Update From Irene in NH #35595
    irenea
    Member

    Look. No offense, and I know faith is a comfort to many people here, but I do not believe that this horrible disease is any part of God’s plan.

    in reply to: I’m famous! #36038
    irenea
    Member

    Lisa — of course you are already famous among us!

    Can’t wait to see the article — and I am so glad you voiced what so many of us feel about the support for the “popular” cancers.

    Take good care.

    Irene

    in reply to: From Sophie #33845
    irenea
    Member

    Hi Sophie:

    So very glad to hear from you. But am so unhappy with all the current horrors.

    I continue to send you my good thoughts and good wishes. We all have to learn just to find those moments that make it worth going on, don’t we?

    Love,
    Irene

    in reply to: The National Financial Resources Guidebook for Patients #33597
    irenea
    Member

    Just an FYI to folks: this Patient Advocate Foundation offers a co-pay program to assist those of us with financial challenges with co-pays, but cholangio is not on their list and at this time, it appears that people with this diagnosis are not eligible.

Viewing 15 posts - 1 through 15 (of 93 total)