Thank God I finally found a site for my type of cancer

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Viewing 11 posts - 1 through 11 (of 11 total)
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  • July 13, 2009 at 5:07 pm #30383
    devoncat
    Spectator

    Hi Diane,
    Like everyone else…welcome to the site. We are VERY supportive and a wealth ois cancer of information. This cancer progresses differently in everyone so there is so much knowledge on this board so please if you have questions, ask away!

    Kris

    July 11, 2009 at 6:51 pm #30382
    marions
    Moderator

    Diane….You can count on your own cheerleading squad on this site. I am wishing for a good report on the 30th.
    Marion

    July 11, 2009 at 3:48 pm #30381
    lainy
    Spectator

    Hi Dianne, good to see you! I don’t know how long ago you had the radiation but it does keep on working for several months. Not sure why you have to wait so long for the PET results as we always get them in a week. Isn’t that the worst? I think the worry about test results just about tops anything. We just got Teddy’s latest results on PET and LABS and they were good so hope you follow in our footsteps. Please keep us posted as it is good for you and good for our Board.

    July 11, 2009 at 3:40 pm #30380
    dianne
    Spectator

    I’ve spent the past hour or so familiarizing myself with the posts on this site. I’ve begun to understand the magnitude of this rare little disease, and was shocked to learn this was Walter Peyton’s cancer — who knew?

    Although I’ve had several surgeries (3) and rediagnoses, I will conquer this critter. On 7/30/09 I will learn the results of my latest PET/CT scans & blood work to see if the tiny malignant lymph node outside my aorta has grown or stagnated. Moffitt Cancer Center’s GI tumor board will discuss my scans to determine my next course of action. Dr. Mo Malafa is my GI surgeon and Dr. Jonathan Strosberg is my oncologist; both are in the GI clinic at H. Lee Moffitt Cancer Center & Research Institute in Tampa, FL.

    Gemzar and 5-FU, which were well tolerated, had little effect on my tumors. Radiation was more effective, but didn’t obliterate the little rascal. Possibly the chemo kept it from spreading. This site has provided some treatment options for discussion with my doctors.

    Thanks to all who take the time to give hope and guidance to those of us living with this disease. I especially like all the positive phrases emphasizing good attitudes and outlooks.

    Dianne

    July 11, 2009 at 3:02 am #30379
    rook13
    Member

    Hello Diane,

    I’m glad you have found what I know to be the best place for support & help in dealing with cc. This site and everyone here has educated my husband and myself in dealing with all that comes with cc. It’s like a library full of information only all the information is geared toward cc and you don’t have to sift through to find it! The stories of others has been helpful to my husband as he hears the facts from others who are going through the same thing as he is.

    Karen

    July 7, 2009 at 1:28 am #30378
    tess
    Member

    Hi Diane, and welcome! You’re a fighter, this is clear….

    Wishing you continued strength and we look forward to hearing more from you!

    -Tess

    July 4, 2009 at 7:32 pm #30377
    devoncat
    Spectator

    Welcome Diane,
    Glad you found us. We are a very supportive group so if you have questions or just want a good rant, we are here. You wont meet a nicer group of people. This is a terrible disease and this is a wonderful place to help you cope.

    Kris

    July 4, 2009 at 1:50 pm #30376
    lainy
    Spectator

    Welcome, Diane to the best little club in the world that no one wishes to join.
    We sure would like to hear more about your journey. You will find the most courageous, loving “family” on this board. Please feel free to come here to vent, ask or advise. Looking forward to hearing more about you.

    July 4, 2009 at 12:03 pm #30375
    marions
    Moderator

    Diane….I echo Kristin in welcoming you to our site. Many others have also commented on not being able to find us. Do you have any idea as to why this is happening? Has your physician spoken mainly of “bile duct” cancer? Again, I am so glad that you are now part of our group.
    Marion

    July 4, 2009 at 11:32 am #30374
    kristin
    Spectator

    Hi Dianne,

    We’re so glad you found us! And I know what you mean about feeling relieved. This site didn’t exist when I was diagnosed six years ago, and it was such a lonely feeling, thinking I was the only person in the world who has ever gone through this. You’ll find all kinds of information and widely different experiences here, and the kindest, most supportive group of people ANYWHERE.

    Please tell us a little more about yourself!

    Hope you are having a great, relaxing holiday weekend.

    Kristin

    July 4, 2009 at 4:23 am #2533
    dianne
    Spectator

    I’ve dealt with cholangiocarcinoma for over 2.5 years and have been unable to find much on the web except some pretty scary info. This site seems to be tailored to people who are actively dealing with our specific type of cancer. I am relieved.

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