Discussion Board Forums General Discussion Long term survivor with cc

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  • #23903
    marions
    Moderator

    LuLuu….that is the great puzzle. Nothing in particular in re: to diet, exercise, sleeping pattern, etc. These are CC patients who, simply, respond favorably to their treatments whereas so many others with the same approach don’t have the same results. Wishing and hoping for your husband to belong to this group. Keep up the fight Luluu. By gathering several opinions from physicians and medical centers familiar with CC you and your husband will be making “informed decisions” which I believe, is the way to approach this cancer.
    Tons of hugs coming your way,
    Marion

    #23902
    luluu
    Participant

    Marions, I find this information very encouraging also and would like to know more. Is there anything in common with these folks….like diet, supplements, etc? We must dig deep to find out why people are able to survive and many can not. I pray that this will be my husband.
    Lulu

    #23901
    marions
    Moderator

    Kristin: Nothing unique about the CC of any of the people I had mentioned nor, is there a wonder drug. I wish there was. Seems, as if their bodies just responded positively to whichever treatment they chose to go with. Two of the five had never used chemotherapy. In fact, one person had two liver lesions for more then 11 years. The lesions have not changed in size, nor have any others shown up anywhere else in her body. She had never been treated for it, no resection, no chemo, and no radiation. Another person (he passed away this year at age 90) had CC for over ten years and had been treated with Xeloda (one a day) without a break. Another person had a resection followed by Gemzar (for 2 months) and she is getting close to the 10 year mark. Another person had a resection and no follow up treatment. I believe he said to be 10 years passed diagnoses. The other lady I had spoken with was being treated with I believe she said Cisplatin and Gemzar. She had a resection 7 years prior to recurrence.
    And then there is our Jeff who is 91/2 years passed diagnoses. Isn

    #23900
    hollie
    Member

    Hi Jean,

    This post also made my day. Thanks for some encouraging words regarding this disease. There is always hope and we need to remember that! My Aunt is fighting cc and it has been very emotional and hard to deal with. Keep the good thoughts coming! Hollie

    #23899
    kristin
    Participant

    “Personally, I know of five people who have passed the 10 year mark.”

    Marion, do you mean people who had successful resections, and the cancer never came back? Or do you mean they’ve gotten through ten years with treatment– which would be AMAZING?

    Could you give us a few more details? Thanks!

    Kristin

    #23898
    mercedes
    Participant

    This post just made my day!!!

    #23897
    marions
    Moderator

    Jean…..that is what we are hoping for – 10 more years and up….and 10 more years and up….and 10 more years….and so on.
    Hugs
    Marion

    #23896
    jean
    Member

    Marions

    That’s wonderful to hear…my hope is to be one of them! I found this person’s story so compelling because the tumor has never been resected. And it is so puzzling how this disease does have such discrepancies in survival…really how little is known about it. You’re right, it is about raising awareness so that hopefully more research can take place…so that lives can be saved…prevented and cured.

    Jean

    #23895
    marions
    Moderator

    Jean….There are several long term survivors with CC. Personally, I know of five people who have passed the 10 year mark. It is puzzling as to why there can be such a discrepancy in the survival rate with this cancer. We just have to continue to raise awareness of this cancer with the hope that we are being heard and that more research is allocated to CC.

    #1688
    jean
    Member

    Hi Everyone

    I had a very interesting conversation today with a physician here in Seattle (who is an oncologist) regarding a very good friend of hers that has had cc for “decades”! She couldn’t remember all of the specifics because her friend was diagnosed so long ago…to the best of her memory, about 20 years. It was a biopsy proven inter hepatic tumor that was not resectable and has never been resected. She said they just watched it for a long time and that she has received a variety of chemo regimes over the last 10 years for metastatic disease. She said her friend continues to do well despite this!

    I’ll try to get more specific information when I can e.g. where are the mets, what chemo regimes, has she had radiation? I just found this so amazing and just shows what we don’t know about this disease…it can be so aggressive at times and evidently a very chronic problem as in this case…and the continuum between. Certainly points to the need for research!

    Her story was both so amazing and so hopeful that I wanted to pass it along.

    All the best!

    Jean

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