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Viewing 15 posts - 1 through 15 (of 324 total)
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  • in reply to: Had CC for a year #100226
    debnorcal
    Moderator

    BillM,

    I am so glad you are having such a positive response to the Keytruda!  A number of our members had great response to this therapy through a two year treatment course, and no evidence of return thereafter!

    Debbie

    in reply to: Husband, 55 y.o. diagnosed with cholangiocarcinoma #99598
    debnorcal
    Moderator

    Jules,

    I am so very sorry for your loss. I will keep your family in my thoughts/prayers.  I can’t imaging how painful this must be for you.  I hope that, in time, the joy of raising your young child will ease some of your sadness.

    Debbie

    in reply to: new to this site, need some advise #99597
    debnorcal
    Moderator

    Hi McFmags,

    I’m sorry your husband is dealing with cholangio, but glad you found this site. We are a community of caring, supportive patients and caregivers with a wide range of experiences with this disease.  So much has been learned about CC in the six years since my husband was diagnosed.

    I’m not familiar with mistletoe therapy, so I can’t offer any suggestions about it.  I did want to ask if your husband has had a biopsy and genetic profiling done.  There are some effective treatments for certain genetic mutations.

    welcome to our group.

    Debbie

    in reply to: Survived very long #99497
    debnorcal
    Moderator

    Catherine,

    I’m so sorry to hear that your Mom has passed. You have my deepest condolences.

    i became aware of your Mom’s CC journey in 2014, when I joined this group to better understand CC and be able to support my husband, who was diagnosed with Hilar CC in 2014.  Your mom fought through so much, and I’m sure all your love and support meant a great deal to her.

    I wish you peace and wonderful memories of your mom.

    debbie

    in reply to: In Loving Memory of my Wife #98767
    debnorcal
    Moderator

    Russ,

    I am so sorry for your loss.  May your wife, Peggy, Rest In Peace .

    Debbie

    in reply to: World Cholangiocarcinoma Day #98224
    debnorcal
    Moderator

    Wow!  That’s wonderful.

    in reply to: My 29 Year Old Son was diagnosed with CC two weeks ago #98223
    debnorcal
    Moderator

    Jeff,

    i am so sorry that your son has been diagnosed with CC, but so glad you found us.  This is a rare disease and most community and regional hospitals are simply not equipped to treat it.  Your son needs to be seen by one of the expert centers, who see many CC patients and are on top of the latest and most promising treatments. Fortunately, you are near some of the best expert medical centers for this disease. You can find a list in the “newly diagnosed” section of our website.

    I wish your son the very best.

    Debbie

    in reply to: Unfortunately, another introduction. #97755
    debnorcal
    Moderator

    Jonathan,

    I would also like to welcome you to our discussion board family, although I’m so sorry that you have reason to be here.

    I agree with Mary’s points- it is good that you are being seen by a medical center with expertise in CC, and also good that you started treatment promptly.

    CC is a frightening diagnosis and general information found on the intetnet can be so discouraging.  It is important to understand that much if that information includes results for patients treated by community hospitals with little experience with this disease.  The major centers are utilizing the latest research and treatment modalities,, and are having some success.

    My husband was in his mid 50’s when he was diagnosed with Perihilar CC, and his prognosis was very poor. At the time, we also had young (early-mid teens) children, and we refused to give in to this disease and go the palliative route, as advised by our initial doctors.  We got 2nd and 3rd opinions, and found a hightly skilled surgeon that was willing to resect.  Now, three years later, he is cancer free.  There are more and more non surgical treatments that have emerged in the last few years that are allowing patients to effectively treat, or at least manage, their CC.  My advice would be to try to stay positive and work with your doctors to consider best options for your particular presentation and  take each treatment as it comes knowing if it doesn’t work for you, there are second and third lines of treatment and new discoveries all the time.

    All the best to you and your wonderful family.

    debbie

    in reply to: Over 6.5 years – currently clear #97311
    debnorcal
    Moderator

    That’s wonderful news! It’s always inspiring to hear of the ongoing success of our members!

    in reply to: MRI Results #97290
    debnorcal
    Moderator

    Bridgette,

    I admire your positive attitude.  Sending positive thoughts for a clean scan.

    Debbie

    in reply to: the passing of Marion Schwartz #97289
    debnorcal
    Moderator

    To our Cholangiocarcinoma community,

    We were just heartbroken to hear of our dear Marion’s passing.  When Mike was first diagnosed in late 2014, Marion reached out to us with encouragement. She guided us to the Foundation’s “Newly Diagnosed” page and the list of top CC treatment centers.  When we waivered about leaving our local community doctors, Marion, in her characteristic diplomatic yet urgent manor, convinced us to get expert second opinions.   This action ultimately led to life saving, curative surgery for Mike.

    Over time, we got to know Marion better, and we were proud to call her our friend.  In the nearly ten years that she supported the Cholangiocarcinoma Foundation, the last seven as Chief Advocacy Officer, she has supported countless patients and caregivers on this discussion board with encouragement, spot-on advise, and ideas on where to get information outside her vast range of knowledge.  Marion knew everyone in our Stakeholders community – the doctors, nurses, researchers, and so many of the patients and caregivers.  She was a powerful force of nature, and thousands of us have benefitted from our connection to her.

    It is a sad irony that, after advocating for our foundation and helping so many of our patients, she should succumb to cancer herself. As we all know too well, though, cancer doesn’t discriminate.

    In the eleven years since Marion lost her husband, Bruce, to CC, our community’s knowledge and treatment tools have advanced considerably, with many more long term survivors now. Marion was an important contributor to this progress.  Our hope is that her memory and legacy inspires us all to keep raising awareness and raising funds for research so that soon this rare cancer becomes a highly curable cancer.

    Debbie and Mike Lax

    in reply to: Happy Mothers Day #96969
    debnorcal
    Moderator

    So very thoughtful of you, Gavin.  Thanks for your Mother’s Day wishes to all of us moms on this discussion board!

    Debbie

    in reply to: Mom of Adult CC Patient #96951
    debnorcal
    Moderator

    Mary,

    wonderful news!  I’m so glad your son is feeling so well.  In January, my husband (age 58) celebrated the third anniversary of his right hepatctomy and he remains NED.  There are survivors that beat this!!

    Debbie

    in reply to: Hi From Puerto Rico #96498
    debnorcal
    Moderator

    Javiony,

    i am so very sorry to hear that your wife has passed.  My thoughts and prayers are with you.

    debbie

    in reply to: Mom had clean quarterly scan 19 months post-Whipple! #96433
    debnorcal
    Moderator

    Taraph,

    That is wonderful news. Thanks for posting!

    debbie

Viewing 15 posts - 1 through 15 (of 324 total)