anyone with a reoccurence after resection PLEASE SHARE YOUR EXPERIENCE

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  • March 24, 2015 at 2:19 am #87391
    mbachini
    Moderator

    Daisy,

    I had a recurrence 3 months post resection with metastasis to my lungs. I did Gem/Cis chemo for 6 months, Gemcitabine alone for about 3, and then Taxotere for another 6 months before finding the immunotherapy trial at NIH.

    Seek a second opinion if need be and continue to ask questions. You are a great advocate for your mother. Sending hugs and prayers your way!

    Melinda

    March 24, 2015 at 2:04 am #87390
    mattreidy
    Spectator

    See my journey here: http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=18

    I had a clean resection in Jan 2014 and recurrence in Jan 2015. Doing chemo now in hopes of having another resection if it doesn’t continue to spread. If it does, I’m going for an immunotherapy clinical trial at NIH/NCI.

    March 23, 2015 at 5:58 pm #87389
    marions
    Moderator

    Daisy….try this link:
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=84582#p84582

    In order to follow Percy’s postings take the following steps:
    click on his signature: PCL1029
    window opens:
    http://www.cholangiocarcinoma.org/punbb/profile.php?id=5579
    click on below:
    View all PCL1029’s posts
    View all PCL1029’s topics

    Hope this helps.
    Hugs,
    Marion

    March 23, 2015 at 4:48 pm #87388
    daisy
    Spectator

    I went under users….looked up Percy did not come up??

    March 23, 2015 at 11:10 am #87387
    genevieve
    Spectator

    Hi Daisy,

    My husband has had two recurrences after resection, and had surgery and then adjuvant chemo both times. His was a single lesion each time in the liver only, so that is different to your Mom.

    I think Percy had ablation (microwave?) after recurrence with a lymph node involved, but you have probably found that post if you have been searching.

    Best of luck with the treatment for your Mom,

    Genevieve

    March 23, 2015 at 1:55 am #11077
    daisy
    Spectator

    my mom has had a reoccurence after being clean for over a year. she has a 1/2 cm lesion on her liver and 3 nodes involved.

    If your case is similar should you share what worked vs. not?? i will be conferenced in tomorrow on the meeting with the onc and would love to know what i should ask and be looking for. Lisa Crane as always was extremely helpful looking to see others experiences. as of not no mets anywhere else. I have been wanting radiation along with chemo but so far no one has agreed to radiation?????

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