Newly Diagnosed – either Cholangiocarcinoma or Pancreatic Ca

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Viewing 9 posts - 1 through 9 (of 9 total)
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  • April 2, 2015 at 2:09 am #87337
    dukenukem
    Member

    You might want to check on this one too which is also in Seattle:

    Virginia Mason

    Duke

    April 2, 2015 at 1:49 am #87336
    lainy
    Spectator

    Dear Bob, perfecto! You are on the right path. Gem/Cis is usually the first line of chemo cocktail and SK and Dana Farber are both very familiar with CC. Good work. You need to be where there is plenty of CC experience and that is just where you are headed. Looking forward to what SK says. Once a specific DX is made and the treatment plan is in place and working the fright turns to fight and you are one heck of an advocate and a wonderful son-in-law. Looking forward to the next report.

    April 2, 2015 at 12:50 am #87335
    jrbobdobbs
    Member

    Update – my dear MIL was able to do a couple of rounds on Gem/Abraxane but had to discontinue because of neutropenia and thrombocytopenia. Fever of unknown origin put her in the local hospital for a few days. Neupogen pushed the WBCs back up nice and strong, she’s feeling much better, back home.

    Second opinion already received at Dana Farber in Boston – rec. going to Gem/Cis. Next visit for a third opinion already scheduled for Sloan Kettering this week.

    Previously, our local oncologist was thinking it was a tossup between pancreatic and CC while still unknown origin, but now Dana Farber and our onc agree its most probably CC originally, and Gem/Cis will be the better protocol.

    Any thoughts appreciated.

    Thanks,
    Bob

    March 21, 2015 at 1:13 am #87334
    middlesister1
    Moderator

    Bob,

    In case you missed it, Gavin just postedtoday under the clinical trial heading about a clinical trial coming up using Abraxane. Hopefully this means that you MIL is getting a new and promising treatment. Since we probably won’t see the clinical results for a long time, it would be much appreciated if you can keep us informed on how she does with the treatment.

    Fingers are crossed that she will have a wonderful response.

    Take care,
    Catherine

    March 19, 2015 at 4:46 am #87333
    lainy
    Spectator

    Bob, good to hear you are pursuing other opinions that way you will never look back and wonder. This is such a crazy rare, Cancer and you will want a place that is well established with CC. Dana Farber and SK are both well versed in CC. It really upsets me when someone lives to the glorious age your MIL is then gets something like this! You just really wonder why! You are a good advocate and read up as much as you can, knowledge is our best tool for fighting CC. Let us know how MIL is progressing.

    March 19, 2015 at 4:01 am #87332
    jrbobdobbs
    Member

    IowaGirl and Lainy –

    Thank you so much for your generous welcome posts. I am trying hard to catch up and understand more about this illness, as ill-defined as it is in my Mother-in-Law’s case, and I appreciate your willingness to help.
    Julie – MIL is being treated at a local hospital in her town. We are pursuing second opinions at Dana Farber, Sloan-Kettering and Seattle Cancer Care Alliance.
    I realize Gem/Cis is the usual first-line treatment. Not sure why our oncologist is choosing to go with Gem/Abraxane.

    Yours,
    Bob

    March 18, 2015 at 6:02 pm #87331
    lainy
    Spectator

    Dear Bob, welcome to our elite family and the best place to be for CC support. You are doing and asking all the right things but want you to know that we are big believers in 2nd and 3rd opinions. Different eyes and minds see different things. Like Julie said the most common first course is GEM/CIS. We have a search button at the top of the page and you can type in any word and usually get a vast array of previous posts on that subject. I am also giving you some great sites for our new family. Please keep us posted as we truly care.

    Newly diagnosed:
    http://cholangiocarcinoma.org/the-disease/newly-diagnosed/
    Free complimentary Book or e-mail download:
    http://cholangiocarcinoma.org/news/foundation-resources/
    Biliary drainage – stent information card
    http://cholangiocarcinoma.org/biliary-emergency-information-card/
    Register for a CURE
    The International Cholangiocarcinoma Registry
    http://cholangiocarcinoma.org/professionals/research/patient-registry/

    March 18, 2015 at 5:54 pm #87330
    iowagirl
    Member

    Bob,

    IMO, this is certainly an appropriate forum for this case. Often, it is difficult or impossible to definitively diagnose CC (cholangiocarcinoma) even from a biopsy and blood tests. All my blood tests were totally normal, even though the CT showed a 5 cm tumor inside my left liver lobe (intrahepatic). Since liver cancer, itself, or mets from elsewhere are far more common than CC, they went looking for some other primary cancer site, but nothing showed up. The biopsy only showed that it was an adenocarcinoma, but no cells gathered indicated origin. The Pet scan was totally clear except for the tumor in the liver. It was not declared to absolutely be CC until the pathology came back after surgery (left lobe was removed as it was in an operable position).

    I’m not familiar with Abraxane, though others here probably will be. Typically, CC patients will get Gemcitabine and Cisplatin as chemo to try to beat back the tumors.

    Where is your mom being treated? Have you considered getting a second opinion elsewhere?

    Just going through all the testing is enough to fatigue a person. I remember that part well. Please give your mom hugs from me. You are doing all the right things….asking the questions and seeking more information.

    I’m sure others will be along soon to greet you also and probably have more thoughts on your mom’s presentation.

    Julie t.

    March 18, 2015 at 5:23 am #11061
    jrbobdobbs
    Member

    Hi, my name is Bob, and I’m wondering if there is a spot here for me to get more information for my extended family.
    My 79 year old Mother-in Law was recently found to have 2 large tumors on her liver, definitive source unknown. Her oncologist is currently operating with the working diagnosis of Cholangiocarcinoma, but thinks that that this is most likely either Intrahepatic Bile Duct Carcinoma or Pancreatic Cancer with metastases to the Liver. This cancer is by definition stage 4 at this point, and the biopsy shows high grade, poorly differentiated cells.
    My mother in law is in great spirits, although fatigued. CT shows a 3 cm and a 5 cm tumor in her liver. The PET scan unfortunately didn’t reveal a clear origin for this cancer. The neoplastic cells are positive for CK7, CA 19-9 and CA 125. Elevated Alk phos, normal AST and ALT. Tissue of Origin tests came back with no additional information to help us with diagnosis or help target therapy.

    At present she is receiving Gemcitabine and Abraxane combo therapy for a total of 3 months, March until June The plan is to see if this protocol will shrink the tumors and go from there.

    Any help appreciated, if this is indeed an appropriate forum for this case, which isn’t necessarily Cholangiocarcinoma, but looks like it might be.

    Yours,
    Bob

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