Discussion Board Forums Introductions! My sister recently diagnosed

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  • #101171
    bglass
    Moderator

    Hi Dolan11661,

    There are a lot of great resources on the Cholangiocarcinoma Foundation website for patients and caregivers.  Here is their link to information about genomic profiling.  Please note there is information both for patients/caregivers and for medical providers.  You may with to share the provider fact sheet with your sister’s doctor.

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    Regards, Mary

    #101170
    Dolan11661
    Participant

    Thank you very much for you response, insight, prayers and support.  I have it hard because my sister is very private.  I unfortunately cannot really have these conversations with her because she keeps everything in.   I have only gotten to be a little more in control now because she is feeling so bad.  She was and hasn’t been in pain with the exception of the day she got admitted to the hospital.  Oddly enough, the week before,  I was with her and everything was normal, with the exception that she thought her problem was gallstones so she was in a little discomfort.  Other than that, we went to the store, got caught in the rain and laughed like we always do.  A week later she was diagnosed with cancer and within a couple weeks after her first chemo she was like a ghost.  It’s been downhill ever since.   I certainly hope her doctor has some other options.  If he has nothing to offer, I would like to be fully armed with different ideas.  As long as there is breath in her body there is hope.  I won’t take “no” for an answer.  There appear to be other options to try, and certainly it is his job to find one that she may qualify for.  Thank you again.  Will update after the appointment.  I believe the genomic profiling is what Foundation One does and since I mentioned it to him a month ago, hopefully he has  done something about that.   In my conversation with him a few weeks ago, he actually said to me:  “You know, you brought up a good point about Foundation One.”  I thought that was very odd for him to say.  I only knew about it because I spoke to a husband who lost his wife to this.  I have noted genomic profiling to mention in our meeting nonetheless.  Many thanks again, Donna

    #101168
    bglass
    Moderator

    Hi Dolan11661,

    Thank you for posting — but I am very sorry to hear about your sister’s diagnosis which brought you to us.

    Generally the initial treatment for advanced cholangiocarcinoma is chemotherapy (typically gemcitabine and cisplatin).  If a second-line treatment becomes necessary, it may involve a different chemotherapy or a targeted treatment if an appropriate one is available.  So it would be worthwhile to ask about genomic profiling with your sister’s doctor.

    In terms of medical approaches to ask about, you may wish to see if the cancer center where she is being treated has palliative care resources to offer.  Palliative care is directed toward relieving pain and any side effects from treatment.

    Be sure and ask your sister what she wants to do, how she views different care options available.  Encourage her to speak up about any pain or discomfort she is feeling.  Your sister must feel much comfort in knowing you are looking out for her.

    I hope the appointment on Thursday goes well and brings some answers.  Please send any questions you or your sister have our way.  Our community’s wishes and prayers are with you and your family.

    Regards, Mary

     

    #101167
    Dolan11661
    Participant

    With stage IV intrahepatic cancer.  I think that is what it is because I have had some issues with the whole health care world.  My sister diagnosed in April 2021.  She is very private.  We live three hours apart.  Im trying to be her advocate.  She has had three cycles of chemo and I am not sure which. Since chemo she has drastically declined.  She has had blood clot in lung, pneumonia and the list goes on.  Im trying to get her to a doctor at Moffitt Center but she is in rehab now to get stronger.  We have an appointment with her doctor Thursday and I assume it’s to try other options.  Any information anyone can give me if things to ask would be great.  I don’t think she has had a Pet Scan yet and I think she should have.  I suggested to the doctor about sending blood or cells or whatever to foundation one for possible targeted therapy.  He had not done this prior.   I am really struggling to feel like I am doing everything I can for her.  I know there are other options abs clinical trials.   She won’t do the chemo anymore.   Thanks to all in advance and prayers for all who are battling this horrible disease.   Donna

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