Newly Diagnosed

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  • #98899
    bglass
    Moderator

    Hi Shshaw,

    Thank you for your note.  Radiation is used in some cases with our cancer, so no one should be generically negative about it.  It would take an opinion from a radiologist experienced with cholangiocarcinoma, however, to determine if it is an appropriate treatment for your case, either now or in the future.  Whether or not it can be used depends on factors such as the location and size of tumors.

    Regards, Mary

    #98896
    Shshaw
    Participant

    Hi Mary

    Thanks for your response about HAI. You have been so helpful with all of your info. I am a bit skeptical about it since my 2nd opinion Dr said it is not any good to much toxicity. Do you know if there is any of the many radiation treatments that are effective in treatment of ICC? Everyone I have spoken with has been negative about this.

    #98891
    bglass
    Moderator

    Hi Shshaw,

    It is good to hear from you and that your doctors have treatment plans in mind.

    My understanding is that the patient outcomes from chemotherapy delivered via a hepatic arterial infusion (HAI) pump generally have been positive when compared to other chemo options.  As you mention, one benefit is lighter side effects given that the chemo goes straight to the liver.  There are two cholangiocarcinoma patient blogs I am aware of by patients who were treated using the pump.  Both patients reported a positive experience having chemo delivered via HAI.  Here are the links:

    https://becauseicansir.com/  (Look at the posting for April 7, 2018).

    http://nowwithouthesitation.blogspot.com/2016/09/me-and-my-pump.html (Look at postings around September 2016)  Sadly, the author of this blog passed away earlier this year.

    I hope this is helpful.  If you have any additional questions or concerns, please send them our way.

    Regards, Mary

     

     

    #98886
    Shshaw
    Participant

    I got a 2nd opinion at Sloan Kettering (MSK) for treatment of my IHCC. They did CT scan and said surgery is not an option. I have started standard Chemo and they want me to start Hepatic Arterial Infusion (HAI) in October. Has anyone heard of this and how effective is it? It involves installing a pump in abdomen (size of hockey puck) which delivers higher doses of Chemo directly to liver to attack tumor only. They say side effects are much less. Does anyone have any info about this treatment?

    #98878
    bglass
    Moderator

    Hi Shshaw,

    Welcome to our community, but I am sorry that your diagnosis brought you here.

    I am a patient myself, not a medical person, but can provide some general information in response to your questions.  The gem-cis chemo treatment you are receiving is standard of care for our cancer when surgery is not possible.  You raise a good question about radiation.  Radiation is used with our cancer, but it is used with care to avoid harming the liver.  A principal goal of treatment is to preserve good liver function.  The geography of a patient’s tumors is an important consideration for treatment recommendations.  If tumors are too large, too numerous, or near major veins, or if the radiation would have to also affect nearby organs in a risky way to get at your tumor, then it would not be recommended.  Sometimes doctors try chemo first because in many patients it will shrink the tumors or eliminate small ones, and this can open the door to surgery or ablation or radiation.

    Also, the liver-directed therapies tend to be used in patients whose cancer is confined to the liver.  If there is suspicion cancer is moving beyond the liver, systemic therapies are more commonly used.  This is not always the case, so again, good medical advice should be sought to identify the best possible treatment approach.

    It is imperative with cholangiocarcinoma to be seen by experienced doctors, which generally means in major cancer centers.  The Cholangiocarcinoma Foundation website has a tool – a specialist map – posted on its website for finding doctors, which is based on insurance data showing which doctors are treating a lot of our patients.  This tool (link provided below) can help you locate doctors who are specialized in cholangiocarcinoma.

    Generally the major cancer centers will have a team of doctors of the different relevant specialties (“tumor board”) review cholangiocarcinoma cases, to determine which treatments (you listed several of them) are the best options.  You may wish to consider seeking an opinion from an experienced radiologist about whether you are a candidate for some of the treatments you are interested in.

    Please take a look at the many resources for newly diagnosed patients on the Cholangiocarcinoma Foundation website.  I hope you will stay in touch, and send any questions our way.  Patient stories posted on the discussion board are a valuable source of information to others who will walk our path in the future.

    Take care, regards, Mary

    Specialist Map

     

    #98877
    Shshaw
    Participant

    I am 74 year old male diagnosed with Intrahepatic Cholangiocarcinoma 7 weeks ago. I have started Chemo with standard Gen/Cis regimen. One tumor 7 cm x 5cm with smaller spots in right lobe. Regional lymph node involvement. I have seen 3 oncologists and all have not been receptive to any any form of radition/ablation/SIRT/TACE type of treatment. Resection has been pretty much ruled out. I am in pretty good shape, jogging and blood tests have been good. I have no symptoms except weight loss. Can anyone give me any any suggestions/advice. Why are they negative towards radiation? Any suggestions on where I might find a clinic/doctor who specifically specializes in this disease.

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