60 y/o Mom with Cholangiocarcinoma (Chicago) + omentum/gastrohepatic ligament

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  • March 4, 2020 at 5:42 am #99868
    bglass
    Moderator

    Hi Brian,

    Welcome to our community.  I am sorry to hear that your mom got this difficult news.  Because cholangiocarcinoma can be symptomless until it is quite far along, the diagnosis can be unexpected and blindsiding.  It sounds from what you describe that your mom has found good doctors to guide her care, and a treatment plan is being worked out.

    I hope you have found the provider map tool on the Cholangiocarcinoma Foundation website, which can help identify medical providers with cholangiocarcinoma experience, who then can be checked to see if they are covered by her insurance.  I will add the link at the bottom of this message in case anyone is interested.

    In terms of advice, I believe an important concern with this cancer is to have a treatment plan that anticipates what the next treatment might be if the day comes when the current treatment loses effectiveness.  Her genomic testing is important in this regard because there are targeted treatments available or in testing for some of the mutations that can be factors with this cancer.

    A second suggestion is to stay on top of pain management.  Patients sometimes feel like they want to tough things out, but the longer pain is left uncontrolled, the harder it might be to bring under control later on.  You can see if your medical provider offers palliative care resources to help address pain, and if pain continues to be a problem, push her doctors to try something different or additional.  Hopefully the chemotherapy can also produce results that help ease pain.

    Regarding supplements, if your mom considers taking any, they should be discussed with her doctors in advance to be sure they will not interfere with the effectiveness of treatment or with the tests doctors will ask for.  (For example, biotin at higher doses can mess with some tumor marker results, including CA 19-9.)  My own personal preference was not to take any supplements other than a multivitamin, and none were ever recommended by my doctors so my impression is this is a matter of personal choice.

    Fingers crossed that the chemo will do its job for your mom.  Please send any questions our way.

    Regards, Mary

     

    Link to provider map: https://cholangiocarcinoma.org/specialist-map/

     

     

    March 3, 2020 at 2:15 pm #99867
    Marshbri
    Spectator

    Thank you so much for the quick reply! My wife’s family is from Lithuania (her mother was born there), so your menu sounded very familiar!

    First and foremost, I am sorry for the loss of your mother. It sounds like you were a great support for her and I am sure she appreciated you throughout – it says a lot about who you are without knowing anything about you.

    We’ve had some challenges with the health insurance system here and that’s massively frustrating and limits us. BUT, we were able to get the covered hospital to do Tempus testing (similar to FOUNDATION ONE I’m told) and will have the results within a week or two. Those will go to both her current hospital and the one we hope to transfer to to analyze.

    The eating has already been quite an issue – she’s barely able to eat anything except yogurt, fruit and oatmeal.

    Thanks again for your note back – it means a lot.

     

    March 3, 2020 at 1:52 pm #99862
    Litvak
    Spectator

    Hi Marshbri,

    I’m glad you found this community (even though I wish you wouldn’t need it).

    I was in a very similar situation: my 63 year old mother was diagnosed with Stage 4 Cholangiocarcinoma last year. Sadly, she passed this week (I always hated seeing posts that start with death, sorry), but I want to give you some hope and a little bit of know how I accumulated:

    1. Get genomic testing ASAP. Like arrange it by the end of this week. There are incredible advances in targeted therapies and immunotherapies. And they’re are your best hope. I don’t know what are the best options in USA, but here in Lithuania, Foudnation One is probably the fastest, easiest and accepted everywhere. I needed to pay for the test out of pocket, but maybe your insurer will cover it.

    2. When you get your genomic test results. go look for clinical trials for targeted therapies and immunotherapies. There is a bunch of information on this website.

    3. When your mom will start treatment, the things she will be able to eat will be very limited. After trial and error, I found out that my mom could eat the following: turkey meat, beetroot soup,  yogurts, soured milk (don’t know if you have this in the USA). berries, bananas, bread, buckwheat, and non-alcoholic beer and vine.

    4. There are a bunch of supplements everyone is taking: Vitamin D, turkey tail mushrooms, CBD, and at least one supplement that is good for your cardiovascular system. I don’ know if they actually help, but I felt bad when I found out everyone is using them and I haven’t already bought them for my mum.

    5. Be there for your mom. This will be very new for her and very hard. She will need support.

     

    • This reply was modified 4 years, 8 months ago by Litvak.
    • This reply was modified 4 years, 8 months ago by Litvak.
    • This reply was modified 4 years, 8 months ago by Litvak.
    • This reply was modified 4 years, 8 months ago by Litvak.
    March 3, 2020 at 11:19 am #99860
    Marshbri
    Spectator

    Hello all,

    It’s nice to meet you and it’s nice to find a community of people dealing with this cancer at a time when I am rapidly trying to find answers.

    In short, to start 2020 my mom had jaundice and other symptoms while celebrating her 60th birthday with the family on a trip to Florida. Immediately upon her return to Chicago (where we both live), she went to the ER to get a stent put in and found out she has Stage 4 Cholangiocarcinoma. It was a shock to say the least – my mom is otherwise very healthy and it happened very suddenly. There are quite a few hurdles we’ve been dealing with so far:

    • My mom has a HMO insurance policy with Blue Cross / Blue Shield, which has limited where she can go for treatment. The hospital that she has been treated at thus far in Chicago hasn’t been very compassionate and has given a pretty dire outlook – 12 months max with chemo to only manage the cancer.
    • After a few days of research following the diagnosis, we found a survivor who currently runs a Cholangiocarcinoma foundation. She was wonderful and after finding out we live in Chicago, introduced us to the team that saved her life who coincidentally had transferred to University of Chicago.
    • They gave us a second opinion, no questions asked. While it’s not much different than the first, they were much more compassionate and have given us a glimmer of hope that they’d assess how chemo is working and determine IF she will be eligible for surgery at a later date.
    • The diagnosis is that she has multiple hepatic lesions in addition to metastatic nodules in the omentum and gastrohepatic ligament. There is also a soft tissue nodule in the right lower dorsal chest wall that is concerning for metastatic disease.
    • My mom will start chemo next week while we try to navigate through the financial/insurance/transfer side of things. She’s in a lot of pain that’s getting worse by the day.

    I am wondering if anyone with a similar diagnosis has treatment advice or has survived given such a complex outlook.

    Thanks in advance.

    Brian

    • This topic was modified 4 years, 8 months ago by Marshbri.
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