Discussion Board Forums Introductions! Hi new to site; caregiver

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  • #93048
    deadlift
    Participant
    Vallerina wrote:
    Hi Deadlift,
    I’m so sorry that you are going thru this. My dad was diagnosed in July after about 6 months of tests,etc. My dad has one large tumor and 5 small ones, all in the bile ducts. You mentioned your wife is in the AG-120 trial. Has she been diagnosed with IDH-1 mutation. My dad has that. He has done two chemo treatments of Gem/Cis, so far.

    Anyway, I will be thinking of you and your family. I’m glad that you found this forum. It’s been a huge help to me.

    Vallerina

    I believe the mutation is a prerequisite for the trial. I think she does yah

    #93047
    vallerina
    Member

    Hi Deadlift,
    I’m so sorry that you are going thru this. My dad was diagnosed in July after about 6 months of tests,etc. My dad has one large tumor and 5 small ones, all in the bile ducts. You mentioned your wife is in the AG-120 trial. Has she been diagnosed with IDH-1 mutation. My dad has that. He has done two chemo treatments of Gem/Cis, so far.

    Anyway, I will be thinking of you and your family. I’m glad that you found this forum. It’s been a huge help to me.

    Vallerina

    #93046
    deadlift
    Participant

    thanks jpmski ; tough spot for sure. Wait and see is not my best trait either.

    Thankfully the next two weeks while kiddo is out of school my mother is coming to visit to help with kid while I work. Kid is ASD so, we also get respite from the state to about 20 hours or so which helps a ton. Out of all of this seeing how he understands and sees what’s going on is the worst. I can deal with everything else in my own way but struggling on how to protect him is the worst.

    #93045
    jpmski
    Participant

    Deadlift (?, your parents must have hated you :-)

    First off, I’m sorry for your wife and you. That horrible. She’s too young for this cancer.

    You sound like you are at the mercy of the medical community, which for me was not a great feeling. You latch on to everything they say, good or bad, as fact. When actuality they speculating more than anything.

    Your wife is in a tough spot, so I don’t have a lot of practical advice for you. She needs a string of good news.

    Good luck,

    Joe

    #12698
    deadlift
    Participant

    My wife(45) was diagnosed in April. Basically the Thursday after Easter Sunday she was admitted to hospital due to jaundice. They told her Thursday that the biopsy they did Tuesday was malignant. Took more than a week for them to do a ton of imaging to finally decide to put a stent in.

    She had something like 10 tumors after that trip to the hospital. Finally managed to get her on chemo(oxyplat/gem) for 2 months(1 additional tumor after this), which had no affect. Then they decided to do a clinical trial with ag120. The pet scan to start the trial showed a couple tiny starts of tumors on her lungs.

    Waiting until sept to see how the ag120 reacts. This is her 3rd week on that I think. I see hopeful stories on here and not so hopeful stories. Before she started chemo she went to Disney World for her fathers 70th birthday party. While there the doctor couldn’t get a hold of her to discuss potential surgical options so she had me talk to him. That option didn’t pan out, but on the phone he told me she had 1 year. Not the kind of think i felt like I should be telling her while she’s at Disney. Not sure that’s the stuff to share unless you are doctor anyways. Unfortunately that was the only time they mentioned anything in the realm of outcomes and probabilities.

    I kinda feel like a single dad already; she is in pain that oxy helps manage, however she is also tired and weak since eating is tough.

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