Viewing 6 posts - 1 through 6 (of 6 total)
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  • #93009
    deadlift
    Participant

    Thanks for all the kindness here.

    I didn’t know about all the risks from the stents however it was either stent or jaundice so nothing much to do with that. I think her’s is titanium not plastic, or titanium and plastic coated? either way it’s non-ferrous as she’s had plenty of MRis in the meantime.

    She was getting Chemo fairly local, but we’ve since given up on that and are doing the ag120 trial. This is through MSKCC . She had seen the head of oncology i think, and also the chief of surgery but at the time they said start chemo as any surgical option would take too long to set up given how fast the tumors were growing. The head of oncology left for another office so she’s seeing someone else at MSKCC; all that really means to me though is she’s at the clinical trial. wait and see. Near as I can tell if the ag120 isn’t effective they would go folfuri(spelling) chemo next?

    I used to bike, i don’t like leaving the house much, cause i can’t leave wife in charge of kid as she is tired and weak, and I only want to leave him with baby sitters so much. We have someone for him from 230-7 or later on mtw, but I need to have time with him specifically to keep his love meter high so to speak.

    #93008
    lainy
    Participant

    Dear Julie, great post and powerful words from a patient’s point of view of the Caregiver. Almost every time Teddy asked for something he would apologize for putting ME through so much, even if it was just a scrambled egg! Sometimes I thought that was worse to hear than nothing. I would do it all again without his apologies if it would bring him back. Being a Caregiver is not easy, I think, mentally. And that is why we handled it with humor. Honestly, the humor really helped us both. Probably could have written a TV Sit Com from things we said and did.
    You know, Sister Julie, I will be cheering for your Ablation like never before. I know you wanted this and girl, you fought like crazy and got it! Best of luck and I will be thinking of you!

    #93007
    iowagirl
    Member

    Dear deadlift,

    From a patient’s perspective, I would like you to know that we appreciate everything that our caregivers do for us and for our family. We may not always express that, because mainly it’s very difficult to pull outselves out of the fog of treatment and fear to let our loved ones know how much they are appreciated. For some of us, who were always “powerhouses” of the family….doing everything and anything for the family on a daily basis, it becomes very frustrating to suddenly have to be waited on. Everyone’s life becomes turned upside down, backwards and inside out. All I can tell you is, try to find a few moments for yourself. For my husband, it was going out biking on the trail for an hour. Don’t be afraid to ask for help. Where housework is concerned, if you live in a large enough area that has various housekeeping services, there may be one that offers free housecleaning while your wife is in active treatment for cancer. I did not take advantage of that and wish I had. I am currently having a recurrence after two surgeries and will be having an ablation in another week, so I hope that will be good enough for the service to include me. It’s one thing taken off of the caregiver’s shoulders.

    Hang in there……you are doing a fine job. I hear the saddness in your words……the loss of “how things have aways been”, but please try to find time to enjoy some time together…even if only sitting outside at night, watching the stars for a while. My husband and I go for car rides around the perimeter of the city toward dusk. The night coming on, seems to be a calming time and we relax a little during those rides.

    Hugs, Julie T.
    ICC diagnosed Feb 2014, 2 liver resections , gem /cis and upcoming ablation

    #93006
    marions
    Moderator

    deadlift…..As mentioned by Debbie, welcome to our special group of people touched by this cancer. Sorry for the information overload, but the nuances of this disease as well as the various treatment options can be complexing and difficult to understand.
    Most likely you already know that biliary stents can clog and must be replaced frequently. (I assume your wife has a plastic stent.) Try to take her temperature (daily ) and call the physician with the first sign of a fever. If physician is not able to get back to you then you should not delay a trip to the hospital, as an infection can be serious and must be avoided.
    Our lives take on a different meaning with the diagnosis of this cancer. I understand why you feel like a single Dad, as everything has changed. I am crossing my fingers for a great September report.
    Please stay with us, dear deadlift. We care and we are in this together.

    Hugs,
    Marion

    #93005
    debnorcal
    Moderator

    Welcome to our group, although I am so sorry that your wife is ill and you had reason to find us. I think you will find that we are a very caring, supportive group of people affected by CC, and that we have a great deal of knowledge and compassion among us.

    It sounds as if your wife has been pretty sick since April. I’m sure that’s been hard on you and your family. Can I ask where your wife is being treated? One of the first things we encourage newly diagnosed patients to do is to seek out a specialist that has a great deal of experience treating CC. Such doctors typically work with a multidisciplinary team, including surgeons, oncologists, interventional radiologists and more, to provide the patient with the best treatment available. This is in contrast to general medical facilities that have limited to no experience treating CC and usually offer little other than chemo.

    If you search around our website, you will find that many of our patients are successfully managing their disease. Improved treatments and promising clinical trials are becoming more and more available. I hope you will find our site helpful.

    Debbie

    #12690
    deadlift
    Participant

    Been digging around the forums and I’m
    On information overload.

    My wife (45) was hospitalized in April for jaundice and at the same time her biopsy results came
    In as cholangial carcinoma , bike such primary with multiple tumors on her liver. She had a stent put in and was sent home. 2 months of gem/oxy had no effect. I think she was at 11 tumors after chemo. Now she has been two weeks on ag120. Though the pet scan prior to starting ag120 showed two tiny tumors on her lungs.

    Waiting to see about next pet scan in sept. Already feel like a single dad since she is so tired all the time and sleeping all the time. Wait and see I guess.

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