Discussion Board Forums Introductions! new to this site, need some advise

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  • #99597
    debnorcal
    Moderator

    Hi McFmags,

    I’m sorry your husband is dealing with cholangio, but glad you found this site. We are a community of caring, supportive patients and caregivers with a wide range of experiences with this disease.  So much has been learned about CC in the six years since my husband was diagnosed.

    I’m not familiar with mistletoe therapy, so I can’t offer any suggestions about it.  I did want to ask if your husband has had a biopsy and genetic profiling done.  There are some effective treatments for certain genetic mutations.

    welcome to our group.

    Debbie

    #99588
    bglass
    Moderator

    Hi McFmags,

    Welcome to our community.  I am sorry to hear about your husband’s diagnosis and hope he receives good news from the next set of scans.

    There have been a few board postings about mistletoe.  If you use the site search engine you can find them.  As with any treatment, it is important to be sure you are receiving qualified medical advice, and if you are having other treatments such as chemo at the same time, be sure your doctors know about any complementary treatments you are trying.

    Please keep us posted.  Take care, regards, Mary

     

    #99587
    Eds
    Participant

    Hi McFmags, I’m sorry you got into these problems. My mother lived almost 2 years after the diagnosis, she left us in May of last year. I have tried many complementary substances, some have not been able to get them prescribed by doctors (NED-170). It is possible that they have helped above all to calm the side effects, in fact you have never had problems during the adjuvant gemcitabine after the operation, nor during cis + gem. I believe his death was hastened by the wrong use of pain therapy. We also tried mistletoe (we live in Italy and it’s not sold here, I had to buy it in Switzerland). Unfortunately we used it for a short time before the end, I suggest you try it as soon as possible because effects, if any, are not immediate. Your specialist will be able to indicate the dosage and type, they are thin needle bites (my mom did them alone) near the sick area, to stimulate an immune response. I wish you the best, if I can be of more use to you than I have been for my mother, ask me.

    #99586
    McFmags
    Participant

    Hello, my husband was recently diagnosed with advanced cholangiocarcinoma, after 6 series of chemo we are now waiting to see if there has been any response to the chemo, we are concerned that the chemo has not been effective. this week will find out. In the meantime we have been exploring adjunct treatments and have consulted with an MD who works with mistletoe therapy.  we were wondering if anyone has had any experience with this treatment.

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