Adenoid Cystic Carcinoma

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  • katenorwood
    katenorwood Member Posts: 1,912
    #22
    Pascale2014 said:

    Adenoid Cystic Carcinoma Organization International

    Hello there,

    My name is Pascale.  After my mother was diagnosed with ACC - sinus cavity/orbit and dura, I joined Adenoid Cystic Carcinoma Organization International.  They helped my family out tremendously and I cannot say enough about the group of survivors there.  I see some of you here too:)  If you need more information about ACC, please visit www.accoi.org and join the private yahoo group or you can see their public facebook page too - ACCOI The web site is full of incredible information, treatments/radiation types/side effects/ lung met treatments and so forth.  

    There is also a list of ACC knowledgeable doctors on the site listed by country/state/city. First and foremost...

     

    Pascale

     

     

     

    Please start a new post !

    Hello Pascale !

    You have so much insight to share please stay with us when you can !  Everyone this is a wonderful gal I met on the accoi site I've written about in the past !  Wonderful information to share about various tx's available.  So nice to read your post, thank you !  Hugs sent !  Katie

  • 322lowman
    322lowman Member Posts: 1
    #23
    Physician who specialize in ACC

    I too have Adenoid Cystic Carcinoma in my hard palate in 2013. I had reconstructive palate surgery followed by 6 weeks of radiation. The radiation was brutal with mouth sores could not eat for 4 months. I lost 70 lbs but once my mouth healed I was able to regain some weight back. I have lost my taste, smell and partial hearing due to radiation.  I also have a speech impediment from my surgery. I sound very nasal.  Two years ago they discovered some nodulus in my lungs where I was able to monitor them with CT Scans but now I just had a lung biopsy done and it is malignant consistent with ACC.  I am trying to find Physicians who specialize in ACC in the State of Ohio. I am going to OSU but they are referring me to a head and neck doctor.  Does anyone know of a Physician that targets ACC. I have heard there are no clinical trials for this disease and chemotherapy does not have any effect. Any information would be helpful. 

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited April 2018 #24
    WELCOME. Attention: New member needs information.

    Hello 322lowman and welcome to the H&N Forum where everyone starts at the beginning and becomes a seasoned expert in their year(s) of cancer.  I do not have a doctor or facility to help with your search, but I do have a suggestion.  You will normally have better results to your posted questions if you start a new thread.  These older threads sometimes (not always) are passed over by the masses.  H&N patients and their caregivers and friends are busy and focused group, if they knew of your sincerity and what a nice informational thread you wrote, I am sure they would be happy to help.  Members are often stating that they would like to try and get more involved and pay back, pay forward, acknowledge through answering questions that they applicate the information they received.

    Now I must go, I dug up a corner of a path and a flower & shrub bed yesterday to remove some unwanted (non-attractive) plants and with no rain in sight today there is nothing holding me back from landscape completion.

    Bye and good luck.

    Matt

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